PERCEIVED STRESS AMONG ALZHEIMER SUPPORT GROUP 
MEMBERS: A BROADER PERSPECTIVE
Kerry Kuluski 
School of Social Work 
Lakehead University
A thesis submitted in partial fulfillment 
of the requirements for the degree of 
Master of Social Work 
Specialization in Gerontology 
September 2004
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
1^1 Library and Bibliothèque et Archives Canada Archives Canada
Published Heritage Direction du 
Branch Patrimoine de l'édition
395 Wellington Street 395, rue Wellington 
Ottawa ON K1A0N4 Ottawa ON K1A0N4 
Canada Canada
Your file Votre référence 
ISBN: 0-494-00482-7 
Our file Notre référence 
ISBN: 0-494-00482-7
NOTICE: AVIS:
The author has granted a non­ L'auteur a accordé une licence non exclusive 
exclusive license allowing Library permettant à la Bibliothèque et Archives 
and Archives Canada to reproduce, Canada de reproduire, publier, archiver, 
publish, archive, preserve, conserve, sauvegarder, conserver, transmettre au public 
communicate to the public by par télécommunication ou par l'Internet, prêter, 
telecommunication or on the Internet, distribuer et vendre des thèses partout dans 
loan, distribute and sell theses le monde, à des fins commerciales ou autres, 
worldwide, for commercial or non­ sur support microforme, papier, électronique 
commercial purposes, in microform, et/ou autres formats.
paper, electronic and/or any other 
formats.
The author retains copyright L'auteur conserve la propriété du droit d'auteur 
ownership and moral rights in et des droits moraux qui protège cette thèse.
this thesis. Neither the thesis Ni la thèse ni des extraits substantiels de 
nor substantial extracts from it celle-ci ne doivent être imprimés ou autrement 
may be printed or otherwise reproduits sans son autorisation.
reproduced without the author's 
permission.
In compliance with the Canadian Conformément à la loi canadienne 
Privacy Act some supporting sur la protection de la vie privée, 
forms may have been removed quelques formulaires secondaires 
from this thesis. ont été enlevés de cette thèse.
While these forms may be included Bien que ces formulaires 
in the document page count, aient inclus dans la pagination, 
their removal does not represent il n'y aura aucun contenu manquant.
any loss of content from the 
thesis.
Canada
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
ABSTRACT
This study examines the experience o f Alzheimer caregiver support group members in relation to 
their perceived levels o f stress. Thirty-three participants from the six Alzheimer Society sites in 
the jurisdiction o f Northern Ontario participate in the study. The research tool consists o f a 26- 
item self designed survey assessing characteristics of the support group, the caregiver, the care 
receiver, and outside assistance. These independent variables are examined to outline their 
probable influence on a caregiver’s perceived stress. The survey incorporates Cohen’s 4-item 
Perceived Stress Scale along with a question measuring self-identified caregiver stress which 
collectively created the dependent variable perceived stress. Additionally, these caregivers are 
given the opportunity to express through open-ended survey questions how they view their role 
as a caregiver, what contributes to their stress and service ideas that they have for the future. 
Significant relationships are found between the independent variables o f self-care, gender, 
marital status, and difficulty asking for help with the dependent variable perceived stress. No 
significant relationships are found between perceived stress and the independent variables, length 
o f support group attendance, employment status, living arrangements, stage of disease, use o f 
respite, barriers to respite, and regular help from family and friends. This may be a result o f the 
sample size of this study. Through a Structural Functional, Feminist, and Contextual Fluidity 
framework, caregiving is discussed in relation to the influence o f political and sociological 
forces.
11
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
ACKNOWLEDGEMENTS
I would like to extend my sincere gratitude for the support and encouragement from my thesis 
supervisor Dr. Connie Nelson who has become an inspiration to me throughout this educational 
experience. Furthermore, I would like to thank the members of my thesis committee, Dr. 
Michael Stones, Professor Mary Lou Kelley, and Heather Neilson-Clayton for taking time out of 
their busy schedules to provide guidance through their ideas and recommendations. I would like 
to express my gratitude to my parents Rick and Dyan Kuluski whose unwavering support and 
encouragement made it possible to complete this extensive piece o f research. Finally, I would 
like to thank the staff o f the Alzheimer Society o f Thunder Bay, Sudbury, Kenora, Timmins, 
Sault Ste. Marie and North Bay who helped to make this research possible along with the 
caregivers who took the time to help me learn about their experience.
Ill
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
TABLE OF CONTENTS
A bstract............................................................................................................................................ ii
Acknowledgements.........................................................................................................................ill
Table o f Contents............................................................................................................................iv
Tables and F igures..........................................................................................................................vi
CH APTER 1
Introduction
O verview ..........................................................................................................................................1
Importance of the S tudy .................................................................................................................9
The Purpose Statement................................................................................................................... 9
Theoretical Perspectives
Structural Functional Theory......................................................................................................... 10
Feminist T heory ..............................................................................................................................11
Contextual Fluidity T heory ........................................................................................................... 13
CH APTER 2
Literature Review
Introduction..................................................................................................................................... 15
Independent Variables
Support Group Background Inform ation.................................................................................... 16
Support Group Characteristics......................................................................................................19
Caregiver Characteristics.............................................................................................................. 20
Care Receiver Characteristics.......................................................................................................25
The Use o f Outside Interventions ..................................................................................................28
Dependent Variable
Perceived Stress ............................................................................................................ ................. 41
C H A PTERS
Methodology
Introduction..................................................................................................................................... 45
Sam ple..............................................................................................................................................45
Procedure ..........................................................................................................................................46
Research D esign..............................................................................................................................49
Variables ..........................................................................................................................................56
H ypotheses...................................................................................................................................... 57
Definitions....................................................................................................................................... 59
Delim itations...................................................................................................................................65
L im itations...................................................................................................................................... 65
IV
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
CHAPTER 4
Results
O verview ......................................................................................................................................... 67
Number of Years o f Support Group Attendance ....................................................................... 72
Gender of the Caregivers ...............................................................................................................74
Age Category o f the Caregivers................................................................................................... 76
Type o f C aregiver.......................................................................................................................... 79
Marital Status o f Caregivers ............................................. ............................................................80
Employment Status o f Caregivers ...............................................................................................83
Living Arrangements between Caregiver and Care Receiver.................................................. 87
Stage of Alzheimer Disease o f Care R eceiver........................................................................... 89
Use of Respite Care ....................................................................................................................... 93
Barriers to Respite Utilization ......................................................................................................94
Help from Family and F rien d s ......................................................................................................96
Caregivers Perceived Difficulty in Asking for H e lp ..................................................................98
Caregivers Frequency o f Self-Care Behaviors ............................................................................ 101
Open Ended Survey Questions .................................................................................................... 104
Conclusions..................................................................................................................................... 113
CHAPTERS
Overview ......................................................................................................................................... 122
Findings from this S tudy ............................................................................................................... 123
The Influence of P o licy ..................................................................................................................126
Theories............................................................................................................................................127
Directions for the F u tu re ................................................................................................................129
REFERENCES ...............................................................................................................................131
APPENDICES
Appendix A -  Lakehead University Research Ethics A pproval................................................152
Appendix B -  Survey Cover Letter .........................................................................   153
Appendix C -  Survey.......................................................................................................................154
Appendix D -  Perceived Stress S c a le ........................................................................................... 168
Appendix E -  Demographic Information o f Caregivers.............................................................171
Appendix F -  Open Ended Survey Responses ............................................................................ 175
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
TABLES
Table Page
2.1 Summary of Aspects o f Different Types o f Respite Care 29
3.1 Sample Response Rates 48
3.2 Random Selection Scores for SPSS Scores 55
3.3 Stages o f Alzheimer Disease 62
4.1 Summary of Significance among the Independent Variables 71
4.2 Independent Samples T-Test for Perceived Stress Score and Length of
Support Group Attendance 73
4.3 Independent Samples T-Tests for Perceived Stress Score and Gender 75
4.4 Independent Samples T-Test for Perceived Stress Score and Age Category 77
4.5 Independent Samples T-Test for Perceived Stress Score for Type of Caregiver 79
4.6 One-Way ANOVA for Perceived Stress Score and Marital Status 82
4.7 One-Way ANOVA for Perceived Stress Score and Employment Status 85
4.8 Independent Samples T-Test for Perceived Stress Score and Living
Arrangements 88
4.9 One-Way ANOVA for Perceived Stress Score and Stage o f Disease 91
4.10 Independent Samples T-Test for Perceived Stress Score and Use of
Respite Care 93
4.11 Independent Samples T-Test for Perceived Stress Score and Barriers to
Respite Utilization 95
4.12 Independent Samples T-Test for Perceived Stress Score and Family Help 97
4.13 Correlation between Perceived Stress Score and Perceived Difficulty in
Asking for Help 99
4.14 Independent Samples T-Test for Perceived Stress Score and Frequency of
Self-Care Behaviors 102
FIGURES
Figure Page
2.1 Heuristic Model o f Stress 43
4.1 Perceived Stress among Alzheimer Caregivers 70
4.2 Number of Years o f  Support Group Attendance 72
4.3 Gender o f the Caregivers 74
4.4 Perceived Stress Scores According to Gender 76
4.5 Age Category o f Caregivers 77
4.6 Perceived Stress Scores According to Age Category 78
4.7 Type of Caregiver 79
4.8 Marital Status o f Caregivers 81
4.9 Perceived Stress Score According Marital Status 83
4.10 Employment Status o f Caregivers 84
4.11 Living Arrangements between Caregiver and Care Receiver 88
4.12 Stage of Alzheimer Disease of Care Receivers 90
VI
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
4.13 Use of Respite Care 93
4.14 Barriers to Respite Care 95
4.15 Have Family Help 97
4.16 Caregivers Perceived Difficulty in Asking for Help 99
4.17 Perceived Stress Score According to Perceived Difficulty in Asking for Help 100
4.18 Caregivers Frequency o f Self-Care Behaviors 101
4.19 Perceived Stress Score According to Frequency o f Self-care 103
Vll
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Chapter 1 
Introduction
Overview.
This experience has been the most difficult thing I  have had to handle. I  fee l very 
lonely at times. This disease has changed our lives in many ways and I  fee l this 
will only get worse. -Alzheimer Caregiver
Caring for someone with Alzheimer disease or a related dementia is a uniquely stressful 
experience due to the irreversible cognitive decline and behavioral problems exhibited by care 
receivers. The inability of care receivers to reciprocate or validate those that care for them 
exacerbates feelings of stress among caregivers. Alzheimer disease and related dementias have 
proven to be long-term chronic diseases with the general life span of this disease ranging from 
one to twenty years with an average of eight years of symptoms (Barclay et al, 1985). Family 
members and friends are most likely to carry out the informal caregiving role and inevitably are 
exposed to an alarming array of adverse consequences. Informal caregivers have a sixty-three 
percent higher mortality rate when compared to non-caregivers (Schulz & Beach, 1999) and are 
at least twice as likely to experience depression (Health Canada, 1997-1998; Canadian Study of 
Health and Aging Working Group, 1994a) and other decreases in physical and mental health 
(Max, Webber, & Fox, 1995; Brodaty & Green, 2000). However, as outlined by the Canadian 
Association for Conununity Care (n.d.), support initiatives are constantly geared to the person 
requiring care while less attention is paid to the person providing care. In light of the importance 
of understanding stress triggers among Alzheimer caregivers, this study specifically investigates
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
factors that influence stress for Alzheimer caregivers who attend support groups. Understanding 
these factors that augment stress for caregivers is becoming increasingly important due to the 
normalization of informal caregivers as a central feature in the national health care system. 
(Romanow, 2002). While there is a wealth of literature that has investigated support groups and 
its influence on reducing the stress levels of Alzheimer caregivers, this study adds to the 
literature by including the independent variables of length of attendance in a support group, 
frequency and type of self-care and outside support systems.
The literature speaks to three compelling reasons as to why there is a need to better understand 
caregivers and their perceived level of stress. The first factor is the growing number of people 
who are being diagnosed with Alzheimer disease and related dementias. Most well known is the 
impact that these diseases have on the aging population. In fact, age is stated to be the greatest 
risk factor of acquiring Alzheimer disease and related dementias (Small et al, 1997). The 
absolute growth of an aging population relative to other segments of the population further 
substantiates the importance of this study. For example, the 2003 Statistics Canada figures show 
that approximately thirteen percent of the Canadian population is over the age of sixty-five. This 
percentage is projected to grow to approximately nineteen percent by 2021. The Canadian 
population over the age of sixty-five has been growing at approximately two to three percent per 
year while the population over the age of eighty-five has been growing at approximately four 
percent per year (Moore & Rosenberg, 2001). As noted by Hooyman & Gonyea (1995) the 
increase in the average life expectancy of the ‘oldest old’ (those eighty-five years and over) is 
likely to be met with an increasing number of people living with multiple physical and mental 
ailments which increases reliance on both formal and informal care. According to the Canadian
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Study of Health and Aging (1994b), one in thirteen Canadians over the age of sixty-five and one 
in three over the age of eighty-five have Alzheimer disease or a related dementia. These 
numbers are projected to grow by over fifty percent in just over two decades (O’Rourke & 
Tuokko, 2000). Perhaps more alarmingly is the recent awareness that Alzheimer disease is not 
exclusively a disease of the aging. An increasing number of people are being diagnosed before 
the age of sixty-five, which is referred to as early-onset Alzheimer disease (Padgen, 2003).
The second factor is the high costs for formal and informal sectors of care which will predictably 
increase as this segment of the population increases relative to other age groups. In comparison 
to other age groups, the age bracket of eighty years and over typically adds the most stress onto 
the Canadian health care system (Statistics Canada, 1999). The net economic cost of Alzheimer 
disease and related dementia care in Canada is estimated to be $3.9 billion annually, with $636 
million of this portion attributable to indirect costs bore by informal caregivers comprised of 
family and friends (Ostbye & Crosse, 1994). This calculation does not account for lost 
opportunity and emotional costs by caregivers which are significant but more difficult to 
measure (Ostbye & Crosse, 1994). Of particular significance is the recent findings from a Health 
Canada report on a national profile of family caregivers which stated that caregivers were found 
in various income strata yet on average still have household incomes below the national average 
(Health Canada, 2002). Although this Health Canada report did not just examine Alzheimer 
caregivers, it generally shows the financial burden felt by the general population of informal 
caregivers.
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
The third factor is the growing support for informal caregivers as an essential component for 
homecare as a normalized feature of the national health care system. The Romanow Report 
signals a significant change in the composition of Canada’s national health care system by 
proposing that homecare services be integrated into the Canada Health Act. Although Romanow 
is referring to a formal homecare service approach, it still reflects a shift in responsibility from 
hospitals and institutions to the home which essentially puts more pressure on the informal care 
sector (family members and friends) who will inevitably continue to provide care. This is a 
result of what Estes (1993) refers to as the “paradox of the demographic imperative.” Advances 
in medicine which has lead to increased longevity has also led to the shrinking availability of 
community and long-term medical services due to growing demand. This has placed growing 
pressure on the informal care sector comprised of family members and friends of those that 
require care. The Romanow initiative may appear to be meeting the needs of the elderly in light 
of the finding that they desire to remain at home for as long as possible (Health Canada, 1997- 
1998), yet this unavoidably puts more pressure on the informal care sector whom is already 
providing 85 to 90 percent of homecare to people in need (Ontario Coalition of Senior Citizen 
Organizations, 2002). An estimated 50 to 80 percent of people with Alzheimer disease in 
Europe and Canada are cared for at home (Bosanquet et al, 1997), by family members and 
friends (Nicoll et al, 2002; Jackson et al, 1991; Malonebeach & Zarit, 1991; Stone, Cafferata, & 
Sangl, 1987; Baumgarten et al, 1992; Kiecolt-Glaser et al, 1991). People with Alzheimer disease 
are commonly cared for by one identified primary caregiver as opposed to a network of people 
(Isenhart, 1992), with female caregivers, primarily spouses and adult daughters providing the 
majority of care (Max, Webber, & Fox, 1995; Rice et al, 1993; Roberts et al, 1999). As
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
indicated by Romanow (2002), “Informal caregivers play an essential role in the delivery of 
homecare services and in the health and care of their families and friends.”
One of the catalysts for a growing reliance on the informal care sector stems from the 1950 and 
1960’s where a process of deinstitutionalization took place. People experiencing Alzheimer 
disease and other mental health problems were transferred out of psychiatric institutions into the 
community or long-term care facilities (Roberts et al, 2000). The twenty-first century continues 
to feel the effects of this trend as care continues to be transferred out of hospitals and mental 
health institutions to the home. These factors coupled with family loyalties have resulted in 
family and friends taking on a substantial responsibility through their unpaid role as informal 
caregivers. Of most relevance is the how the informal care sector has become one of the 
cornerstones of Canada’s health care system in the government’s pursuit of future health care 
sustainability.
This leads to another significant catalyst stemming from the 1990’s where increasing demands 
for healthcare care services has lead to a scarcity of health care resources. In other words, 
increases in life expectancy have not been met with an increase in services and funding. In 
response to this, informal caregivers have been and continue to be the key players in keeping 
those who would otherwise be institutionalized in the community (Brodaty, Green & Koschera,
2003). Informal caregivers play an essential role in the sustainability of Canada’s health care 
system as homecare results in massive costs savings due to decreases in hospital admissions and 
delayed institutionalization (Romanow, 2002). As a result, homecare is commonly described as 
a “cost effective strategy” which can serve to cut back on future health care expenditures
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
(Hollander & Chappell, 2002). However, in light of the adverse consequences of informal care 
provision, the universal homecare initiative may potentially lead to an increase in negative 
caregiving outcomes. The reality behind the universal homecare initiative is it will likely lead to 
an increasing reliance on family and friends causing further deterioration of the informal care 
sector. As stated by Lefley (1987) “caregiving for one group at the expense of another can 
scarcely be considered a desirable mental health objective.”
However, to a certain extent, the Canadian government recognizes the needs among informal 
caregivers. One indication that the government is recognizing the severe stress felt by informal 
caregivers is reflected in the implementation of the Caregiver tax credit for low income earners 
as well as in the recent 2004 federal budget which outlines the allowance of caregivers to claim 
up to $5000 on medical related expenses when looking after a dependent relative. The six week 
Compassionate Leave Program which is also a recent development will likely not apply to 
Alzheimer Caregivers since the narrow definition of what qualifies to be compassionate leave 
renders this program of little help to caregivers of Alzheimer disease and related dementias.
Meeting the needs of Alzheimer caregivers is strongly supported by the Alzheimer Society of 
Canada which is a not-for-profit organization founded over twenty-five years ago (Alzheimer 
Society of Canada, 2004). Besides the national head office, 140 Alzheimer chapters and ten 
provincial organizations are operating across Canada (Alzheimer Society of Canada, 2004). The 
Alzheimer Society takes an inclusive approach and offers support to caregivers who are looking 
after those with related dementias. The three major goals of providing family support, education 
and undergoing research has served to increase awareness of the disease and ease the adverse
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
consequences of care provision. Of most relevance to this study is that the Alzheimer Society of 
Canada represents a symbol of national recognition to an important and overlooked population of 
informal caregivers. The society was formed in response to researchers from the University of 
Toronto and Surrey Place Centre becoming deeply concerned over the lack of available support 
systems for people who suffer from Alzheimer Disease and their families (Alzheimer Society of 
Canada, 2003a). Today, the Alzheimer Society’s mission statement is two-fold; “to alleviate the 
personal and social consequences of Alzheimer Disease” and “promote the search for a cause 
and cure for the disease” (Alzheimer Society of Canada, 2003a). In 1986 the support group was 
officially established and is now one of the most widely used interventions by Alzheimer 
caregivers (Mace & Rabins, 1999; Zarit, Anthony, & Boutselis, 1987; Aronson & Yatzkan,
1984; Barnes et al, 1981; Glosser & Wexler, 1985; Lazarus et al, 1981; Ory et al, 1985; Schmall, 
1984; Steuer & Clark, 1981). The support group provides a safe place for caregivers to receive 
validation, reciprocation and education in a supportive environment.
This study is based on a sample of Alzheimer disease caregivers who attend support groups 
offered by the Alzheimer Society in six Alzheimer Society sites in the Northern Ontario 
jurisdiction. This study seeks to understand the relationship between support group 
characteristics (length of support group attendance), victim characteristics (gender, stage of the 
disease, living arrangements), caregiver characteristics (gender, age, marital status, employment 
status, and relationship to the care recipient ), use of outside assistance (utilization of respite 
care, barriers to respite care, levels of self-care, assistance from family members and friends, 
perceived difficulty in asking for help when stressed) and perceived levels of stress.
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Additionally, this study, through open-ended questions gives caregivers the opportunity to 
outline their experiences as caregivers and their suggestions for future service.
Studies on support groups generally conclude that although rated positively by caregivers, it is 
inconclusive as to whether or not support group attendance helps to relieve adverse 
psychological symptoms. However, a segment of the literature has outlined the benefits of 
support groups on caregivers psychological functioning. Studies by Fung & Chien (2002), 
Otswald et al (1999), Zanetti et al, (1998), & Greene & Monahan, (1989) all demonstrate the 
potential of support group membership in relieving feelings of stress among caregivers.
However, very few identified studies capture the full essence of the support group experience by 
including both caregivers of institutionalized and non-institutionalized elderly and controlling for 
factors such as length of support group attendance, frequency of self-care practices among 
caregivers, and use of outside interventions such as assistance from family and friends and 
utilization of respite care. Only one identified study by Gonyea & Silverstein (1991), was 
identified which examines the relationship between support group attendance on formal service 
use. Other studies by Larrimore (2003) and Cuijpers, Hosman & Munnichs (1996) investigates 
the support group experience among caregivers of institutionalized and non-institutionalized care 
receivers outlining the importance of support groups for caregivers after the care receiver is 
admitted into long-term care. These studies offer a piece of the complex puzzle of the 
experience of Alzheimer caregivers who attend support groups. Examining the larger picture by 
accounting for such factors such as use of respite care help from family and friends, and 
practices of self-care can help to understand the roles that these variables play and how they 
potentially influence perceived stress among Alzheimer support group members.
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Importance of this Study.
This study examines the experience of Alzheimer caregiver support group members in relation to 
their perceived levels of stress. Characteristics of the support group, the caregiver, the care 
receiver, and outside assistance are used as independent variables in the study to outline their 
probable influence on a caregiver’s perceived stress. Additionally, these caregivers are given the 
opportunity to express through open-ended survey questions how they view their role as a 
caregiver, what contributes to their stress, and service ideas that they have for the future. This 
study may provide the Alzheimer Societies across Northern Ontario with information to help 
them better serve those who need help in dealing with the impacts of caring for those with 
Alzheimer disease.
The Purpose Statement.
The purpose of this survey study is to analyze the experience of Alzheimer support group 
members by examining the various factors which potentially contribute to levels of perceived 
stress. The dependent variable (caregiver stress) is defined in this study by ten signs as identified 
by the Alzheimer Awareness Campaign (1999). The signs are as follows: denial that the person 
has the disease, anger at the person with the disease and others, emotional sensitivity, social 
withdrawal, depression, lack of sleep, lack of concentration, exhaustion, anxiety and an increase 
in health problems. Any or all of these signs may be experienced.
The independent variables used in this study are support group characteristics (length of support 
group attendance), victim characteristics (stage of the disease, living arrangements), caregiver 
characteristics (gender, age, marital status, employment status and relationship with the care
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
recipient), and use of outside interventions (respite care, barriers to respite care, practices of self- 
care, help from family and friends, and perceived difficulty in asking for help when feeling 
stressed).
Theoretical Perspectives.
Structural Functional Theory. In formulation of an umbrella theoretical perspective for the study 
of Alzheimer caregiver support group members and their perceived levels of stress, Structural 
Functionalism provides a useful model. This positivist theory is outlined in the early works of 
Talcott Parsons (Jaffee, 2001) and has been used in the social sciences to examine social 
organizations. This theory has been applied to frame the experience of informal caregiving 
networks (Doress-Worters, 1994).
This theory is used to study how events or people operate within a larger system and how they 
work to maintain balance within that system. According to Parsons, networks within the larger 
social order are responsible for carrying out certain functions. For example, historically the 
government has been responsible for ensuring the sustainability of health care. Thus, when this 
becomes threatened, changes take place to regain balance. Society is constantly changing and 
growing, thus adaptations and temporary disruptions take place to keep society in equilibrium 
(Neuman, 2003). For example, due to our struggling health care system, informal caregivers are 
valued because their role fulfills what formal healthcare struggles to carry out. As a result of a 
continued threat to the sustainability and longevity of universal health care, a shift in the national 
agenda is taking place which puts more emphasis on informal care. Consequently, the further 
reliance on home care to maintain health care costs coupled with the socially ingrained
10
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
expectation of familial obligation has made informal care a socially accepted and encouraged 
phenomenon. As mentioned earlier, this places undue pressure on those with family members 
and friends who need this type of care. Additionally, the number of informal caregivers in 
Canada is estimated to be at the three million mark and projected to increase substantially 
(Canadian Association of Community Care, 2001).
This theory holds that I would expect my independent variables (support group characteristics, 
caregiver and care receiver characteristics, and use of additional outside support) should 
influence or explain my dependent variable (perceived stress). The importance of understanding 
the various factors which contribute to stress among Alzheimer caregivers is increasingly 
important as a result of the current shift in Canada’s healthcare system which places increasing 
reliance on the informal care sector. As a result of structural functionalism, societal expectations 
and political agendas tend to shape the caregiving experience creating a negative outcome due to 
the lack of connection between the formal and informal systems. Additionally, the shift of 
emphasis from formal to informal care can be understood within a structural functionalism 
theoretical framework.
Feminist Theory. This study uses feminist theory to add understanding to the significant role 
that women play in the caregiving system for Alzheimer disease and related dementias. This 
theory grew out of the feminist movement of the nineteenth century but was not widely 
incorporated into studies of the social sciences until the late 1980’s (Neuman, 2003; Hooyman & 
Gonyea, 1995). As indicated by Hooyman & Gonyea (1995), in their extensive literature on 
caregiving as a gendered role, feminists began to challenge the expectation of women as
11
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
caregivers in the 1960’s and 1970’s. Population aging coupled with the societal expectation of 
informal care provision which continues to be driven by policy has led to this increase in 
research (Hooyman & Gonyea, 1995). The division of labor as shown by the ingrained 
responsibilities of men and women became social norms following the industrial revolution 
(Erhreneich, 1983) and has created lasting impacts as evidenced by current caregiving research 
which outlines the dominant role of women as care providers.
Feminist theory shapes much of the caregiving literature as studies generally conclude that 
women continue to provide the role of caregiving in the private sphere despite gains in 
participation in the public sphere which makes their daily living experiences multi-faceted and 
challenging. Male caregivers are growing in number yet the level of expectation between 
genders to perform the role of caregiving is far from balanced. While societal expectations for 
men may be changing, they are not expected to provide care all by themselves (Hooyman & 
Gonyea, 1995). For example, men are more likely to make financial sacrifices through their 
support initiatives while women are more likely to sacrifice themselves (Dailey, 1988).
Feminist theory is used extensively in the caregiving literature as indicated in studies by Doress- 
Worters (1994), Harrison & Neufeld (1996), Hoffmann & Mitchell (1998), Logsdon & Robinson 
(2000), Strang (2001) and Hooyman & Gonyea (1995) whom all use a feminist approach to 
study the informal caregiving experience and its various impacts on women.
This theory focuses on the role of women in society, which is shaped by particular assumptions 
and expectations derived from a long history of women providing the nurturing role of care. As
12
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
a product of historical and political forces, the responsibility of caregiving has been assigned 
largely to women (Miller, 1976). Informal care is an example of the “privatization of care” as a 
shift has taken place from societal responsibility to a private responsibility (Hooyman & Gonyea, 
1995), which primarily affects women as care providers. Although women have gained a 
significant amount of independence over the last several decades as exemplified in the workforce 
and increasingly in the policy arena, women are finding themselves in multiple and taxing roles 
as the expectation of providing care still weighs largely on their shoulders. Providing unpaid 
informal care in the home is still viewed as “women’s work” (Stoller, 1993). As described by 
sociologist, Robert J. Brym (1998) as a society we have come to look at roles as either being 
inherently “masculine” or “feminine” which strongly influences how people view themselves 
and how they interpret their world. Female spouses provide the majority of informal care to 
people in their later years (Glasgow, 2000), including those suffering from Alzheimer disease 
and related dementias. This responsibility o f care largely falls on the shoulders of wives, 
daughters and daughters-in-law (Aronson, 1998), and due to the unwavering socially ingrained 
expectations of women as caregivers, this appears likely to remain (Hooyman & Gonyea, 1995). 
As applied to my study, this theory particularly speaks to the dependent variable of perceived 
stress which may be influenced or explained by the gender characteristics of my independent 
variables.
Contextual Fluiditv. Contextual Fluidity is a model of helping in which the person who gives 
help is embedded in the same system as the person receiving help. Other practice theories focus 
on formal helping in which the helper is outside and objective to the caregiving system. Since 
informal caregivers work in the same system, a theory was needed that addressed how to provide
13
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
help from within. This emerging practice theory founded by Nelson & McPherson (1985, 2003,
2004) grew out of the realization that there is a missing link in social work’s current spectrum of 
practice theories. The positivist, problem-focused approaches to giving help perpetuates a 
hierarchical helping process. Contextual Fluidity acknowledges that equal partnerships between 
people giving and receiving help coupled with acknowledging the relevancy of the context of 
the person in need is essential for mutual understanding and a mutual helping system to be 
created (Nelson & McPherson, 2003). Trying to understand an individual outside of their 
context posits the inevitable outcome of not fully understanding them to the degree possible.
As applied to my study, this theory holds that one would expect the independent variables 
(support group characteristics, caregiver and care receiver characteristics, and additional outside 
support) to influence or explain the dependent variable (perceived stress) because the Contextual 
Fluidity theoretical framework emphasizes the need to understand someone by taking into 
account the various social and environmental factors which ultimately influence their experience. 
Investigating a range of factors which speaks to the various aspects of the informal care system 
compliments the driving force of the Contextual Fluidity theoretical framework.
14
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Chapter 2 
Review of the Literature
Introduction.
There is an extensive and growing body of literature that deals with different aspects of the 
Alzheimer disease experience. This literature includes research on various forms of support to 
meet the needs of those both providing and receiving care. One of the most favored caregiving 
interventions is the support group which enables caregivers to receive education, validation and 
reciprocation in a supportive environment. A variety of characteristics of support groups are 
explored in the literature to understand the caregiving experience at a broader level. A large 
emphasis is placed on caregiver characteristics (gender, age, type of caregiver, employment 
status, marital status), care receiver characteristics (living arrangements, stage of disease), while 
smaller emphasis has been placed on support group characteristics (length of support group 
attendance) and use of outside interventions (e.g., use of respite care).
On this later point there has been a considerable amount of attention given in the literature on the 
impact of respite care because it was perceived as a pivotal point in delaying institutionalization, 
and meeting the psychosocial needs of both those providing and receiving care. However, 
literature on respite care displays ambiguous findings in terms of its positive influence on any of 
its desired objectives. Despite these indefinite findings, growing evidence suggests that respite 
care is one piece of a complex puzzle which may potentially influence the caregiving experience. 
Additionally, multiple intervention strategies have been shown to decrease perceived levels of 
stress. Since utilization of support groups and respite care falls under the category as a multiple
15
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
intervention, this study initially placed more emphasis on the connection between support group 
attendance and utilization of respite care justifying the in depth literature presented on this 
formal service. Nonetheless, this study supports the research findings that respite care is an 
underutilized service which is reflected in the current low utilization rates within the sample used 
in this study. Thus, while initially researched as a central feature to caregiving, it became 
necessary to explore respite care as only one of the array of independent variables related to 
caregiver stress. Looking into the multitude of factors which potentially influence the role of 
Alzheimer care helps to explain the overall caregiving experience to a greater degree.
Independent Variables.
This section briefly explains background information on support groups and is followed by a 
review of the literature as related to the following independent variables: support group 
characteristics (length of support group attendance), caregiver characteristics (gender, age, 
caregiver status, marital status, employment status), care receiver characteristics (stage of 
disease, living arrangements), and outside assistance (use of respite care, the influence of respite 
barriers, help from family and friends, perceived difficulty in asking for help when stressed, and 
self-care). The independent variables, age, caregiver status, and marital status are grouped 
together as a result of the clustering of these variables in the literature.
Support Groups Background Information.
Support groups were introduced in the late 1970’s (Fuller, Evans, & Massam, 1979; Hausman, 
1979; Silverman, Kahn, & Anderson, 1977). In response to the growing awareness of the stress 
associated with the role of Alzheimer caregiving, the support group intervention was adopted a
16
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
decade later in 1986 by the Alzheimer Society of Canada. The literature confirms that caregiver 
support groups exist with the intent of lessening the degree of caregiver burden, of teaching 
valuable coping skills, of allowing the caregiver a break from caregiving duties, and of providing 
emotional and practical support (Biegal, Sales, & Schulz, 1991; Gonyea, 1989; Toseland & 
Rossiter, 1989; Toseland, Rossiter, & Labrecque, 1989). Although inconsistencies have been 
found in the effectiveness of support groups in terms of eliminating objective measures such as 
stress and depression, support groups have been found to be successful in helping caregivers gain 
awareness about what to expect as the disease progresses, how to seek out community resources 
and how to effectively manage their role as a caregiver. Furthermore, participation in a support 
group enables caregivers to increase their social networks and have the opportunity to experience 
reciprocation, validation and reassurance from other caregivers. These outcomes have special 
value in light of the fact that care receivers’ ability to reciprocate becomes compromised due to 
the nature of the disease (Adler, Kuskowski, & Mortimer, 1995). Alzheimer support groups 
comprise a significant portion of support groups that are offered to caregivers due to the growing 
number of people who are faced with the devastating and complex impacts of this disease 
(Gonyea, 1989, 1990).
Support groups are rated quite highly by caregivers that attend them (Gonyea, 1989; Gonyea, 
1990; Gonyea & Silverstein, 1991; Green & Monahan, 1987; Green & Monahan, 1989; Haley, 
1989; Toseland & Rossiter, 1989; Toseland, Rossiter, & Labrecque, 1989) but objective 
measures have not shown any consistent psychological benefits as measured by standardized 
tools (Haley, Brown, & Levine, 1987; Lazarus et al, 1981). In a study by Toseland & Rossiter 
(1989), fifty-six participants are randomly assigned to experimental or control group conditions.
17
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Findings conclude that there is no significant difference on support group attendance on 
perceived burden. However, studies by Zanetti, Metitieri, Bianchetti, & Trabucchi (1998), and 
Ostwald et al (1999), demonstrate signifieant decreases in perceived stress when compared to 
matched controls. Reasons for these mixed findings as indicated by Smith et al (1991) may be 
that the objectives of these groups may not eoincide with earegiver needs. Despite the 
appropriateness of content, Cuijpers, Hosman, & Munnichs, (1996) outline that support groups 
tend to be more effective for earegivers who are caring for care receivers who display signs of 
apathy and reside in long-term care. Additionally, in a study by Garity (1997) which compares 
stress levels among male and female support group members, female earegivers experience more 
burden and personal strains when compared to male support group members.
Attendees of support groups include caregivers of institutionalized and non institutionalized 
elderly and of care recipients who are deceased. It has been a common misconception that the 
negative consequences of caregiving diminish following institutionalization or death of the care 
recipient (McCarty, 1996). Caregivers usually remain involved in the care of their loved ones 
following institutionalization (Jensen, 2001). A process of adjustment takes places following 
institutionalization of the eare recipient and many issues may surfaee such as guilt, grief, 
depression, and anxiety around the quality of care that the care receiver is getting. This is 
supported in a study by Zarit & Whitlatch (1992) and Beck (1998). Following the 
institutionalization of care receivers, caregivers feel a decrease in overload and tension and 
inereases in well being; however, other stress related symptoms remain unchanged. 
Consequently, earegivers conunonly eontinue to feel the stressful effects of there role regardless 
of institutionalization of the care receiver. In addition, following the death of a care reeeiver.
18
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
caregivers may reflect on their role as a care provider and may need further support as they 
undergo the grieving and reflection process (Petronela-Juozapavicius & Weber, 2001).
Following the death of the care receiver, earegivers have been shown to display an increase in 
well-being (MeGartland Rubio et al, 2001), or to show higher levels of depression when 
compared to current caregivers (Bodnar & Kiecolt-Glaser, 1994). Consequently, many other 
faetors potentially influence the post-caregiving experienee and need to be studied further in 
future investigations.
Support Group Characteristics.
Length of Support Group Attendance. Gonyea & Silverstein (1991) introduce the conneetion 
between characteristics of support groups and formal service utilization among Alzheimer 
caregivers. One of these support group characteristics is length of support group attendanee. 
These authors compare 301 Alzheimer Disease families who attend support groups with seventy- 
five non-support group member controls. Their findings conclude that caregivers who have been 
attending support groups for a longer period of time use more formal services. However, their 
study did not look at the linkage between length of support group attendance on psyehological 
measures. As a result, it is the work of Gonyea and Silverstein (1991) that influenced the 
inelusion of psychological measures as a support group eharacteristic in this present study. 
Specifically, this present study takes Gonyea & Silverstein’s (1991) findings one step further and 
looks at the relationship between length of support group attendance and perceived levels of 
stress among caregivers.
19
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Another convincing argument for the inclusion of length of support group attendance as an 
independent variable arises from the high degree of variability of both eontent and type of 
Alzheimer support groups. As a result, length of support group attendance turns out to be one 
feature of support groups that is common to all regardless of content and type.
Caregiver Characteristics.
Gender. Although the twenty-first century is marked by a continued emphasis on the gained 
independence of women, the earlier socialized trends are still strongly imbedded in the North 
Ameriean eulture. Although these socializing influences may not be as visible, they still have a 
substantive effect on the population of female informal earegivers. Female spouses and adult 
daughters of those in need most often provide care (Max, Webber, & Fox, 1995; Rice et al, 1993; 
Roberts et al, 1999). Although males are increasingly taking on the caregiving role, females still 
largely outnumber males in the subpopulation of informal caregivers since providing unpaid care 
to those in need is still viewed as “women’s work’’ (Stoller, 1993). When comparisons have 
been made, women and men tend to have different caregiving experiences. For example, female 
caregivers are more likely to experience stress in their role as eare providers (Bass et al, 1994; 
Biegel, Sales & Schulz, 1991; George & Gwyther, 1986; Pruchno & Resch, 1989; Schulz et al, 
1993; Barusch & Spaid, 1989). Furthermore, female caregivers are less likely to seek help 
unless they feel they are able to reciprocate (Logsdon & Robinson, 2000; Belle, 1982). An 
ethics of care as outlined by Henderson & Allen (1991), explains how the psychological 
development of women influences the caregiving experience for females. Women are socialized 
to meet the needs of others and often define themselves through the happiness and health of their
20
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
family. As a result, women may experience guilt if they try to meet their own needs before 
meeting the needs of others.
Additionally, Harrison & Neufeld (1996) propose that women generally want to avoid conflict 
within the family and consequently take over the caregiving role without challenging this 
gendered expectation. As a result, women may develop the perception that maintaining healthy 
relationships takes precedence over their personal needs (Harrison & Neufeld, 1996). Stemming 
from this, women as caregivers often try to meet other people’s needs before meeting their own 
and do not feel entitled to leisure activities (Strang, 2001; Deem, 1986; Harrington, Dawson & 
Bolla, 1992).
The Clustered Characteristics: Age. Marital Status and Tvpe of Caregiver. As caregivers age, 
their chances of acquiring their own chronic illnesses unavoidably increases making the aet of 
caregiving much more challenging. According to the Canadian Study of Health and Aging 
(1994a), people with dementia are typically cared for by a spouse who are elderly themselves.
As a result of this age factor, caregiving for a spouse tends to be much more difficult (Pruchno & 
Resch, 1989; Rankin, Haut, & Keefover, 1992). Due to advanced age, spousal caregivers may 
have poorer cognitive functioning (Caswell, et al, 2002), are more likely to be in poorer physical 
health and generally partake in fewer social activities (Barber & Pasley, 1995; Barnes et al,
1992; Cohen et al, 1990). This commonly leads to feelings of social isolation which potentially 
leads to increased feelings of stress (Antonucei, 1989; Shumaker & Brownell, 1984). 
Consequently, spousal caregivers are commonly referred to as the “hidden victims’’ of Alzheimer 
disease and related dementias (Zarit, Orr & Zarit, 1985). According to the Canadian Study of
21
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Health and Aging (1994a), 69 percent of the spousal caregivers in this study do not make use of 
formal sourees of support. This is of coneem because studies indieate that social support goes 
hand in hand with improved physical health and well-being (Cohen & Willis, 1985; Pierce, 
Sarason & Sarason, 1996). Spouses generally receive minimal help from formal services and 
other family members (O’Byrant, Straw, & Meddaugh, 1990) leading to heightened difficulties 
in their role.
Besides spousal caregivers, the literature also outlines the role of adult children as caregivers. 
According to Gonyea (1995), it is this generation that is the most involved in maintaining contact 
and unity across generations. Adult children caregivers are more likely to be apart of the 
sandwich generation (looking after children and parents simultaneously), and fulfill multiple 
roles whieh may lead to role strain. Aecording to Fitting et al ( 1984), younger caregivers are 
more likely to show signs of resentment and unhappiness than older caregivers. However, they 
are more likely to utilize services (McCabe et al, 1995) and institutionalize the care recipient 
when compared to spousal caregivers (MeFall & Miller, 1992) which may potentially lead to 
decreases in stress. Nevertheless, in summary, earegiving can be stressful for spouses and adult 
children for a variety of both similar and different reasons.
Emplovment Status. Employment adds a twist into the already complex and busy role in whieh 
many caregivers find themselves involved. Whether or not employment eases or adds adversity 
to the earegiving role remains ambiguous in the literature. On one hand, earegivers who are 
employed often have to make sacrifices to fulfill earegiving duties. The results of an employee 
survey in 1989 indieates that in comparison to employed non-caregivers, employed caregivers
22
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
miss 50 percent more days of work and are 40 percent more likely to state that caregiving 
interferes with their work in the formal sector (Scharlach & Boyd, 1989). This holds true in two 
recent profiles on Canadian caregivers by Statistics Canada. These reports on employed 
caregivers indicate that earegiving duties affect the caregivers work in the formal sector 
(Cranswick, 1997, Statistics Canada, 2002). As a result, the competing demands of employment 
and caregiving often interfere with each other (Aneshensel et al, 1995; Barling, MacEwen, 
Kelloway, & Higginbottom, 1994; Gignac, Kelloway, & Gottlieb, 1996; Gottlieb, Kelloway, & 
Fraboni, 1994; Neal, Chapman, Ingersoll-Dayton, & Emlen, 1993; Scharlach, 1994). Caregivers 
may even be forced to retire as a result of the competing demands of the workplace and informal 
caregiving duties.
On the other hand, various studies which have examined the impaet of employment on 
caregiving duties indicate that employment does not have a direct or significant impact on 
aversive psychological symptoms (Dautzenberg et al, 2000; Edwards et al, 2002; Orodenker, 
1990; Martire & Stephens, 2003; Lee, Walker & Shoup, 2001). Reasons for this are summarized 
by Martire & Stephens in their research on adult daughters who are employed and provide care 
to a parent in need. Findings conclude that holding these two roles can reap many benefits. For 
example, caregivers who have multiple roles may experience mental health benefits from having 
greater access to rewards attached to these roles leading to positive feelings from increased 
productivity. Coinciding with this perspective, in comparison to non-employed caregivers, some 
studies show that employed caregivers experience less caregiver strain and better emotional 
health (Brody et al, 1987; Giele, Mutschler, & Orodenker, 1987; Miller, 1989; Skaff & Pearlin, 
1992; Stoller & Pugliesi, 1989).
23
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
As outlined by Edwards et al (2002), due to conflicting findings of the effects of employment on 
caregiving and the mental health of caregivers, it is safe to assume that all caregivers adapt 
differently to having multiple roles. A caregiver’s experience in one role may carry over to the 
other role. Thus negative work experienees and lack of support from employers may lead to 
inereased strain and role overload while caregiving and vice versa (Edwards et al, 2002; Martire 
& Stephens, 2003).
Since women oceupy the majority of caregiving roles, the majority of studies which examine the 
effect of multiple roles involve the experience of women. W omen’s historical role of being sole 
care providers has carried to a lesser, yet still significant degree to the present. An increasing 
amount of women hold jobs in the formal seetor; yet are still held responsible to provide unpaid 
care to family members in need (Joseph & Hallman, 1998). Research by Hooyman & Gonyea 
(1995) note that although the workplace has seen a dramatic increase in women, policies within 
the workplace has not ehanged along with this trend. For example, currently no policies exist 
which fully meet the demands of women who occupy both roles. Furthermore, employment does 
not significantly affect a daughter’s assistance to a parent while it significantly decreases 
assistance from a son to his parent (Health Canada, Winter 1997-1998; Dautzenberg et al, 2000). 
This coineides with caregiving expectations in relation to gender as women are generally 
expected to provide care themselves while it is more socially acceptable for men to receive 
assistance with caregiving duties (Hooyman & Gonyea, 1995).
24
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Care Receiver Characteristics.
Stage of the Disease. There is overwhelming evidence in the literature to support the hypothesis 
that the stage of the disease that the care receiver is in has an effect on the earegiver’s 
experience. As Alzheimer disease progresses, a decrease in cognitive ability takes plaee which 
essentially leads to physical and behavioral changes among care receivers. While the early stage 
of Alzheimer disease is charaeterized by mild forgetfulness, poor eoncentration, mild 
coordination problems and diffieulty making conversation, this becomes exasperated in the 
middle and late stages of the disease (Alzheimer Society of Canada, 2003b). The middle stage is 
generally eharacterized by an inability to recognize family and friends, disorientation of time and 
place, daily living impairments (impaired ability to eat, dress, ete, independently), restlessness, 
mood ehanges, and a change in appetite and sleep patterns (Alzheimer Society of Canada, 
2003b). The later stage is characterized by a continued loss of cognitive and physical abilities to 
the point where the Alzheimer victim becomes immobile and unable to speak. As a result of 
progressive cognitive and behavioral changes, the care receiver becomes unable to display 
validation or reciprocation to the earegiver. Thus, the relationship between the caregiver and 
care receiver becomes increasingly unilateral leading to increased stress (Aneshensel, Pearlin, & 
Schuler, 1993). Needless to say, the impacts of the disease on those who give and receive care 
are devastating. Caregivers generally provide care to those with Alzheimer disease throughout a 
significant duration of the disease (Clybum et al, 2000).
Although stress is experienced by caregivers who are earing for someone in the early stages of 
the disease, stress generally increases in the middle and late stages. Behavioral problems which 
characterize the middle and late stages of the disease are eommonly assoeiated with elevated
25
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
stress levels and often leads to institutionalization of the care recipient (Swearer, 1994). Several 
studies support the notion that behavioral problems exhibited by care receivers lead to increases 
in stress (Baumgarten, 1989; Deimling & Bass, 1986; Eagles, Craig, & Rawlinson, 1987; George 
& Gwyther, 1896; Gilleard et al, 1984; Hamel et al, 1990; Kieeolt-Glaser et al, 1987; Poulshock 
& Deimling, 1984; Pruchno & Resch, 1989; Wilder, Teresi, & Bennett, 1983; Bedard et al, 1997; 
Chappell & Penning, 1996; Stuckey, Neundorfer, & Smyth, 1996; Irvin & Aeton, 1997; Coen et 
al, 1997). For example, in a study by Chappell & Penning (1996) which examines specific 
behavioral problems of care reeipients with dementia, the symptoms of aimlessness, aggressive 
behaviors, forgetfulness, and restlessness which are characteristic of the middle to late stages of 
Alzheimer disease are correlated with increased feelings of burden.
In addition to behavioral problems among care receivers, the caregivers pereeived inability to 
handle these problems also leads to increased stress (Baumgarten, Battista, Infante-Rivard, 
Hanley, Becker, & Gauthier, 1992; Gallagher-Thompson, Brooks, Bilwise, Leader, &
Yeasavage, 1992; Montgomery & Kosloski, 1994; O’Donnell, Drachman, Barnes, Peterson, 
Swearer, & Lew, 1992; Pruchno, Michaels, & Potashnik, 1990; Teri, Rabins, Whitehouse, Berg, 
Reisberg, Sunderlans, Eichelman, & Phelps, 1992; Winogrond, Firk, Kirsling, & Keyes, 1987; 
Winslow, 1997).
Living Arrangements. Although Alzheimer earegiving is a particularly taxing experience, the 
majority with this disease are cared for in the eommunity. Among Canadian women and men 
aged sixty-five and over, only 7.3 pereent and 3.7 pereent respectively live in long-term eare 
(Moore and Rosenberg, 2001). Hence, the majority of people who suffer from Alzheimer
26
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
disease and related dementias continue to live in the community and are cared for by family 
members and friends (Jackson et al, 1991; Malonebeach & Zarit, 1991; Stone, Cafferata, & 
Sangl, 1987; Baumgarten et al, 1992; Kiecolt-Glaser et al, 1991). Overwhelming evidence 
indicates that caregivers who reside with the care recipient will experience more stress than care 
recipients who do not reside with the caregiver (Bass et al, 1994; Biegel, Sales & Schulz, 1991; 
George & Gwyther, 1986; Pruchno & Resch, 1989; Schulz et al, 1993; Aneshensel, Pearlin & 
Schuler, 1993; Zanetti et al, 1997; Zarit & Whitlaeh, 1992). In a population based study by 
Grafstrom et al (1992), it is hypothesized that dementia caregivers who live with the care 
reeeiver experience a high degree of stress and burden. Furthermore, Alzheimer caregivers who 
live with a care receiver who is in the later stages of Alzheimer disease experience more anxiety 
and depression when compared to the general population (Meyers, et al, 1984; Bland, Newman 
& Orm, 1988).
Nevertheless, the elderly eommonly express the desire to “age in place”, meaning they wish to 
remain in the community for as long as possible (Health Canada, 1997-1998; National Advisory 
Council on Aging, 1986). This includes the sub-population of Alzheimer care receivers (Schulz 
et al, 2002). Similarly, informal caregivers (spouses and adult children), express the desire to 
care for their loved ones in the community, only resorting to long-term care when all coping 
strategies have been exhausted. In the recent report by Health Canada (2002) on family 
caregivers, as few as nine pereent of informal Canadian caregivers feel that their loved ones 
would be better cared for in an institution. Even at the breaking point, the step from community 
to institutionalized care is usually taken with undiminished reluetance (Brody, 1995; Wenger, 
Seott, & Seddon, 2002). Informal caregivers eontinue to provide eare at home for as long as
27
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
possible (Armstrong, 2000; Mittelman et al, 1996; Chenoweth & Spencer, 1986; Morycz, 1985), 
even when they are risking their own health and well-being (Deimling & Bass, 1986; George & 
Gwyther, 1986; Haley et al, 1987; Moritz, Kasl, & Berkinan, 1989). In fact, dementia caregivers 
are at an increased risk of acquiring serious mental health problems (Cuijpers, Clemens & 
Munnichs, 1996) as well as physical health problems (Petronela-Juozapavicius & Weber, 2001) 
such as sleep disorders, cardiovascular disease chronic fatigue and hypertension (Bums et al, 
1996). Not surprisingly, caregivers report seeking medical care on a frequent basis (Draper et al, 
1992; Kiecolt-Glaser, et al, 1991). In summary, although caregivers may want to continue to 
provide eare at home, it appears to have a devastating effect on their mental and physical health 
and well-being.
The use of outside interventions.
Use of respite care. Respite care is a specialized program designed to allow caregivers to have a 
break while care receivers acquire supervised care. Respite care has the objectives of lessening 
the adverse consequences of care provision (Rosenheimer & Francis, 1992). As identified by 
Gottlieb & Johnson (2000), respite may enable caregivers to stay in their role longer which may 
delay institutionalization (role endurance) or may be used as a stepping stone into 
institutionalized eare (role-bridging).
Respite care generally falls into three categories: in-home respite, day programs and institutional 
respite care. Table 2.1 provides a summary of the literature on these three types of respite 
programs. This includes some of the pros and cons of each type of respite program along with 
information on caregiver utilization and preferences.
28
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Table 2.1; Summary of Aspects of Different Types of Respite Care
Type of Description Pros Cons Caregiver
Respite Utilization and
Program Preference
In-Home A service in which Caregivers do It is usually the Utilization is
Respite health care not have to most eostly form high compared
workers, support worry about of care and may to other forms
workers, or respite respite not always be of respite
volunteers provide preparation and readily available. (Family
basie nursing and the effects of Caregiver
personal care. changing the Alliance, 1997)
housecleaning environment on
and/or the eare receiver. Most preferred
visiting/supervision Hours may be (Montgomery,
in the caregivers or predetermined 1988; Lawton,
eare receivers by caregiver. Brody, &
home. providing more Saperstein, 
flexibility. 1989b; Roberts, 
Browne, & 
Denton, 1995; 
Ashworth 
2000).
29
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Day Programs Care is provided in Ideal for Preparing care Medium
a designated caregivers who reeeiver for out-
facility where a are working or of- home care can
combination of need an be quite time
basic care, meals extended break consuming and
and activities are during the day. take away from
provided during Set cost is the respite
designated hours generally lower experienee (Berry,
during the day. than in-home or Zarit, & Rabatin, 
institutionalized 1991).
respite.
Institutional Temporary “round The fixed Care receivers Utilization is
Respite the cloek” care that extended break may show low
is provided for a that this care increased
fixed period of offers tends to behavioral (Canadian
time in long-term relieve adverse problems/agitation Study of Health
care faeilities. psychological initially upon the and Aging
symptoms of return home Working Group,
caregivers (Aldrch & 1994a).
during periods Menkoff, 1963;
of respite Lieberman, 1983;
(Larkin & Hirsch et al.
Hopcroft, 1993; 1993).
30
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Homer and 
Gilleard, 1994; 
Grasel, 1997).
Respite eare and support groups when used individually are identified as unsuccessful 
interventions in studies by Chappell et al (2001) and Brodaty et al (2003) respectively. This 
finding eoupled with the eonclusion that the mere availability of serviees does not guarantee 
utilization has given rise to the importance of providing a more eomprehensive system of care 
(Lawton, Brody & Saperstein, 1989b; Strang & Haughey, 1999) comprised of multiple 
intervention strategies that aim to work through barriers to respite utilization. To date, various 
studies that integrate multiple intervention strategies are proving to be effeetive in aehieving the 
desired outcome (Bourgeois, Schulz, & Burgio, 1996; Lawton, Brody, & Saperstein, 1989; Cox, 
1997; Greene & Monahan, 1989; Haley, 1989; Mohide et al, 1990; Toseland, Labreeque,
Goebel, & Whitney, 1992). Furthermore, multiple intervention strategies have been shown to 
decrease perceived levels of stress (Acton & Kang, 2001), improve caregiver quality of life, 
increase satisfaction with nursing care (Mohide, et al, 1990), and delay institutionalization 
(Mittelman, Ferris, Shulman, & Levine, 1996). Coupled with providing a comprehensive system 
of care is the need to provide a variety and flexible array of services. Providing services that 
foster diversity as opposed to offering care in an inflexible and rigid manner tends to be more 
effective in achieving the desired outcome (Chiverton & Caine, 1989; Lovett & Gallagher, 1988; 
Mittelman et al, 1996; Zarit, Anthony, & Boutselis, 1987). Zarit et al (1993) document that rigid 
and inflexible serviee provision may create more harm than having no services.
31
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Barriers to Respite Care. Although caregivers identify the need for respite (Caserta et al, 1987; 
Mace, 1986) and rate the service quite positively, utilization rates are generally low (Canadian 
Study of Health and Aging Working Group, 1994a; Wenger, Seott, & Sendon, 2002; George, 
1998; Gibson et al, 1996; Lawton, Brody, & Saperstein, 1989a; Oktay & Volland, 1990; 
Kosloski, Montgomery, & Youngbauer, 2001; Saperstein, 1988; Smyer & Chang, 1999; Caserta 
et al, 1987; Wright, 1993; Stone, Cafferata, & Sangl, 1987; Dorfman et al, 1998; Logan & Spitz, 
1994; Malone Beach et al, 1992; McCabe et al, 1995; Winslow, 1997). As a result, reasons for 
low utilization of respite care have been explored extensively in the literature. An increasingly 
substantiated conclusion is that available services do not meet the diverse needs of the earegiving 
clientele (Middelman et al, 1993). Most literature focuses on the barriers that impinge on the 
utilization of such services. Some of these barriers have been identified as lack of knowledge of 
services, the negative feelings that aceompany the mere contemplation of the use of services 
(e.g., feelings of guilt whieh may lead to difficulty in asking for help, worrying that the care 
receiver will not receive the care they need, refusal of the care receiver to use respite), lack of 
funds to afford the out-of-pocket costs that respite usually requires, and problems with 
accessibility of respite due to struetural barriers (e.g., transportation problems, and government 
enforced “red tape”). In the present study the barriers that are examined are: lack of knowledge, 
guilt, and financial and other structural barriers.
Lack of Knowledge
To overcome the barrier of lack of knowledge, the literature almost exclusively examines this in 
terms of formal service providers educating informal caregivers about formal services. This is a 
top down approach which carries the assumption that educating caregivers is the key to increases
32
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
in service utilization. Although, this appears to be true as indicated in the literature, this 
approach provides a much narrower window on the findings of the impact of knowledge about 
Alzheimer disease on the caregiving experience. This unilateral approach from formal to 
informal care does not allow Alzheimer earegivers to edueate formal caregivers on appropriate 
practical services which may yield more benefits. Even though an emphasis on formal edueation 
is limited, the findings are still instruetive in terms of types of formal care and the impact of 
education on Alzheimer earegivers.
For example, the literature emphasizes that dementia caregivers often lack information on 
available serviees (Della-Buono et al, 1999; McCabe et al, 1995). Properly educating caregivers 
on available services has been linked to increased service use (Roberts et al, 2000). According to 
Damon-Rodriguez et al (1998), being aware of available serviees strongly increases service use 
when eompared to other faetors such as health status or available finanees.
Interventions that take plaee in the earlier stages of Alzheimer disease have been shown to be 
more effective in reducing adverse psychological symptoms among caregivers and delaying 
institutionalization of care reeeivers (Mittelman, Ferris, Shulman & Levine, 1996; Chu et al, 
2000; Mohide, Pringle, & Streiner, 1990). For this reason, there is a need for caregivers to be 
educated at an early stage of the availability and benefits of using respite serviees (Lawton, 
Brody, & Saperstein, 1991). However, caregivers generally do not utilize respite until the later 
stages of their caregiving experienee, when it is absolutely necessary such as following a crisis 
and/or emergency situation (Lawton, Brody & Saperstein, 1989a; Morgan et al, 2002; Fine & 
Thompson, 1993; Nankervis et al, 1997; Vetter et al, 1998). Unfortunately, respite is found to be
33
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
less effective for addressing these acute situations and tends to be more effective before 
caregiving intensifies. In a study by Deimling (1991) that compares the effectiveness of respite 
between caregivers of stable and declining dementia patients, caregivers of stable dementia 
patient’s exhibit decreased scores in the psyehological symptoms of depression and strain and a 
decrease in health problems following the respite experience. As identified by Brodaty & 
Greshman (1992) in their study on temporary institutional respite, it is noted that respite needs to 
be offered early enough to have an effect but not so early as to deerease the morale of the person 
receiving it. This calls for the importance of providing innovative types of services tailored 
towards the speeific stage and needs of the care receiver and caregiver.
One source of formal education that can occur at the early stages of the disease is from the 
primary care physician (the doctor who gives the probable diagnosis) to the caregiver and care 
receiver. Due to confidentiality, other types of formal service providers are seldom in the 
position to seek out caregivers to provide education on available services. However, primary 
care physicians are in a unique role as they are given the opportunity to educate caregivers 
during the beginning stages of the disease and throughout. Primary care physicians are typically 
the first formal service provider that caregivers come into contact. Thus, they have been referred 
to as the initial source of entry into the greater realm of available formal services (Kaye, Turner, 
Butler, Downey, & Cotton, 2003). It is up to physicians, when meeting with family caregivers, 
to educate them on the importance and availability of outside services and to make appropriate 
and timely referrals. However, recent research indicates that physicians themselves are often not 
aware of services that exist in their communities (Lubben & Damron-Rodriguez, 2003). 
Cummings & Jeste (1999) finds that physicians generally do not emphasize formal service use as
34
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
part of treatment plans for those giving and receiving care. A study by Fortinsky (1998) 
eoncludes that physicians are most likely to refer dementia patients and their caregivers to long­
term care and home health care agencies instead of other formal agencies such as Alzheimer 
support groups and respite care. In this study by Fortinsky (1998), the importance of following 
up with caregivers after an initial consultation is noted. Upon hearing the news of an Alzheimer 
diagnosis, earegivers and care receivers may experience a mix of emotions which may 
essentially make it difficult to retain information. When caregivers are experiencing stress, 
limited amounts of information can be retained at any one time (Kaye et al, 2003). Thus, proper 
follow-up and integration with formal service providers who can assess and educate caregivers 
on a continual basis may be better received. Information needs to be provided in an appropriate 
and timely manner, not necessarily at the time of diagnosis. The absence of receiving accurate 
information in a well-timed manner has been cited as one of the main reasons that caregivers do 
not seek outside assistance (Schofield, 1998).
Guilt
Caregivers often feel compelled to provide full time care for their loved ones and experience 
guilt at the mere contemplation of seeking assistance elsewhere. This is particularly evident 
among spousal caregivers. When compared to adult children caregivers, spouses are less likely 
to aceess services when needed and experience a greater degree of guilt when contemplating the 
use of services (Cotrell, 1996). For most, the act of providing informal care automatically occurs 
when needed without conseious awareness of the significance of this role or the sacrifices it 
entails. Informal care is strongly embedded through an ideology of familial obligation shaped by 
societal expectations and the political agenda of saving health care dollars.
35
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Although the role of informal care is signifieant, caregivers often fail to see themselves as being 
notable in the speetrum of care and may undermine their significant contribution to society 
(Milligan, 2000). Since caregivers frequently act out of a sense of obligation, love, and duty; 
guilt and familial responsibility may prevent them from seeking formal serviees or feeling 
entitled to initiate the use of such services (Milligan, 2000). Thus, education which focuses on 
working through feelings of guilt, particularly with spousal caregivers, is imperative in order for 
respite to be utilized (Cotrell, 1996).
Finaneial and other struetural barriers
Since respite care is generally an out-of -pocket serviee, earegivers may choose not to utilize 
these services due to expense. It is well documented that caregivers have expressed their 
concern over the cost of respite care (MeCabe et al, 1995; Della-Buono et al, 1999; Liken & 
King, 1995; Mullan, 1993) and may hesitate to utilize such a service if they do not have 
sufficient resources to afford it (McCabe et al, 1995). In one partieular study, the most 
frequently eited reason for the discontinuation of respite care is the expense of the service 
(Cotrell, 1996). Government subsidized support may be available for some caregivers who 
qualify based on income cut-off eligibility criteria, yet such benefits are usually quite meager at 
best. Depending on other aspects of eligibility such as of the eare receiver’s age and limitations 
due to ehronic disabilities, a set number of government subsidized hours are usually available to 
meet basic survival needs through food delivery programs and in-home assistanee with activities 
of daily living. However, in certain Ontario jurisdietions, long waiting lists and reduced funding 
has ereated a problem in meeting the needs of those who are eligible for these services. Long
36
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
waiting lists have been associated with reduced satisfaction of services (Cryns et al, 1989; 
Townsend & Kosloski, 2002). Likewise, clients are more satisfied when services are readily 
available (Safran et al 1998). Services that are shadowed with structural barriers such as long 
waiting lists, confusing eligibility criteria and multiple steps that need to be taken before services 
are formally put into place creates a system of care that lacks user friendliness and inevitably 
creates a further deterrent to utilization. It has been noted that a flexible serviee that can be 
accessed quickly is essential partieularly for earegivers that are employed (Cotrell, 1996). 
Additionally, in light of the fact that respite services are not usually aecessed until an 
emergency/crisis situation occurs, having services available in a timely manner becomes 
increasingly important.
Assistance from familv and friends. Lack of outside assistance and support is one of the 
predominant factors in shaping a stressful experience (Baumgarten, Battista, Infante-Rivard, 
Hanley, Becker, & Gauthier, 1992; Gallagher-Thompson, Brooks, Bilwise, Leader, &
Yeasavage, 1992; Montgomery & Kosloski, 1994; O ’Donnell, Drachman, Barnes, Peterson, 
Swearer, & Lew, 1992; Pruchno, Michaels, & Potashnik, 1990; Teri, Rabins, Whitehouse, Berg, 
Reisberg, Sunderlans, Eichelman, & Phelps, 1992; Winogrond, Firk, Kirsling, & Keyes, 1987; 
Winslow, 1997). Likewise, social support has been shown to deerease adverse psychological 
symptoms such as stress. Specifically, lack of assistance from family and friends has been 
shown to eontribute to stress among caregivers (Clybum, 2000). Since care is generally 
provided by one person as opposed to a network of people, lack of understanding from other 
family members who pay sporadie visits commonly do not understand a caregivers experience 
let alone there feelings of accumulated stress (Cummings, 1996). Evidence in the literature notes
37
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
that having other individuals available to provide support helps caregivers to cope more 
effectively with stress (Hobfoll & London, 1986; Hobfoll & Walfisch, 1984; Collijn, Appels, & 
Nijhuis, 1995). In a study by Franks & Stephens (1996), sixty-four percent of the women in this 
study received assistance from their spouses whieh helped to protect them from the negative 
impacts of caregiver stress.
Difficultv Asking for Help. The difficulty that caregivers have in asking for help gives rise to 
the importance of educating caregivers (Petronela et al, 2001) about how to access outside 
sources of help and to deepen their awareness around their entitlement to such help. Whether it 
is seeking out formal services in the form of support groups or respite care, seeking out informal 
help through family and friends, or engaging in self-eare strategies (exercising, spending time 
with other family and friends, etc), caregivers need to understand that by not seeking help the 
adverse eonsequences of caregiving will take their toll. Thus, timely information and emotional 
support is essential to educate caregivers on the benefits of engaging in help through informal 
and formal services (Winslow, 2003). In a study by Juozapavicius & Weber (2001), which 
examines post Alzheimer caregivers, the most widely given piece of advice that caregivers wish 
to pass on to other earegivers was to seek help as soon as possible. Similarly, in a study by 
Bruce et al (2002) many of the caregivers wish that they had utilized formal support services 
earlier. Caregivers often do not reeognize themselves as a client and accordingly may not view 
themselves as someone who can use formal services to ease the stress that their role will likely 
bring. Receiving information at an appropriate paee will help earegivers and care receivers 
adjust to their role, become aware of what to expect and most importantly know that help is 
available and accessible.
38
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Due to the stigma that is attached to an Alzheimer disease diagnosis, caregivers may try to 
proteet themselves and the one they eare for by isolating themselves from others and potential 
sources of support (Bedard et al, 1997). Caregivers may also avoid service use due to their own 
preferences or the preferences of the person for which they care. Caregivers often worry about 
the quality of care that their loved one will receive (Winslow, 2003; Della-Buono et al, 1999); 
while eare receivers themselves may resist the use of such services.
A study by Rapp et el (1998), which looks at social resourcefulness (ability to seek out and 
maintain supportive relationships) and its effect on the dementia caregiving experience), found 
that help seeking is strongly associated with actual receipt of support (Dunkel-Schetter et al, 
1987; Hobfoll & Lerman, 1988). Significant relationships were found between social support 
and depression, quality of life, perceived health status and perceived benefits from caregiving 
(Rapp et al, 1998). However, when compared to noncaregivers, caregivers are less likely to seek 
out or enjoy the benefits of social support (Kiecolt-Glaser et al, 1991). Thus, lack of support 
often leads to adverse caregiving outeomes sueh as depression and stress.
Self-Care. Self-eare praetices were not strongly promoted until the 1980's when individuals 
were eneouraged to take responsibility for their own health through proper nutrition, exercise and 
social involvement. During this time, the attempt at dismantling the harsh stereotypes against 
elderly people began to take place, whieh was promoted through healthy aging campaigns and 
the creation of community wellness centers for senior eitizens. Providing this altruistie, yet 
demanding role of informal caregiving, often leads to compromised physical and mental health
39
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
among caregivers. It frequently causes caregivers to neglect their own health as they try to fulfill 
the needs of the person requiring care.
Self-care is identified as effective in containing health eare eosts and decreasing psychological 
and physical deterioration (Morrongiello & Gottlieb, 2000). In fact, physical health problems 
such as sleep disorders, anxiety, chronic fatigue, hypertension and cardiovascular disease result 
from caregiving (Burns et al, 1996) as this role frequently prevents caregivers from meeting their 
own health needs through, proper rest, exercise and a well-balanced diet (Petronela- 
Juozapavicius & Weber, 2001).
Self-care practices and views among caregivers are not heavily documented in the caregiving 
literature; however it is a topic of interest that seems to be developing as shown in recently 
published studies. Acton (2002) through her study that compares self-care practices among 
caregivers and non-caregivers defines self-care as "those actions persons take to improve health, 
maintain optimal functioning, and increase general well-being." Examples of self-eare activities 
are exercising regularly, getting enough rest, eating nutritiously, and any other activities that lead 
to a healthy mind, body and spirit (e.g., reading, traveling, meditating, etc). In this study by 
Acton (2002), family caregivers scored significantly lower on views of the importance of self- 
care, self-care behaviors, interpersonal relationships, stress management, total health promotion 
actions, physical activity, spiritual growth, hours of sleep, self efficacy for self-care, and health 
responsibility when compared to matched non-caregiver eontrols (Acton, 2002). Alzheimer care 
recipients need assistance with aetivities of daily living (eating, bathing, dressing, etc.,) which 
has been correlated to compromised physical exercise and lack of rest (Burton, et al, 1997)
40
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
which essentially leads to heightened strain, burden (Shaw et al, 1997; Sisk, 2000) and health 
negleet (Wright, 1997). Additionally, caregivers who are looking after a care recipient who 
exhibits behavioral disturbances experience increased amounts of stress and are less likely to 
look after their health needs (Shaw et al, 1997). When levels of stress become intensified, 
psychological disturbances sueh as feelings of hopelessness, a decrease in general well-being and 
suppression of the immune system can occur (Wilcox, 1999; Wykle, 1994). Alzheimer 
caregivers tend to experienee social isolation, which is also correlated with a decrease in self- 
care practices (Kaplan, et al, 1987).
As a result, research points to the conelusion that partaking in self-care strategies can potentially 
lead to increased quality of life and less aversive psychologieal symptoms in caregivers. From a 
policy perspective, promoting self-care strategies appears to help to inerease caregiver longevity 
which will lead to decreases in institutionalization and a healthier population of informal 
caregivers. As noted expressed by Lefley (1987), “Caregiving for one group at the expense of 
another can scarcely be considered a desirable mental health objective.” Initiatives on this policy 
issue need further research.
Dependent Variable. 
Perceived Stress.
This section examines the dependent variable perceived stress. Although informal caregiving 
can be eharacterized by love and loyalty resulting from a combination of familial obligation and 
altruistic drive to provide for the person in need, the adverse consequences of providing this type
41
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
of care is generally experienced and is heavily documented in the literature. The high levels of 
stress experienced by Alzheimer caregivers is emphasized in several studies (Vitaliano, Russo, 
Young, Becker, & Maiuro, 1991; Schulz, Visitainer, & Williamson, 1990; Wright, Clipp, & 
George, 1993; Gilhooly, 1994; Motenko, 1989; Novak & Guest, 1989; Gubrium & Lynott, 1987; 
Bonnel, 1996; George & Gwyther, 1986; Skaff & Pearlin, 1992; Zarit, Todd, & Zarit, 1986; 
Knight, Lutzky, & Macofsky-Urban, 1993; Lawton, Moss, Kleban, Glieksman, & Rovine, 1991; 
Zarit, Gaugler, & Jarrott, 1999). Several factors are associated with the degree of stress a 
caregiver will experience. Caregiving characteristics (gender, age, marital status, employment 
status and relationship to the care receiver), care receiver characteristics (stage of disease and 
living arrangements) and outside interventions (use of respite care, help from family and friends, 
and engagement in self-care practices) are some of the factors that will likely influence the 
degree of stress experienced by earegivers. Due to the care receivers gradual loss of memory, 
deterioration of communication skills (e.g., repetitive questioning, loss of meaningful 
conversation, etc), and an increase in behavioral disturbanees (e.g., wandering, agitation, etc), 
caregiver stress becomes exacerbated in comparison to caring for someone who is cognitively 
intact but has physical ailments (Chappell, Reid, & Dow, 2001). The inability of care receivers 
to reciprocate and/or verbalize appreciation to their caregiver adds to the complexity of this role.
Figure 2.2 adapts Cohen, Kessler & Gordon’s (1995) heuristic model of stress to outline the 
process of stress from a biological, environmental and psyehological perspective and how it 
impacts on the person experiencing it. From their perspective, stress begins with an 
environmental demand that is identified as a stressor or life event. Caring for a family member 
or friend with Alzheimer disease tends to be a taxing experienee, falling under this category of a
42
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
"stressor." For example, when the caregiver feels that they are struggling to meet the needs of 
the person that they are caring for, a negative appraisal of their coping strategies occurs. This 
ultimately leads to the caregivers "perceived stress." As noted by Reinhard, Rosswurm, & 
Robinson (2000), when the role of care is accompanied by a lack of sufficient resources, the 
result is stress. The appraisal of stress may be accompanied by feelings of depression, social 
isolation, decreased well-being, feelings of helplessness and so forth. These symptoms often 
lead to compromised and deteriorated objective and subjective measures of health. This model is 
not unilateral and may change as a result of intervention and outside social support, which may 
enable caregivers to increase adaptive capacities and effectively deal with negative emotional 
responses.
Figure 2.1: Heuristic Model of Stress
Environmental Demands 
(Stressors or Life Events)
Appraisal of Demands and of Adaptive Capacities
Perceived Stress
Negative Emotional Responses]
Physiological and Behavioral R e s p o n d
Increased Risk of Physical and/or Psychiatric Disease)
As indicated by the heuristic model of stress, the symptom of stress essentially has an impact on 
one’s physical and mental health and well-being. Due to these unfavorable stress outcomes, it 
becomes increasingly important to understand the needs of populations who experience stress
43
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
due to role demands. Alzheimer caregivers play a vital role in the provision of homecare yet 
suffer the many adversities of fulfilling this role. Thus understanding the various factors which 
influence their experience is essential to meeting the needs of this population who are of such 
value to the Canadian health care system.
44
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Chapter 3 
Methodology
Introduction.
The primary goal of this quantitative study is to assess levels of perceived stress among support 
group members by accounting for factors which potentially influence a caregiver’s level of 
stress. The association is examined between perceived levels of stress and support group 
characteristics (length of support group attendance), care receiver characteristics (stage of the 
disease, living arrangements), caregiver characteristics (gender, age, marital status, employment 
status, relationship to the care recipient), use of outside help (utilization of respite care, barriers 
to respite care, levels of self-care, assistance from family and friends, and perceived difficulty in 
asking for help) and the connection to perceived levels of stress is examined.
Sample.
The population for this sample is Alzheimer caregivers who attend support groups. As this 
population cannot be readily identified, this study chooses to use caregivers who belong to 
support groups of the Alzheimer Society as a sampling frame. This sampling frame is further 
narrowed to the six Alzheimer Society sites in Northern Ontario (Thunder Bay, Kenora,
Sudbury, Timmins, North Bay and Sault Ste. Marie). From this Northern Ontario sampling 
frame, the sample is comprised of all Alzheimer caregivers who were currently attending support 
groups during the time frame of June to October of 2003. This sample, as indicated by the staff 
of these sites, is 143 caregivers.
45
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
A non-random sample was used as all support group attendees who attended the support groups 
offered by the Alzheimer Society in Northern Ontario during the time frame of June-October of 
2003 were given the option of filling out the survey. The staff at these six sites requested, in 
total, one hundred and forty-three surveys. From these requested surveys, ninety-six surveys 
were actually distributed to Alzheimer support group members. Thirty-four caregivers 
completed and mailed the surveys back. One survey was excluded as the caregiver did not 
match the required eligibility criteria to fill out the survey.
Procedure.
Ethics Review
Once the thesis committee approved the proposal for the study, an application was prepared 
for ethics review by the Lakehead University Research Ethics Board. This approval was 
received on February 5, 2003. A copy is included in Appendix A. The cover letter outlining 
the purpose of the survey as well as the inherent risk factors and confidentiality principles 
can be found in Appendix B. The following two instruments were also given to the Ethics 
Committee:
• A self-designed twenty-six item survey comprised of closed ended questions on caregiver 
and care receiver demographics, outside assistance through respite services, assistance 
from family and friends, self-care practices and open ended questions on factors leading 
to stress, and service suggestions for the future (Appendix C).
46
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
• The four-item version of Cohen’s Perceived Stress Scale (Cohen, Kamarck, & 
Mermelstein, 1983) which consists of questions that pertain to one’s view of how 
stressful they perceive their life to be over the span of the last month. (Appendix D).
Pre-testing the Survey Instrument
This original twenty-six item survey was reviewed and modified many times by myself and my 
supervisor. Included in this twenty-six item survey is the four-item version of Cohen’s 
Perceived Stress Scale. A penultimate draft was sent to each of the six Northern Ontario 
Alzheimer Society sites where some combination of the Executive Director, Family Support 
Coordinator and/or Support Group Leader(s) agreed to critique the self-designed survey. In 
addition, each site agreed to recruit one caregiver to actually fill out the survey and provide 
commentary on the readability and relevance of the questions for caregivers who attend support 
groups. The feedback received was extremely valuable in making last minute adjustments to the 
survey.
Focus Group
Besides getting the feedback from the staff and caregivers, the survey was also improved by 
meeting face to face with caregiver support group members at one of the Northern Ontario sites.
In summary, from the feedback from these three sources- Alzheimer Society staff, Alzheimer 
caregivers who attend support groups and a face to face meeting with four caregivers at one of 
these sites- the survey was finalized.
47
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Self-administered mail-out survey
As mentioned earlier, the staff at these Alzheimer Society sites indicated a potential sample size 
of 143. The following chart summarizes the mail-out and distribution numbers and response rates 
by all six Alzheimer Society sites. Of the 143 requested surveys, ninety-six were actually 
distributed to caregivers who currently attend these support groups. As indicated in Table 3.1 
the overall response rate was thirty-five percent.
Table 3.1: Sample Response Rates
Location Number of Number of surveys Number of Response 
surveys requested administered surveys returned Rate (%)
Thunder Bay 39 10 6 60.0%
Kenora 4 4 3 75.0%
Sudbury 56 43 14 325%
North Bay 4 4 1 25.0%
Sault Ste. Marie 15 15 7 46.6%
Timmins 25 20 3 15.0%
Total 143 96 34 35.4%
Originally each site was provided with a prepaid envelope for returning the surveys. However, 
at the request of the Sudbury and North Bay sites, individualized envelopes with prepaid postage 
were mailed with the surveys to meet the convenience needs of the support group members.
This may largely account for the increased response that was received from Sudbury relative to 
the other sites. Furthermore, in the original design, the staff at the six sites indicated that the
48
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
caregivers would fill out these surveys at the support group meeting. Nonetheless, at the request 
and discretion of the caregivers at these meetings, support group leaders allowed caregivers to 
bring the surveys home to fill out. The researcher had no control over this change in plans. 
These details are noted to be instructive for future research; and may account for the overall 
response rate of 35.4 percent.
Research Design.
This study is carried out from a quantitative approach using a self-administered original 
questionnaire. The advantage of this survey methodology is that a larger sample can be reached 
at a relatively low cost. This survey includes twenty-six open and closed questions. Factors 
such as demographics, length of support group attendance, use of outside assistance through 
respite care, assistance from family and friends, frequency of self-care practices and perceived 
difficulty in asking for help when stressed were used to examine variables which influence the 
experience of Alzheimer support group members.
This survey incorporates Cohen’s four-item Perceived Stress Scale as well as a question asking 
caregivers to identify their level of self-identified stress. In order to incorporate all five of these 
questions into one stress score, each question was weighted according to the findings of the 
literature. Particular references to the literature for each of these weighted questions are noted 
below. Due to the inconsistencies in the way the questions are worded in Cohen’s Perceived 
Stress Scale, the response categories were scrutinized to account for any inconsistencies due to 
the nature of the way the questions were worded. After the responses of the stress questions 
were weighted, a total score out of ten was tallied for each caregiver, with ten being the
49
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
maximum possible perceived stress score. In addition, the answer categories for each of these 
five questions were also weighted. This weighting was done on the basis of looking at the 
caregiver responses to each of these questions and weighting so as to compensate for 
misunderstandings in answering the questions. To further corroborate these weightings on the 
response categories, a random selection check for stress scores was done as illustrated in table 
3.2. As noted by Cohen, Kamarck & Mermelstein (1983), the stress measured from these 
questions may result from a range of aspects other than caregiving. This does not affect the 
outcome as all caregivers are diverse and carry with them trials and tribulations stemming from 
other aspects of their lives. In support of a Contextual Fluidity approach, the fact that other 
aspects besides caregiving may be leading to the caregivers perceived stress does not make the 
findings of this study questionable. Rather, it supports the realization that a combination of 
factors lead to perceived stress among caregivers which may or may not specifically be related to 
caregiving duties.
Question 1:
In the last month, how often have you fe lt that you were unable to control the important things in 
your life?
Weighted Value of Question Weighted Value of Answer Categories
20.0% Never = 0
Almost Never = 1
Sometimes = 4
Fairly Often = 7
Very Often = 1 0
50
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Question 1 was weighted at 20 percent because it portrays a strong sense of hopelessness which 
is significantly linked to chronic stress (Wilcox & King, 1999; Wykle, 1994).
Question 2:
In the last month, how often have you fe lt confident about your ability to handle your personal 
problems?
Weighted Value of Question Weighted Value of Answer Categories
Weighted Value 15.0% Never = 10
Almost Never = 8
Sometimes = 5
Fairly Often = 2
Very Often = 1
Question 2 was weighted at 15 percent because it is not as definitive as the first perceived stress 
question. Feeling unable to control something as opposed to feeling confident about doing 
something will likely measure stress to a lesser degree. Also, after thoroughly examining all of 
the perceived responses from the thirty-three surveys, some of the answers to this question did 
not quite fit with the other responses possibly due to a change in wording. For example, the first 
question uses the word unable while this question uses a different approach by asking if the 
caregiver is confident about their ability to handle personal problems. The caregiver respondents 
may have misread this as not being confident.
51
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Question 3:
In the last month, how often have you fe lt that things were going your way?
Weighted Value Weighted Value of Answer Categories
10.0% Never = 10
Almost Never = 8
Sometimes = 4
Fairly Often = 2
Very Often = 1
Question 3 was weighted at 10 percent because it is not as significant as the other questions in 
terms of measuring stress. Life is full of trials and tribulations and although some people will 
say things have not been going their way it does not necessarily mean they are stressed. Also, 
after thoroughly reading the responses to the perceived stress answers from all thirty-three 
surveys, some of the answers to this question did not fit with the other responses justifying the 
weight of ten percent relative to the other questions.
52
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Question 4;
In the last month, how often have you fe lt difficulties were piling so high that you could not 
overcome them?
Weighted Value of Question Weighted Value of Answer Categories
15.0% Never = 1
Almost Never = 4
Sometimes = 7
Fairly Often = 9
Very Often = 10
Question 4 was weighted at 15 percent as it also portrays a sense of hopelessness which is linked 
to chronic stress (Wilcox & King, 1999; Wykle, 1994).
Question 5
Rate your overall experience as a caregiver so far:
Answer Categories Weighted Value of Question
Very Stressful = 10 40.0%
Stressful = 8 
Unstressful = 3 
Very Unstressful = 1
53
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
This question was weighted at 40 percent because it specifically asks the Alzheimer caregiver to 
rate their perceived level of stress. Although the Perceived Stress Scale is described as the most 
widely used tool to measure the perception of stress (Cohen, 1994), no identified caregiving 
studies used this particular stress scale. Additionally, in light of the possibility that measuring a 
response to a specific stressor is difficult (Gochman, 1979; Keating, 1979; Worchel, 1978; 
Worchel & Teddlie, 1976), this question asks in a straightforward manner how the caregiver 
rates their experience as a caregiver, to ensure that the perceived stress in relation to the 
caregiving experience is indeed measured.
54
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Table 3.2: Random Selection Check for Stress Scores
Using the random selection process from SPSS version 11.5, five out of the total thirty-three 
cases were selected to test the consistency and validity of the questions measuring perceived 
stress.
Case “In the last “In the last “In the last “In the Self- Total
month, month, month, last Identified Stress
how often how often how often month, Stress Score
have you have you have you how often 
felt that felt felt that have you 
you were confident things felt
unable to about your were difficulties 
control the ability to going your were 
important handle way?” piling so 
things in your high that 
your life?” personal you could 
problems?” not
overcome
them?”
#2 Sometimes Fairly Sometimes Fairly Stressful 6.05
Often Often
#5 Never Very Often Very Never Very 0.80
Often Unstressful
#20 Very Almost Never Very Very 9.7
Often Never Often Stressful
#26 Very Very Often Sometimes Very Very 8.05
Often Often Stressful
#30 Sometimes Fairly Fairly Fairly Unstressful 285
Often Often Often
SPSS randomly selected five cases from all thirty-three possible cases. The table indicates that 
each stress score coincides with each caregivers self-identified level of stress. For example, 
caregiver #20 scored 9.7 out of 10.0 for perceived stress and rated their caregiving experience to 
be ‘very stressful’ while caregiver #5 scored 0.80 out of 10.0 and rated their caregiving 
experience as ‘very unstressful.’ Some of the perceived stress questions (the first four questions)
55
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
did not mesh well with other answers. For example, caregiver #26 stated that they felt unable to 
control the important things in their life ‘very often’ and also felt confident about their ability to 
handle their personal problems ‘very often’. The answer for question #2 does not coincide with 
other answers, however, due to the weighting system, this answer did not appear to skew the 
overall perceived stress score. The same was evident for caregiver #30, as the answer to 
question #4 did not coincide with the other answers. However, similarly to caregiver #5 this did 
not appear to skew the overall perceived stress score.
Variables.
Dependent variable: perceived stress
Independent variables: support group characteristics (length of support group), victim 
characteristics (stage of disease, living arrangements), caregiver characteristics (gender, age, 
marital status, employment status, relationship to the care recipient), outside assistance (help 
from family and friends, self-care practices, use of respite care, barriers to respite care, perceived 
difficulty in asking for help when stressed).
56
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Hypotheses.
All twelve hypotheses were divided into four independent variable groups (support group 
characteristics, care receiver characteristics, caregiver characteristics, and outside interventions).
• Support group characteristics
—^•Caregivers who have been attending the Alzheimer support group for two
years or more experience lower perceived stress than caregivers who have been 
attending the Alzheimer support group for less than two years.
• Care receiver characteristics
—>Caregiver support group members who are in the middle to late stages of Alzheimer
disease experience higher perceived stress than caregiver support group members of care 
receiver’s in the early stage of Alzheimer disease.
—^•Caregiver support group members who live with the care receiver experience higher
perceived stress than caregiver support group members who do not live with the care 
receiver.
• Caregiver characteristics
—>^Spousal caregiver support group members experience higher perceived stress when 
compared to adult children caregiver support group members.
57
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
—^Female caregiver support group members experience higher perceived stress when 
compared to male caregiver support group members.
—►Caregiver support group members who are employed experience lower perceived 
stress compared to caregiver support group members who are not employed.
—►The older the caregiver support group member the greater level of perceived stress 
reported.
Outside Interventions
—►Caregiver support group members who utilize respite care (day programs, institutional
respite care, in-home respite/homecare) experience lower perceived stress than caregiver 
support group member who do not utilize respite care.
—►Caregiver support group members who experience barriers to respite utilization
experience higher perceived stress when compared to caregiver support group members 
who do experience barriers to respite utilization.
—►Caregiver support group members who have increased or maintained practices of self-
care experience lower perceived stress compared to caregiver support group members 
who have decreased the frequency of practices of self-care.
58
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
—►Caregiver support group members who receive help from another family member
(two or more times a week) experience lower perceived stress compared to caregiver 
support group members who do not receive help from another family member (two or 
more times a week).
—►Caregiver support group members who have difficulty asking for help in a situation
where they feel stressed experience higher perceived stress compared to caregiver 
support group members who do not have difficulty asking for help in a situation where 
they feel stressed.
Definitions.
• Dependent Variables 
Caregiver Stress: the ten signs of caregiver stress as documented by the Alzheimer Awareness 
Campaign (1999).
—̂ denial that the person has the disease
anger at the person with the disease and others 
—>emotional sensititivity 
—̂ social withdrawal 
^depression 
—>lack of sleep 
—»lack of concentration
59
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
—̂ exhaustion
-i-anxiety
—>an increase in health problems
Stress is one of the most commonly used psychological measures in caregiving studies and can 
be defined in objective or subjective terms. A subjective definition of stress can be defined as an 
individual’s appraisal o f the demands in his or her environment, while an objective definition 
takes on a more environmental perspective with the assumption that stress can be measured 
depending on the specific life event being experienced. The weakness of this latter definition is 
that it does not account for the unique personal attributes of individuals which inherently 
influence their stressful experience. For example, it is assumed that individuals who identify 
themselves as a primary Alzheimer disease caregiver will experience stress. However, many 
factors influence the degree of stress they will experience such as their relationship with the care 
recipient, level of outside support, employment status, gender, and age.
To further understand the subjectivity of caregiver stress, caregivers are asked to document 
through open-ended questions on the survey what contributes to their stress. Through closed 
ended questions, caregivers are asked to rate their perceived level of stress on a four-item Likert 
Scale ranging from Very Unstressful to Very Stressful. Both items are combined as a dependent 
variable of perceived stress.
60
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
• Independent Variables
Length of Support Group Attendance: how long that the caregiver has been attending the 
Alzheimer support group. This was divided into two groups: less than two years and two years 
or more.
Gender: the sex of the caregiver.
Age Group: the age of the caregiver. This was divided into two groups: sixty years and under 
and over sixty years of age.
Marital Status: whether the caregiver is married, single, divorced, widowed or other.
Employment Status: whether the caregiver is working full time or part time, is retired, not 
employed at this time, or other.
Caregiver Type: whether or not the caregiver is a spouse or an adult child to the person in need.
Living Arrangements: whether or not the care receiver lives with the caregiver.
Stage of disease: early or middle or late stage of Alzheimer disease. This was divided into three 
categories, early, middle/late and deceased. See Table 3.3 for a breakdown summary of the
61
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
different signs of each stage of Alzheimer disease which is based on the findings of the 
Alzheimer Society of Canada (2003b).
Table 3.3: Stages of Alzheimer Disease
Stage Signs
Early -^M ild forgetfulness 
—>Poor concentration 
—»^Memory problems 
—>In conversation, person has difficulty 
finding the right words and may be 
repetitive 
—>^Difficulty learning new things 
—>Withdrawal from usual activities 
—>Mild coordination problems 
—»-Mood changes (e.g., depression)
Middle ^Inability to recognize family and friends 
^Disorientation of time and place 
>Assistance needed with activities of daily 
living (bathing, dressing, using the 
washroom)
62
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
^Restlessness (pacing, wandering) 
^Changes in appetite and sleep patterns 
♦Continued mood changes (anxiety, 
depression, anger, suspiciousness, etc).
Late ♦Loss of ability to communicate, remember, 
or function
♦Severe speaking difficulties (may 
completely lose ability to speak)
♦Unable to dress, bathe, etc.
♦May become bedridden 
♦Severely disoriented
Respite care: a specialized program designed to allow caregivers to have a break while care 
recipients receive supervised care. Respite is generally available in the following three forms: 
adult day programs, in-home respite, and institutional respite care.
•  An adult day program is a service that is provided outside of the home in a designated 
facility in which a combination of basic care, meals and activities are provided during the 
day.
63
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
• In home respite is a service in which health care workers, support workers or respite 
volunteers provide aid in the nature of nursing and personal care, housecleaning and/or 
visiting/supervision in the caregiver or care receivers home to meet the psychosocial and 
health related needs of care receivers. This is the most costly form of respite yet most 
preferred among those both providing and receiving care.
• Institutional respite care has been documented as the least preferred yet most ideal for 
caregivers who need a fixed and extended break for purposes of traveling, working, or 
catering to their own mental and physical health (e.g., hospital admission, surgery, etc). 
Institutional respite is temporary “round the clock” comprehensive care that is provided 
for a fixed period of time (e.g., a few days to a few months) in a designated facility 
(usually in long-term care facilities which hold designated respite beds).
Barriers to respite care: financial limitations, limited or no information about respite services, 
no interest in using respite services, lack of transportation to respite service, and respite services 
not available in home community.
Self-care practices: reading, napping, exercising, watching television, visiting friends and 
spending time with other family members. Frequency comparisons are made as caregivers are 
asked to document the difference in frequency of these activities before becoming a caregiver 
and at present (since they have become a caregiver).
64
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Help from family and friends: receiving assistance with caregiving tasks from family and/or 
friends two or more times a week.
Perceived difficulty in asking for help when stressed- the self-identified level of difficulty that 
caregivers have when needing to seek help when feeling stressed.
Delimitations.
This study on Alzheimer caregivers who attend support group offered by the Alzheimer Society 
was delimited to active Alzheimer support group members between the months of May and 
October of 2003 who reside in Northern Ontario.
Limitations.
• Due to the sample size and response rate, all results (although some are significant) need 
to be interpreted with caution.
•  Due to the sample size each independent variable was testing individually with the 
dependent variable. No other variables were controlled for while testing each 
independent variable. Each of the independent variables (as analyzed separately in 
relation to the dependent variable) cannot alone account for differences in levels of 
perceived stress among caregivers as substantiated by a contextual fluidity framework. 
Examining a combination of various variables is necessary to understand the various 
contributing factors to perceived stress among Alzheimer caregivers. As a result, using
65
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
this research with a larger sample is necessary before any definitive conclusions can be 
drawn.
• When distributing the surveys, originally one extra envelope with prepaid postage was 
included with the mailed surveys, so the surveys could be returned in one envelope after 
completion. At the request of caregivers from two of the Northern Ontario sites, separate 
self-addressed envelopes along with each survey were sent to these sites to meet the 
convenience needs of the caregivers. As a result, this may have reflected the higher 
response rates from these sites relative to the other sites.
66
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Chapter 4 
Results
Overview.
The data for this survey study was analyzed using SPSS version 11.5. The total sample size was 
thirty-three; however, some questions were not answered by all participants. When a participant 
did not respond to a question, any changes in the sample size are in the corresponding tables 
which note the ‘n’ value referring to the number of caregivers who answered the question.
As previously mentioned, the twenty-six item self-designed survey examines levels of perceived 
stress among Alzheimer caregiver support group members. The independent variables support 
group characteristics (length of support group), caregiver characteristics (gender, age, marital 
status, employment status, relationship to the care recipient) and care receiver characteristics 
(stage of disease, living arrangements) and level of outside help (use of respite care, barriers to 
respite utilization, help from family and/or friends, self-care, and perceived difficulty in asking 
for help when feeling stressed) are incorporated into the study as factors that potentially 
influence the level of perceived stress among Alzheimer support group members.
Support Group Characteristics
Length of support group was divided into two groups (less than two years and two years or 
more). From these two categories 54.8 percent of the caregivers had been attending the 
Alzheimer support group for two years or more while 45.2 percent had been attending for less 
than two years.
67
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Caregiver Characteristics
This sample of thirty-three caregiver support group members consisted of 64 percent females and 
36 percent males. The average age of these caregivers was sixty-four for both sexes with 70 
percent of the caregivers over the age of sixty, and 30 percent sixty years of age and under. Most 
caregivers identified themselves as adult child caregivers (58.1 percent) which was closely 
followed by caregivers who were looking after a spouse (41.9 percent). The majority of the 
caregivers were married (78.8 percent), while a small portion were widowed (12.1%), divorced 
(6.1%) or single (3.0%). An overwhelming majority of the caregivers were retired (66.7 
percent), while a smaller portion were employed full time (15.2 percent), part time (6.1 percent), 
not employed (6.1 percent) or other (6.1 percent). When grouped together, employed caregivers 
constituted 27.3 percent of the sample while non-employed caregivers constituted 72.7 percent of 
the sample.
For a complete list of caregiver characteristics see Appendix E.
Care Receiver Characteristics
All care receivers were identified as having Alzheimer Disease with the exception of one care 
receiver who suffered from a related dementia (organic brain disorder). An accumulated 37.5 
percent of care receivers lived with the caregiver while 62.5 percent did not live with the care 
receiver. The open-ended responses indicated some of the specific living arrangements of care 
receivers. When broken down into sub-categories, care receivers who lived with their caregivers 
constituted 33.3 percent of the sample while 33.3 percent lived in long-term care. A smaller 
portion of the care receivers had other living arrangements with 6.1 percent of the care receivers
68
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
living in the community but separate from the caregiver, while the residence of 15.2 percent of 
the care receivers remained unknown. The majority of care receivers were in the middle and late 
stages of Alzheimer disease and related dementias (62.5 percent) with 25 percent in the early 
stage. Deceased care receivers made up 13 percent of the sample.
Use of Outside Support
In terms of outside support 51.6 percent of the sample indicated that they use or have used 
respite care, while 48.4 percent stated that they have never used respite. Current and former 
users of respite care were grouped together due to the small sample size. However only 9.7 
percent of the caregivers were currently using respite care. The majority of caregivers did not 
identify any barriers to respite utilization (78.1 percent) while fewer caregivers identified barriers 
to respite care (21.9 percent). The majority of caregivers (71 percent) did not receive help from 
family and friends two or more times a week while a smaller percentage (29 percent) of the 
caregivers did receive help from family and friends two or more times a week. When asked to 
rate the question “I have difficulty asking for help in a situation where I feel stressed”, the 
majority of the caregivers answered in the affirmative, with 23.3 percent indicating that they 
‘strongly agree’, and 46.7 percent indicating that they ‘agree’. A smaller percentage of 
caregivers did not agree with this statement with 16.7 percent stating that they ‘disagree’ and 
13.3 percent stating that they ‘strongly disagree’. When measuring the frequency of self-care 
before becoming a caregiver and since becoming a caregiver an even split in frequency was 
evident. Half of the sample (50 percent) maintained or increased self-care behaviors since 
becoming a caregiver while 50 percent decreased the frequency of self-care behavior.
69
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
In Figure 4.1 the findings from the dependent variable are discussed.
Figure 4.1 displays a cross tabulation bar chart of the dependent variable (perceived stress 
scores) among thirty-two Alzheimer caregiver support group members. One support group 
member did not answer the perceived stress questions on the survey. Results were continuous 
from 1 through 10 with 1 equaling caregiving as a very unstressful experience and 10 as a very 
stressful experience. Thus the higher the score, the higher the perceived stress of the Alzheimer 
caregiver support group member.
Figure 4.1: Perceived Stress among Alzheimer Caregivers
IS td . D ev = 2 .1 5  
I M ean = 5.9 
32.00
1.0 2.0 3.0 4 .0  5 .0  6 .0  7.0 8.0 9.0 10.0
Stress Score
The mean stress score was 5.9, with the standard deviation of 2.15. Because the distribution is 
almost normal, the 68-95-99.7 rule tells us that there are about 68 percent of scores one standard 
deviation from the mean or between 3.75 and 8.05. Thus, the majority of caregivers have some 
degree of perceived stress in relation to their caregiving experience.
Table 4.1 summarizes a list of the level of significance for each of the independent variables 
which were analyzed using independent samples t-tests and One-Way ANNOVAS. Due to the 
sample size, significant correlations were flagged at the 10 percent, 5 percent and 1 percent 
levels.
70
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Table 4.1: Summary of Significance among the Independent Variables
Independent Variable Significance Test Used
Length of support group 0.816 Independent Samples T-Test
attendance
Caregiver Gender 0.021** Independent Samples T-Test
Age Category 0.087* Independent Samples T-Test
Marital Status 0.085* One-Way ANOVA
Employment Status 0.59 Independent Samples T-Test
Type of Caregiver (adult child 0.840 Independent Samples T-Test
or spouse)
Living Arrangements 0.777 Independent Samples T-Test
Stage of Disease 0.506 One-Way ANOVA
Use or Have Used Respite 0.156 Independent Samples T-Test
Care
Have Experienced Barriers to 0.428 Independent Samples T-Test
Respite Utilization
Perceived Difficulty in Asking 0.069* Kendall’s Tau B Correlation
for Help
Regular Help from Family and 0.160 Independent Samples T-Test
Friends
Self-Care Frequency 0.004*** Independent Samples T-Test
71
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
* = significant at the 10 percent level
** = significant at the 5 percent level 
*** = significant at the 1 percent level
In summary significance at the 10 percent level was found for the independent variables age 
category, marital status, and perceived difficulty in asking for help when stressed. Significance 
at the 5 percent level was found for caregiver gender while significance at the 1 percent level 
was found for self-care frequency.
Number of Years of Support Group Attendance
Figure 4.2 displays a visual representation of length of support group attendance among the 
caregivers in this sample.
Figure 4.2: Number of Years of Support Group Attendance
Less than 2 years 2 years or more
The number of years of support group attendence
72
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
The majority of the caregivers in this study have been attending the support group for two years 
or more (54.8%) while a slightly smaller percentage of caregivers (45.2%) have been attending 
the support group for less than two years.
An independent samples t-test was performed to test the significance of the mean perceived 
stress score and length of support group attendance. Table 4.2 displays the results of this test.
Table 4.2: Independent Samples T-Test for Perceived Stress Score and Length of Support 
Group Attendance
Group Statistics
Ttte number of years of 
support group 
attendance N Mean
Stress Score Less than 2 years 14 5.8179
2 years or more 17 5.6412
There was very little difference between the mean stress score of caregivers who had been 
attending a support group for less than two years with caregivers who had been attending a 
support group for two years or more. The mean stress score was slightly higher for caregivers 
who had been attending a support group for less than two years (5.81 out of 10.0). The mean 
stress score for caregivers who had been attending a support group for two years or more was 
slightly lower at 5.64 out of 10.0.
73
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Independent Samples Test
Levene's Test 
for Equality of 
Variances t-test for Equality o f Means
F Sig. T Df Sig. (2-tailed)
Stress Score Equal variances 
assumed .071 .792 .235 29 .816
Equal variances 
not assumed 26.545 .818
The difference between varianees was not significant; therefore, the t-test for independent 
samples of equal variances was used. No statistieal significance was found between mean stress 
score and length of support group attendance.
Gender of the Caregivers
Figure 4.3 displays a visual representation of the gender differences in this sample of caregivers.
Figure 4.3: Gender of the Caregivers
5
2
a.
Male Female
The gender of the caregiver
74
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
The majority of caregiver support group members were female (64 percent) while male caregiver 
support group members constituted 36 percent of the sample.
An independent samples t-test was performed to test the significance of the mean stress scores 
between genders. Table 4.3 displays the results from this test.
Table 4.3: Independent Samples T-Test for Perceived Stress Score and Gender
Group Statistics
The gender of
the caregiver N Mean
Stress Score Male 11 4.6636
Female 21 6.4786
When compared to male caregivers, female caregivers were more likely to display higher scores 
of perceived stress. The mean stress score out of 10.0 for males was 4.66 while the mean stress 
score for women was significantly higher at 6.47.
Independent Samples Test
Levene’s Test 
for Equality of 
Variances t-test for Equality o f Means
Sig. (2-
F Sig. t Df tailed)
Stress Score Equal variances 
assumed .262 .613 2.440 30 .021
Equal variances 
not assumed 2.288 17.176 .035
The difference between variances was not significant; therefore, the t-test for independent 
samples of equal variances was used. The difference between means was significant at the 0.05 
level.
75
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Figure 4.4 displays a visual representation of perceived stress scores among both genders
Figure 4.4: Perceived Stress Scores According to Gender
Male Female
3
Ü
]
4.00 6.00 2.00 4.00 6.00 8.00
Stress Score Stress Score
These graphs visually display the higher degrees of stress that female caregivers experience 
relative to male caregivers. While male caregivers displayed a wide range of perceived stress 
scores, females consistently displayed higher perceived stress levels.
Age Category of the Caregivers
Figure 4.5 displays a visual representation of the differences between two age groups in this 
sample.
76
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Figure 4.5: Age Category of Caregivers
60 and under Over 60
Age Category
The ages of the caregivers were grouped into two categories (sixty years and under and over 
sixty years of age). Seventy percent of the caregivers were over sixty years of age while thirty 
percent were under sixty years of age. The average age of the caregivers was sixty-four.
An independent samples t-test was performed to test the significance of the mean perceived 
stress scores and age category. Table 4.4 displays the results of this test.
Table 4.4: Independent Samples T-Test for Perceived Stress Score and Age Category 
Group Statistics
Age category! N Mean
Stress Score 60 and under 9 6.9667
Over 60 20 5.4225
Caregivers sixty years of age and under displayed a higher mean stress score of 6.96 out of 10.0, 
while caregivers over the age of sixty had a mean stress score of 5.42 out of 10.0, concluding 
that caregivers sixty years of age and under have a higher level of perceived stress than 
caregivers over the age of sixty.
77
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Independent Samples Test
Levene's Test 
for Equality of 
Variances t-test for Equality o f Means
F Sig. T Df Sig. (2-tailed)
Stress Score Equal variances 
assumed .449 .508 1.778 27 .087
Equal variances 
not assumed 1.551 11.680 .147
The difference between variances is not significant; therefore, the t-test for independent samples 
of equal variances was used. The difference between means is significant at the 0.10 level.
Figure 4.6 displays a visual representation of the perceived stress scores between the age groups 
(60 years and under and over 60 years).
Figure 4.6: Perceived Stress Scores According to Age Category
60 and under Over 60
u
«m MB SIB
Stress Score Stress Score
Although a greater number of caregiver were in the over sixty age category, caregivers who were 
sixty and under consistently displayed higher perceived stress scores.
78
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Type of Caregiver (Adult Child or Spouse)
Figure 4.7 displays a visual representation between two types of caregivers (adult child and 
spouse).
Figure 4.7: Type of Caregiver
Spouse Adult child
Type of Caregiver
Of the caregiver support group members, 58.1 percent were looking after a parent in need, while 
41.9% of caregiver support group members were looking after a spouse.
An independent samples t-test was performed to test the significance between the mean stress 
scores and type of caregiver (spouse or adult child). The results of this test are displayed in 
Table 4.5.
Table 4.5: Independent Samples T-Test for Perceived Stress Score and Type of Caregiver
Group Statistics
Type of
Caregiver N Mean
Stress Score Spouse 13 5.8692
Adult child 18 5.7222
79
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
The mean stress scores were very close when comparing spouses to adult children caregivers. 
The mean stress score for spousal caregivers was 5.86 out of 10.0 and 5.72 out of 10.0 for adult 
children caregivers.
Independent Samples Test
Levenes Test 
for Equality of 
Variances t-test for Equality o f Means
F Sig. T Df Sig. (2-tailed)
Stress Score Equal variances 
assumed 3.022 .093 .185 29 .855
Equal variances 
not assumed .204 26.605 .840
Equal variance was significant at the 0.10 percent level. As a result, t-test for equality of means 
under the category of equal variances not assumed was used. No significance was found 
between type of caregiver and perceived stress score.
Marital Status of the Caregivers
Figure 4.8 provides a visual representation of the marital status of the caregivers in this sample.
80
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Figure 4.8; Marital Status of Caregivers
100
OcJ
ü0
2
_)
Single Married Divorced Widowed
Marital Status of Caregiver 
The majority of caregiver support group members were married (78.1%), followed by caregivers
who were widowed (12.5%), divorced (6.3%) and single (3.1%).
To test for any significant linkages to stress, a One-Way ANOVA was performed to compare the 
mean stress score for all categories of marital status (single, married, divorced and widowed). 
Table 4.6 displays the results of this test.
81
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Table 4.6: One-Way ANOVA for Perceived Stress Score and Marital Status
Descriptives
Stress Score
95% Confidence Interval 
N Mean for Mean Minimum Maximum
Lower Upper
Bound Bound
Single 1 8.3000 8.30 8J0
Married 25 5.5380 4.6642 6.4118 .80 9.70
Divorced 2 9.1000 -2.3356 20.5356 8.20 10.00
Widowed 4 5.6000 3.6221 7.5779 4.50 6.75
Total 32 5.8547 5.0787 6.6307 .80 10.00
The mean stress score was highest for caregivers who were divorced (9.1 out of 10.0), followed 
by 8.3 out of 10.0 for single caregivers. The mean stress score for widowed caregivers was 5.60 
and 5.53 for married caregivers. The 95 percent confidence interval for mean stress score was 
between 4.66 and 6.41 out of 10.0. The minimum stress score was 0.80 out of 10.0 and the 
maximum stress score was 9.70. Due to the small sample size, individuals who fell into the 
categories of single, divorced or widowed were minimal. Thus, these higher mean stress scores 
may be attributable to chance factors.
ANOVA
Stress Score
Sum of 
Squares Df Mean Square F Sig.
Between Groups 29.810 3 9.937 2.445 .085
Within Groups 113.806 28 4.065
Total 143.617 31
Significance was found between marital status and perceived stress score at the 0.10 level. 
Figure 4.9 displays visual representations of perceived stress scores in relation to marital status.
82
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Figure 4.9: Perceived Stress Scores According to Marital Status
Single McrriMt
1- - -,- -■ -*
5 •'
II
2xn txB §m t a z a  *m t a  
S tre n  Score Streee Score
Although higher stress scores were displayed by caregivers who were single, divorced and 
widowed, very few caregivers are represented in these categories, thus a wider distribution of 
stress scores is evident for caregivers who are married possible due to the greater number of 
caregivers who fall into this category.
Employment Status of Caregivers
Figure 4.10 displays a visual representation of the employment status among caregivers in this 
sample.
83
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Figure 4.10: Employment Status of Caregivers
CD 10"
Full time Part time Retired Not employed Other
Em ploym ent Status of Caregiver 
The majority of the caregivers in this sample were retired (66.7 percent), followed by caregivers
who were employed full time (15.2 percent), caregivers who worked part time, were not
employed or fell into the “other” category each constituted 6.1 percent of the sample.
To test for significant linkages to stress, a One-Way ANOVA was performed to compare the 
mean stress scores for all categories of employment status (full time, part time, retired, not 
employed and other). Table 4.7 displays the results of the One-Way ANOVA test.
84
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Table 4.7: One-Way ANOVA for Perceived Stress Score and Employment Status
Descriptives
Stress Score
95% Confidence Interval 
N Mean for Mean Minimum Maximum
Lower Upper
Bound Bound
Full time 5 6.5400 2.2479 10.8321 .90 9.70
Part time 2 3.7000 -33.1480 40.5480 .80 6.60
Retired 21 5.5071 4.8596 6.1547 2.05 7.60
Not
employed 2 7.6250 .3189 14.9311 7.05 8 J 0
Other 2 8.1750 -15.0138 31.3638 6.35 10.00
Total 32 5.8547 5.0787 6.6307 .80 10.00
Caregivers who fell into the “other category” had the highest mean perceived stress score of 8.15 
out of 10.0 (these other categories were self-employed (rental landlord) and casual work). The 
second highest mean stress score (7.62 out of 10.0) was displayed by caregivers who were not 
employed , followed by caregivers who worked full time, (6.54 out of 10.0) and retired 
caregivers (5.50 out of 10.0) while the lowest perceived stress score were displayed by part time 
caregivers (3.70 out of 10.0).
ANOVA
Stress Score
Sum of 
Squares Df Mean Square F Sig.
Between Groups 31.206 4 7.801 1.874 .144
W ithin Groups 112.411 27 4.163
Total 143.617 31
85
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Multiple Comparisons
(I) Employment 
Status of 
Caregiver (J) Employment Status o f Caregiver Sig.
Scheffe Full time Part time .604
Retired .902
Not employed .981
Other .920
Part time Full time .604
Retired .836
Not employed .464
Other
Retired Full time .902
Part time .836
Not employed .742
O ther .548
Not employed Full time .981
Part time .464
Retired .742
Other .999
Other Full time .920
Part time J 3 3
Retired .548
Not employed .999
LSD Full time Part time .108
Retired
Not employed .530
Other .347
Part time Full time .108
Retired .242
Not employed .065
O ther .037
Retired Full time .318
Part time .242
Not employed .172
Other .089
Not employed Full time .530
Part time .065
Retired .172
O ther .790
Other Full time .347
Part time .037
Retired .089
Not employed .790
86
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
A significant difference at the 10 percent level was found between the categories “part time” and 
“other.” The homogenous subsets below visually display the significant difference of the two 
categories “part time” and “other” as each fell into two separate categories.
Stress Score
Employment Subset for alpha = . 10
Status of 
Caregiver N 1 2
Tukey B(a,b) Part time 2 3.7000
Retired 21 5.5071 5.5071
Full time 5 6.5400 6.5400
Not employed 2 7.6250 7.6250
Other 2 8.1750
Scheffe(a.b) Part time 2 3.7000
Retired 21 5.5071
Full time 5 6.5400
Not employed 2 7.6250
Other 2 8.1750
Sig. .175
Means for groups in homogeneous subsets are displayed, 
a Uses Harmonic Mean Sample Size = 2.861.
b The group sizes are unequal. The harmonic mean of the group sizes is used. Type I error levels are not guaranteed.
According to the Tukey’s B homogeneous subset test, a significant difference was displayed 
between the categories of part time and other, due to the significant difference of mean stress 
scores.
Living Arrangements between Caregiver and Care Receiver
Figure 4.11 displays a visual representation of the living arrangements among this sample of 
caregivers.
87
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Figure 4.11: Living Arrangements between Caregiver and Care Receiver
Yes No
Live together
The majority of caregiver support group members (62.5%) did not live with the care receiver 
mainly because the care receiver was residing in long-term care. Of this sample, 37.5 percent 
resided with the care recipient.
An independent samples t-test was performed to test the significance of mean stress scores to 
living arrangements. Table 4.8 displays the results of this test.
Table 4.8: Independent Samples T-Test for Perceived Stress Score and Living 
Arrangements 
Group Statistics
Live together N Mean
Stress Score Yes 12 5.9250
No 19 5.6947
88
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
The mean stress score for caregiver and care receivers that live together was 5.92 out of 10.0. 
Caregivers and care receivers who did not live together followed closely behind with a mean 
stress score of 5.69 out of 10.0.
Independent Samples Test
Levene's Test 
for Equality 
o f Variances t-test for Equality of Means
F Sig. t Df Sig. (2-tailed)
Stress Score Equal variances 
assumed .007 .933 .286 29 .777
Equal variances 
not assumed .297 26.233 .769
The difference between variances was not significant; therefore, the t-test for independent 
samples of equal variances was used. No statistical significance was found between living 
arrangements and perceived stress score.
Stage of Alzheimer Disease of Care Receivers
Figure 4.12 displays a visual representation of the stage of Alzheimer disease (early, middle/late 
and deceased) of care receivers in this sample.
89
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Figure 4.12: Stage of Alzheimer Disease of Care Receivers
Early Middle/Late Deceased
Early or Middle/Late Stage 
The majority of care receivers were in the middle to late stage of Alzheimer Disease (62.5%) and
25.0% of care receivers were in the early stage of the disease. A small portion of the sample of
care receivers were deceased (12.5%).
To test for any significant linkages to stress, a One-Way ANOVA was performed to compare the 
mean stress score for stage of Alzheimer disease (early, middle/late, and deceased). Table 4.9 
displays the results of this test.
90
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Table 4.9: One-Way ANOVA for Perceived Stress Score and Stage of Disease
Descriptives
Stress Score
95% Confidence 
N Mean Interval for Mean Minimum Maximum
Lower Upper
Bound Bound
Early 8 5.5313 4.1729 6.8896 3.75 8.20
Middle/Late 19 5.6395 4.5128 6.7662 .80 9.70
Deceased 4 6.9750 3.3906 10.5594 4.55 10.00
Total 31 5.7839 4.9953 6.5724 .80 10.00
The highest mean perceived stress scores were found among caregivers of deceased care 
receivers (6.97 out of 10.0), followed by caregivers who were looking after someone in the 
middle/late stages of Alzheimer disease (5.63 out of 10.0), while the lowest perceived stress 
scores were displayed by caregivers who were looking after someone in the early stages of 
Alzheimer Disease (5.53 out of 10.0).
ANOVA
Stress Score
Sum of 
Squares Df Mean Square F Sig.
Between Groups (x582 2 3.291 .698 .506
Within Groups 132.060 28 4.716
Total 138.642 30
91
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Multiple Comparisons
(1) Early or (J) Early or
Middle/Late Middle/Late
Stage Stage Sig. 90% Confidence Interval
Lower Upper
Bound Bound
Scheffe Early Middle/Late .993 -2.1560 1.9396
Deceased .561 -4.4192 1.5317
Middle/Late Early .993 -1.9396 2.1560
Deceased .543 -4.0085 1.3374
Deceased Early .561 -1.5317 4.4192
Middle/Late .543 -1.3374 4.0085
LSD Early Middle/Late .907 -1.6653 1.4488
Deceased .287 -3.7061 .8186
Middle/Late Early .907 -1.4488 1.6653
Deceased .273 -3.3679 .6968
Deceased Early .287 -.8186 3.7061
Middle/Late .273 -.6968 3.3679
Stress Score
Subset for 
alpha = .10
Early or
Middle/Late Stage N 1
Tukey B(a,b) Early 8 5.5313
Middle/Late 19 5.6395
Deceased 4 6.9750
Scheffe(a,b) Early 8 5.5313
Middle/Late 19 5.6395
Deceased 4 6.9750
.470
Means for groups in homogeneous subsets are displayed, 
a Uses Harmonic Mean Sample Size = 7.015.
b The group sizes are unequal. The harmonic mean of the group sizes is used. Type I error levels are not guaranteed.
No significance was found between perceived stress score and stage of disease according to the 
One-Way ANOVA test and Tukey’s and Sceffe’s homogenous subset tests. As displayed above 
all stress scores fell into one column due to the closeness of mean stress scores among all stages 
of disease (early, middle/late and deceased).
92
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Use of Respite Care (Use or Have Used Respite)
Figure 4.13 displays a visual representation of use of respite care among this sample of 
caregivers.
Figure 4.13: Use of Respite Care
0_ 0
Yes No
Use or have used respite
A slightly smaller percentage of caregivers from this sample indicated that they use or have used 
respite care (51.6 percent), while 48.4 percent indicated that they have never used respite care. 
Users and former users were grouped together due to the small number of caregivers currently 
utilizing respite care.
An independent samples t-test was performed to test the significance of mean stress scores to 
respite utilization. Table 4-10 displays the results of this test.
Table 4.10: Independent Samples T-Test for Perceived Stress Score and Use of Respite 
Care
Group Statistics
Use or have used
respite N Mean
Stress Score Yes 16 6.3156
No 15 5.2167
93
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
The mean stress score was slightly higher for caregivers who stated that they use or have used 
respite care (6.31 out of 10.0). For caregivers who have never used respite care, the mean stress 
score was 5.21 out of 10.0.
Independent Samples Test
Levene's Test 
for Equality of 
Variances t-test for Equality o f Means
F Sig. T Df Sig. (2-tailed)
Stress Score Equal variances 
assumed .488 .491 1.448 29 .158
Equal variances 
not assumed 1.458 28.413 .156
The difference between variances was not significant; therefore, the t-test for independent 
samples of equal variances was used. No statistical significance was found between utilization 
of respite care and perceived stress score.
Barriers to Respite Utilization
Figure 4.14 provides a visual representation of caregivers who experienced barriers to respite 
utilization versus caregivers who did not experience barriers to respite utilization.
94
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Figure 4.14: Barriers to Respite Utilization
100
80
60
40
20
I
Barriers to Respite
Of caregivers in this sample, 78.1 percent did not identify any barriers to respite utilization while 
21.9 percent did identify a barrier to respite utilization.
An independent samples t-test was performed to test the significance of mean stress scores to 
barriers to respite utilization. Table 4.11 displays the results to this test.
Table 4.11: Independent Samples T-Test for Perceived Stress Score and Barriers to Respite 
Utilization
Group Statistics
Barriers to Respite N Mean
Stress Score Yes 7 6.4357
No 25 5.6920
Caregivers who identified one or more barriers to respite utilization displayed a mean stress 
score of 6.4 out of 10.0, slightly higher than caregivers who did not identify one ore more 
barriers to respite utilization who displayed a mean stress score of 5.69 out of 10.0.
95
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Independent Samples Test
Levene’s Test 
for Equality of 
Variances t-test for Equality o f Means
F Sig. T Df Sig. (2-tailed)
Stress Score Equal variances 
assumed 1.910 .177 .803 30 .428
Equal variances 
not assumed 1.142 20.060 .267
The difference between variances was not significant; therefore, the t-test for independent 
samples of equal variances was used. No statistical significance was found between barriers to 
respite utilization and mean perceived stress score.
Help from Family and Friends
Figure 4.15 displays a visual representation of caregivers who have received or have not received 
help from family and friends two or more times a week.
96
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Figure 4.15: Have Family Help (two or more times a week)
8 0 '
c(D
2
CD
CL
Have fam ily help
Help from family and friends at least two or more times a week was noted by 29.0% of the 
caregivers, while 71.0% of the caregivers indicated that they did not get help from family and 
friends at least two times a week.
An independent samples t-test was performed to test the significance of mean stress scores to 
caregivers who have and have not received help from family and friends two or more times a 
week. Table 4.12 displays the results of this test.
Table 4.12: Independent Samples T-Test for Perceived Stress Score and Family Help
Group Statistics
Have family help N Mean
Stress Score Yes 9 4.9278
No 22 6.1341
97
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
The caregivers that indicated that they did not have help from family and friends two or more 
times a week displayed the highest mean stress score (6.13 out of 10.0) while caregivers who did 
have family help two or more times a week had a mean stress score of 4.92 out of 10.0.
Independent Samples Test
Levene's Test 
for Equality of 
Variances t-test for Equality o f Means
F Sig. t df Sig. (2-tailed)
Stress Score Equal variances 
assumed .494 .488 -1.444 29 .160
Equal variances 
not assumed -1.368 13.410 .194
The difference between variances was not significant, therefore; the t-test for independent 
samples for equal variances was used. No statistical significance was found between family help 
and mean perceived stress score.
Caregivers Perceived Difficulty in Asking for Help
Caregivers were asked to what degree they agreed or disagreed with the following statement, "I 
have difficulty asking for help in a situation where I feel stressed"
Figure 4.16 displays a visual representation of the level of perceived difficulty in asking for help 
when stressed among this sample of caregivers.
98
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Figure 4.16: Caregivers Perceived Difficulty in Asking for Help
strongly Agree Disagree
Agree Strongly Disagree
“Difficulty asking for help when I feel stressed"
When caregivers were asked to rate the question “I have difficulty asking for help in a situation
where I feel stressed,” 23.3 percent of the sample answered ‘strongly agree’ with this statement,
while 46.7 pereent stated that they ‘agree’ with this statement. Those who noted that they
‘disagree’ constituted 16.7 percent of the sample, while 13.3 percent noted that they ‘strongly
disagree’.
A correlation was performed using both the Pearson Method and Kendall’s Tau B Method 
Table 4.13 displays the results from these tests.
Table 4.13: Correlation between Perceived Stress Score and Perceived Difficulty in Asking 
for Help
Correlations
"Difficulty 
asking for help 
when I feel 
Stress Score stressed "
Kendall's tau_b Stress Score Correlation Coefficient 1.000 -.272
Sig. (2-tailed) .058
N 32 30
"Difficulty asking for Correlation Coefficient -.272 1.000
help when I feel Sig. (2-tailed)
stressed" .058
N 30 30
99
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
There was a negative correlation found between perceived stress score and difficulty in asking 
for help when stressed. The answers to the question “I have difficulty asking for help when 
stressed were coded into SPSS as follows: 1 = Strongly Agree, 2 = Agree, 3 = Disagree, 4 = 
Strongly Disagree. Hence, since a negative correlation was found this means that the higher 
degree of perceived difficulty in asking for help is linked to a higher the perceived stress score.
Figure 4.17 displays a visual representation of perceived stress scores among the different levels 
of perceived difficulty in asking for help when stressed.
Figure 4.17: Perceived Stress Scores According to Perceived 
Difficulty in Asking for Help
strongly Agree Agree
Disagree Strongly Disagree
I  .
I I I I
zm «in #m u s «a u s
Stress Score Stress Score
100
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Caregivers that ‘strongly agree’ and ‘agree’ that they have difficulty asking for help when 
stressed displayed higher perceived stress scores as evident in the top two graphs. Caregivers 
who ‘disagree’ or ‘strongly disagree’ with this statement were more likely to show lower 
perceived stress scores with the exception of one caregivers who displayed high stress in the 
‘strongly disagree’ chart.
Caregivers Frequency of Self-Care Behaviors
Caregivers were asked to rate their frequency of self-care behaviors (reading, napping, 
exercising, watching television, spending time with other family members and friends) before 
caregiving and since becoming an Alzheimer caregiver). Figure 4.18 displays a visual 
representation of self-care patterns among this sample of caregivers.
Figure 4.18: Caregivers Frequency of Self-Care Behaviors
6 0 '
Increase or same Decrease
Self-Care
101
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
There was an even split between caregivers who increased or maintained self-care behaviors to 
caregivers who decreased self-care behaviors (50 percent for each group).
An independent samples t-test was performed to test the significance of mean stress scores to 
frequency of self-care. Table 4.14 displays the results of this test.
Table 4.14: Independent Samples T-Test for Perceived Stress Score and Frequency of 
Self-Care
Group Statistics
Self-Care N Mean
Stress Score Increase or same 14 4.7107
Decrease 14 7.0643
Caregivers who increased or maintained self-care behaviors a lower mean stress score was 
evident (4.71 out of 10.0) while caregivers who decreased self-care behaviors displayed a higher 
mean stress score of 7.06 out of 10.0
Independent Samples Test
Levene's Test 
for Equality 
of Variances t-test for Equality of Means
F Sig. T df Sig. (2-tailed)
Stress Score Equal variances 
assumed .587 .451 -3.137 26 .004
Equal variances 
not assumed -3.137 24.810 .004
The difference between variances was not significant, therefore; the t-test for independent 
samples for equal variances was used. A significant difference was found at the 0.01 level for 
self-care and perceived level of stress. Therefore, Alzheimer caregiver support group members
102
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
who displayed a decrease in self-care behavior were more likely to show higher levels of 
perceived stress.
Figure 4.19 provides a visual representation of perceived stress scores among caregivers in this 
sample who increased or maintained self-care behaviors with caregivers who decreased self-care 
behavior.
Figure 4.19: Perceived Stress Score According to Frequency of Self-Care
Increase or same Decrease
tjn  #m * m  *in am 
Stress Score Stress Score
The first chart displays the likelihood of lower perceived stress levels among caregivers who 
maintained or increased self-care behaviors while caregivers who decreased self-care behaviors 
were more likely to display higher levels of stress as indicated in the second chart.
103
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Open Ended Survey Questions:
Each o f the following three open-ended questions were transcribed and grouped into mutually 
exclusive categories. The left-hand column o f each table describes the category name with 
examples. The number o f caregivers which gave responses that fe ll into the category is listed in 
the middle column. The right hand column provides examples o f caregiver answers to the 
proposed question. Some caregivers gave responses which categorically fe ll into more than one 
column; as a result, the response from  each caregiver may be represented in more than one 
category. For a compete list o f all caregiver responses fo r  all three questions please see 
Appendix F.
Question:
“As a caregiver experiencing Alzheimer Disease, what types o f services would you like to see in 
the fu ture?”
Justification:
This question was asked because formal systems of help have been traditionally formed without 
consulting informal parties who are the clients of care. Formal services are far from diverse and 
are classified into neat categories and dominated by eligibility criteria, inflexible hours, waiting 
lists and other barriers enforced through government bureaucracy. This question provided 
insight into how to meet the needs in the ever-growing and diverse population of informal 
Alzheimer caregivers.
104
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Response Categories Percentage of Selected Caregiver Responses
Caregivers
Increased education “A vigorous attempt to provide 
20.0%
to staff, general public education about this disease to 
(4 out of 20 caregivers)
education with regards to fam ily physicians, also to the 
services available to general public. Social get 
caregivers togethers fo r  those with this 
information about long­ disease and their caregivers-for 
term care interaction and sharing. ”
“Knowledgeable and informed 
source fo r  everyday coping, and 
future planning, e.g., placement 
is required and what to expect. 
Monthly updates on health both 
mental and physical o f loved 
one, what resources are 
available besides busy doctors. ”
“An educational link where 
caregivers can leave a legacy o f  
caregiving situations so that
105
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
others may use the information 
and grow. ”
Increase and improve support
65.0% “The availability o f respite care 
• reduce barriers to respite 
in our area is inadequate and 
care (increase availability, (13 out of 20 caregivers)
not readily available. The need 
increase funding, longer 
fo r  care is an issue. Availability 
hours)
o f respite caregivers willing to 
• a tool to address care 
spend time with the resident 
receiver refusal to respite 
when caregivers need a day to 
care
relax”.
• increase input from 
doctors
“Transportation fo r  caregivers 
and care recipients fo r  
shopping, doctors appointments, 
etc., fo r  caregivers with no 
vehicles. ”
“I  am very satisfied that what 
out there is adequate. The only 
problem is that too many 
caregivers either do not or
106
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
cannot (due to the pressure from  
the one being cared for) make 
use o f available services. ”
Long-term care improved
30.0% “Increase: Number o f 
• more staff
beds/openings available; wider 
•  wider choice of facilities (6 out of 20 caregivers)
choice o f facilities. More nurses- 
•  greater availability of beds
gerontology training. ”
• more activities and 
services within long-term 
“One on one care fo r  Alzheimer 
care
patient, better physical space fo r  
personal visits, cheaper 
subsidized nursing home space, 
private rooms. ”
“Respite services in a nursing 
home, visiting on a regular basis 
(3 to 4 times a week sometimes 
difficult). I f  you know a respite 
person would visit it would give 
you a day off. ”
107
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
In summary, the caregiver’s responses fell into three mutually exclusive categories, increase 
education, increase and improve support and improve long-term care. Of the twenty-three 
respondents, over half placed emphasis on increased and improved support (65 percent). Those 
wanting aspects of long-term care improved constituted 30 percent, while 20 percent requested 
increases in education regarding aspects of caregiving.
Question:
“Stress experienced while caregiving may be different fo r  all caregivers. To value your unique 
experience, please describe what may have contributed to your stress in a few  words or 
sentences below. ”
Justification:
This provided more insight into the perceived stress of Alzheimer caregivers as they were given 
a chance to articulate what they thought contributed to the stress experienced in their roles.
Response Categories Percentage Selected Caregiver Responses
of
Caregivers
Care receiver symptoms “24 hour care and supervision need fo r  
15.0%
•  managing challenging creative ideas as symptoms and behavior 
(3 out of 20 
behavior change, managing challenging behavior, in 
caregivers)
• denial from care recipient the advanced stages resistance to care and 
•  behavioral changes the physical strength needed to care fo r  your
108
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
loved one. The early grieving fo r  a loved one 
who is slowly wasting away. ”
Caregiver symptoms “Continued complete care at all hours day 
40.0%
•  lack of sleep and night, causing lack o f rest and physical
(8 out of 20 
•  exhaustion stress.
caregivers)
•  not eating properly
• feeling guilty “Needing to be there, visit more often, guilt 
that I  cannot look after her at home. ”
Lack of support “Family and friends seem to shy away from  
20.0%
•  no help or lack of people with dementia. When they do come 
(4 out of 20 
understanding from family around, which my husband really enjoys, he 
caregivers)
and friends is at his very best. Then they don’t 
•  inability to seek help understand how I  feel so stressed. ”
109
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Long-term care “Mom enjoyed independent living with help 
10%
• long-term care placement until 90 years old. Just seeing our mother in 
(2 out of 20 
• unsatisfied with long-term this state and stage o f her life is very 
caregivers)
care stressful. She has been a very good mom and 
having had to place her in a facility was 
extremely stressful. Although unaware o f her 
surroundings, most o f the time she 
recognizes her children but sometimes 
remembers us younger than we are. ”
Lack of control
“I worry about what the future will bring. I  
unable to control the 25.0%
am doing fine so far, but I  wonder i f  the 
impacts of the disease (5 out of 20 
demands from  my own family become 
worried about what the caregivers)
greater, will I  still be able to do a good job. ”
future will bring
“Seeing my mother deteriorate and not be 
able to do anything about it. ”
110
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Instrumental changes “Lots o f  running around trying to straighten
1 0 %
• extra errands to run things out and work fo r  my m om ’s best
(2 out of 20 
• lack of personal life interest. Exhaustion. ”
caregivers)
In summary, answers were divided into six mutually exclusive categories (care receiver 
symptoms, caregiver symptoms, lack of support, long-term care, lack of control, and 
instrumental changes). The majority of caregivers (40 percent) reported that their own 
symptoms contributed to their stress. Also reported as stress contributors were lack of control 
(25 percent), lack of support (20 percent), long term care (10 percent) and instrumental changes 
(10 percent).
Question:
“In a few  sentences, how would you describe your experience as a caregiver?”
Justification:
This question allowed caregivers to articulate their experience from their point of view. This 
provided further insight into the complex and diverse role of informal Alzheimer caregiving.
Response Categories Percentage Selected C aregiver Responses
of Caregivers
1 1 .0 %
Positive “I seen this happening slowly to my father 
(3 out of 27 
over the last year. I  am very realistic person 
caregivers)
always facing the problem head on. This is
I l l
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
why I have learned to accept things the way 
they are and live with them. I  have used this 
philosophy all my life and it works fo r  me. ”
48.0%
Negative “The experience has been the most difficult 
(13 out of 27 
thing that I  have had to handle. I  feel very 
caregivers)
lonely at times. This disease has changed 
our lives in many ways and I  fee l this will 
only get worse. ”
37.0%
Positive and Negative “Each day represents a new outlook and 
(10 out of 27 
approach to the care you need to give, and 
caregivers)
care you need to give yourself. Caregiving 
teaches priorities, to appreciate the 'little 
things like a hearty laugh with the 
Alzheimer person, family member friend or 
stranger!! O f course, there are moments one 
would like to walk away but it is like a job, it 
gets done. Opportunity to do ‘on the spur o f 
the moment’ activities are limited. ”
112
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Almost half of the caregivers had very mixed feelings as to whether caregiving was a positive or 
negative experience. While 48 percent of caregivers identified their experience in negative 
terms, 37 percent described their experience in both positive and negative terms. Only 11 
percent of the caregivers gave a truly positive articulation in their response. This exemplifies the 
trying experience of Alzheimer caregiving and its impact on this population of caregivers.
Conclusions:
Overview of Hypotheses and Results from this Study
Support Group Characteristics
Hypothesis Findings from this study Explanation
Caregivers who have Although the finding was Although length
been attending the not statistically of support group
Alzheimer support group significant, caregivers attendance has
fo r  2 years or more who have been attending been studied
experience lower the support group for less minimally in the
perceived stress than than 2 years had a mean caregiving
caregivers who have been stress score that was literature, this
attending the Alzheimer slightly lower than finding supports
support group fo r  less caregivers who had been the common
than 2 years. attending for 2 years or finding that
more. social support 
leads to positive
113
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
outcomes (e.g.,
increased well
being) (Cohen &
Willis, 1985;
Pierce, Sarason,
& Sarason, 1996;
Sarason,
Sarason, &
Pierce, 1990).
From here one
can hypothesize
that the longer
one is the more
social support
one has, the
better the
outcome.
114
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Care Receiver Characteristics
Hypotheses Findings from this study Explanation
Caregiver support group Although findings were not There is overwhelming 
members who are in the middle statistically significant, support in the literature 
to late stages o f Alzheimer’s caregivers who were looking linking disease progression 
disease experience higher after someone in the middle and to increased levels of stress 
perceived stress than caregiver late stages of Alzheimer Disease (Aneshensel, Pearlin, & 
support group members o f care had higher perceived stress than Schuler, 1993 Baumgarten, 
receiver’s in the early stage o f  caregivers who were looking 1989; Deimling & Bass, 
Alzheimer disease. after someone in the early stage 1986; Eagles, Craig, & 
of Alzheimer Disease. Rawlinson, 1987; George 
Interestingly enough, caregivers & Gwyther, 1896; Gilleard 
who had a deceased care et al, 1984; Hamel et al, 
receiver displayed the highest 1990; Kiecolt-Glaser et al, 
perceived stress. 1987; Poulshock & 
Deimling, 1984; Pruchno 
& Resch, 1989; Wilder, 
Teresi, & Bennett, 1983; 
Bedard et al, 1997; 
Chappell & Penning, 1996; 
Stuckey, Neundorfer, & 
Smyth, 1996; Irvin &
115
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Acton, 1997; Coen et al, 
1997).
Since this study displayed 
high levels of stress among 
caregivers of deceased care 
receivers, this supports the 
research finding that stress 
experienced while 
caregiving is a process 
which carries into the post 
caregiving years (Esterling 
et al, 1994; Bodnar & 
Kiecolt-Glaser, 1994).
Caregiver support group Although findings were not The linkage between living 
members who live with the care statistically significant, with the care receiver and 
receiver experience higher caregivers who live with the higher levels of stress 
perceived stress than caregiver care receiver had higher among caregivers is 
support group members who do perceived stress when compared strongly supported in the 
not live with the care receiver. to caregivers who did not live literature (Bass et al, 1994; 
with the care receiver. Biegel, Sales & Schulz, 
1991; George & Gwyther, 
1986; Pruchno & Resch, 
1989; Schulz et al, 1993;
116
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Aneshensel, Pearlin & 
Schuler, 1993; Zanetti et 
al, 1997; Zarit & Whitlach, 
1992).
Caregiver Characteristics
Hypotheses Findings from this study Explanation
Spousal caregiver support Although findings were not A large portion of the 
group members experience statistically significant, spousal literature supports the 
higher perceived stress when caregivers had higher perceived finding that spouses 
compared to adult children stress when compared to adult experience more stress 
caregiver support group child caregivers. than adult child caregivers 
members. (Antonucci, 1989; 
Shumaker & Brownell, 
1984)
Female caregiver support Female caregivers experienced This finding coincides 
group members experience significantly higher perceived with the overwhelming 
higher perceived stress when stress when compared to male evidence in the literature 
compared to male caregiver caregivers. that supports this finding. 
support group members. (Bass et al, 1994; Biegel, 
Sales & Schulz, 1991; 
George & Gwyther, 1986;
117
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Pruchno & Resch, 1989; 
Schulz et al, 1993; 
Barusch & Spaid, 1989)
Caregiver support group Although findings were not This is supported by 
members who are employed statistically significant, the studies that have 
experience lower perceived opposite relationship was found, concluded that work in the 
stress compared to caregiver caregivers who were employed formal seetor and 
support group members who experienced higher perceived caregiving as an informal 
are not employed. stress compared to caregivers role often conflict with 
who were not employed. one another (Aneshensel et 
al, 1995; Barling, 
However, when employment MacEwen, Kelloway, & 
status was grouped into Higginbottom, 1994; 
subcategories, part time workers Gignac, Kelloway, & 
had the lowest perceived stress Gottlieb, 1996; Gottlieb, 
scores. Kelloway, & Fraboni,
1994; Neal, Chapman, 
Ingersoll-Dayton, &
Emlen, 1993; Scharlach, 
1994).
The older the caregiver support Although findings were not This coincides with 
group member the greater level statistically significant, the findings from Fitting et al 
o f perceived stress reported. opposite relationship was found. (1984) that younger
118
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Caregivers who were 60 years of caregivers tend be the least
age and under had higher happy in their role and
perceived stress compared to have more feelings of
caregivers who were over 60 resentment when
years of age. compared to older
caregivers.
Outside Interventions
Hypotheses Findings from this study Explanation
Caregiver support group Although findings were not This finding is supported 
members who utilize respite care statistically significant, just the by Theis, Moss & Pearson
(day programs, institutional opposite was found. (1994), who found similar 
respite care, in-home Caregivers who stated that they results in their study on 
respite/homecare) experience use or have used respite care the role of respite in 
lower perceived stress than had higher perceived stress reducing stress among 
caregiver support group member when compared to caregivers caregivers.
who do not utilize respite care. who stated that they have never 
used respite.
Caregiver support group Although findings were not This finding is strongly 
members who experience barriers statistically significant, supported in the literature. 
to respite utilization experience caregivers who experienced Barriers to respite care
119
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
higher perceived stress when barriers to respite utilization whether they are 
compared to caregiver support displayed higher perceived psychological or 
group members who do stressed when compared to structural often lead to 
experience barriers to respite caregivers who did not feelings of social 
utilization. experience barriers to respite isolation, guilt and 
utilization. decreased well-being 
which is all linked to 
increased stress.
Caregiver support group Caregiver who decreased This is supported by 
members who have increased or practices of self-care Vitaliano (1997) who 
maintained practices o f  self-care experienced significantly states the association 
experience lower perceived stress higher perceived stress when between caregiver stress 
compared to caregiver support compared to caregivers who and decreases in self-care 
group members who have maintained or increased activities.
decreased the frequency o f  practices of self-care.
practices o f self-care.
Caregiver support group Although findings were not This finding is supported 
members who receive help from  statistically significant, in the literature, as 
another family member (2 or caregivers who received help receiving assistance from 
more times a week) experience from family and friends two or others have been found to 
lower perceived stress compared more times a week were less decrease feelings of 
to caregiver support group stressed when compared to stress. (Hobfoll &
120
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
members who do not receive help caregivers who did not receive London, 1986; Hobfoll & 
from  another family member (2 or help from family and friends Walfisch, 1984; Collijn, 
more times a week). two or more times a week. Appels, & Nijhuis, 1995; 
Franks & Stephens,
1996).
Caregiver support group A positive correlation was This finding is supported 
members who have difficulty found between perceived in the literature as 
asking fo r  help in a situation difficulties in asking for help caregivers who seek out 
where they feel stressed when stressed with perceived support generally 
experience higher perceived stress scores. In other words, experience more positive 
stress compared to caregiver caregivers who strongly agreed caregiving outcomes 
support group members who do or agreed with the statement, “I (Rapp et al, 1998).
not have difficulty asking fo r  help have difficulty asking for help 
in a situation where they feel in a situation where I feel 
stressed. stressed” had higher perceived 
stress when compared to 
caregivers who disagreed or 
strongly disagreed with this 
statement.
121
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Chapter 5 
Discussion
Overview.
This study compliments the wealth of caregiving research which heavily emphasizes the 
stressfulness of the caregiving experienee. With the current trend, as outlined in the Romanow 
report of putting more emphasis on the informal care seetor to sustain the future of our healtheare 
system, this study speaks to the importanee of finding a way to meet the needs of one population 
(the care reeeivers) without sacrificing the needs of another population (the caregivers). As 
emphasized by Hooyman & Gonyea (1995) it is necessary to examine publie polieies and its 
effect on the family care giving experience. The larger politieal umbrella which overshadows 
the caregiving experience has a substantial impact as evidenced by the proposed national health 
agenda of the Romanow Report.
Findings from this study give rise to the realization that Canada’s eurrent structure of formal care 
serviees are seldom utilized or effective in meeting the psychosoeial needs of caregivers. A rigid 
array of neatly categorized formal care serviees whieh characterizes Canada’s current formal 
care system does not compliment the ever growing and diverse population of informal 
caregivers.
This study eompliments Cohen, Kessler & Gordon’s heuristic model of stress (1995) as outlined 
in Figure 2.1 of Chapter 2. The Alzheimer caregiving experience is outlined by caregivers in this 
study through open-ended questioning whieh delineates their adaptive capacities and appraisal of
122
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
demands. Their perceived level of stress is also measured which is essentially influenced by 
their caregiving experience. Negative emotional responses such as caregiving symptoms 
(sleeplessness, anxiety, etc) are noted by caregivers which show the different outcomes of the 
Alzheimer care experience. In terms of this leading to an increased risk of psychiatric and 
physical ailments of caregivers, further examination is needed in future studies as this poses a 
further stress on the current Canadian health care system. As evidenced in Ontario, cuts in health 
care funding have created a decrease in the availability of formal services causing the further 
health deterioration among the elderly population. This has lead to an increase in hospital 
admissions which essentially adds more stress to the health care system (Leydier, 2003).
Findings from this studv.
Findings from this study conclude that present and former use of respite care result in increased 
levels of perceived stress. Although this study has a relatively small sample size, these findings 
support a study by Theis, Moss & Pearson (1994) which outlines the use of respite care and its 
connection to increased levels of stress. The effectiveness of respite should not be measured 
solely on its ability to delay institutionalization but rather by its ability to meet the identified 
needs of the caregivers utilizing the service. Examining what barriers exist to formal services is 
one way of explaining the low utilization of services. However, what remains of greater 
importance is questioning whether or not these services are suitable in the first place. Currently, 
respite care is designed for the care receiver while, ironically adverse consequences of care are 
expected to diminish among caregivers. In order to increase the effectiveness and utilization of 
formal services, examining the types of services that should be offered to meet the needs of this 
diverse and ever-growing population is essential. This study asks various open-ended questions
123
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
with the objectives of understanding the experiences of each caregiver, to note what contributes 
to their stress and what future services should be offered to meet their needs. Of interest, is the 
fact that caregivers are calling for (through their suggestions on future service), more support in 
terms of a rigorous attempt to have a strengthened link with the formal care sector (health care 
staff and respite providers) such as increases in education, better transitional preparation into 
long-term care, and the removal of rigid respite care practices.
In agreement with Petronela et al, (2001), a stronger and more efficient mechanism needs to be 
put into place to address the barrier of the difficulty caregivers have in asking for help when 
stressed. In this study, a significant relationship was found between those caregivers who stated 
that they ‘strongly agree’ or ‘agree’ with the statement, “I have difficulty asking for help when 
I’m in a situation where I feel stressed” and their perceived stress. In other words, caregivers 
who are more likely to have difficulty asking for help are likely to have higher perceived stress. 
A caregiver’s guilt and unwavering commitment to their loved ones often causes them to neglect 
their own health and not seek help when entitled. This strong sense of love and loyalty mixed 
with the adversity of care provision is evidenced in open ended answers to the question asking 
caregivers to describe their experience as a caregiver. The majority of caregivers in this study 
are able to articulate their experience in a positive way while also articulating the hardships and 
difficulties that render the caregiving situation as a challenging and emotionally draining 
experience.
This study also displays a significant relationship between age and perceived stress score. The 
findings from this study conclude that earegivers who are sixty years and under have higher
124
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
perceived stress scores. Caregivers who are sixty and under are more likely to be in the 
workforce; thus, are in the position of trying to meet various demands. Suggestions are made by 
Romanow to encourage workplaces to further support caregivers who take time from work to 
meet the needs of a loved one. In response, the provincial and federal governments are both 
showing recognition through tax breaks and the recent Compassionate Leave initiative. 
Unfortunately, this latter recent policy change provides little help to the growing population of 
Alzheimer informal caregivers who do not always qualify as a result of rigid eligibility rules. 
These methods of caregiver compensation whieh are bounded by government enforced “red 
tape” parallel that of the formal care system of services.
A statistically significant relationship was found between lower perceived stress and caregivers 
who maintain or increase practices of self-care. This signals what the true meaning of respite for 
these caregivers may be. A caregiver’s ability to hold onto an important piece of their life 
through the maintenance of social visits with family and friends, activities that foster relaxation 
and leisure, exercise, or as simple as watching television, may enable them to keep a piece of 
normality in their lives. These self-care initiatives serve two purposes; first, these methods of 
self-care can potentially lead to improved health and well-being among caregivers. Seeondly, 
caregivers can potentially experience a truly rejuvenating experience that is much deserved.
125
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
The Influence of Policy.
Canadian policy tends to be based on a very rigid definition of formal care which does not 
provide the means for caregivers to reap more comprehensive benefits of respite. Although 
Romanow’s proposed homecare initiative may appear to be an example of formal services 
meeting informal services halfway, one must ask, “Is this really what is happening?” More 
emphasis is placed on family and friends to provide care in light of the government’s desire to 
control current growing health care expenditures. As a pivotal guide to the future of Canada’s 
health care system, the recent Romanow Report is driven by the political initiative of saving 
health care dollars by making homecare part of the make-up of our universal health care system. 
While it appears to meet the needs of those both providing and receiving care who express the 
desire to remain at home as long as possible, it may potentially lead to an inereased population of 
caregivers who will suffer from the adverse consequences of caregiving resulting in more 
frequent hospital admissions and an increase in mental health problems.
Romanow (2002) defines the advantages of home care as follows, “People get to stay in their 
own homes with the assurance that someone will be there to monitor their health.” This 
‘someone’ as Romanow refers to is in fact, the informal care network of family members and 
friends who provide eighty-five to ninety percent of homecare to people in need (Ontario 
Coalition of Senior Citizens’ Organizations, 2002). Additionally, in the same section the 
Romanow initiative outlines that homecare would be given to those in need on a priority basis 
sueh as to terminal patients and patients recently discharged from the hospital. As the full 
implieations of the Romanow Report have not yet been felt it is speculated that the apparent 
narrow definition may mean that Alzheimer caregivers fall through the cracks and do not fit the
126
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
criteria of who is considered to be a priority. The only conclusion that one can draw at this time 
from this report is that Canada laeks a clear policy on understanding the different roles and 
contributions of both the informal and formal caregiving systems of Alzheimer disease. 
Furthermore, the issue becomes clouded by indicating that formal home care help for terminal 
patients and patients recently discharged from the hospital will aetually free up homecare 
workers for others in need. However, the likelihood of an increased availability of formal sector 
paid homecare workers appears unlikely due to government cut-backs and strict eligibility 
criteria for formal sector homecare.
Theories.
This structural functionalist initiative has placed informal earegivers into a role that society 
eommonly fails to challenge and merely accepts as an inevitable part of life. However, this 
responsibility needs to be met through a Contextual Fluidity perspective by working in the 
informal caregiving system to establish how to best meet the needs of this population. From a 
Contextual Fluidity framework, we need to understand the needs of these earegivers by getting 
an “insiders view” of the true caregiving experience and to understand the various faetors that 
shape the role of informal care. Support groups ean provide a useful mechanism of getting into 
the informal earegiving system. It provides the opportunity to investigate what earegivers need 
to ease their caregiving experience as opposed to enforcing available formal sourees of 
assistance which may not necessarily meet caregiver needs. As outlined by Hooyman & Gonyea
(1995), support groups carry the main objective of allowing earegivers to “blow off emotional 
steam” so they can continue to stay in their caregiving role which does not get at the broader 
issues that are linked to informal care provision. Formal serviees need to be built from the
127
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
ground up with the informal caregiving population laying the foundation for a system of formal 
services that are unique, practical and diverse. This study gets a first look at this insider’s view 
by asking caregiver support group members to undergo the simple task of documenting what 
types of services they would like to have in the future.
Particularly affected by the government’s structural functionalist approach to health care 
sustainability are women. As a result of a continued expectation of caregiving as a gender 
appropriate role, along with the growing number of people being diagnosed with Alzheimer 
disease, and the continued increase of women in the formal sector, women continue to be put 
into nearly impossible situations where they are expected to thrive in each and every one of the 
their challenging and demanding roles. It has become a socialized expectation for women to 
fulfill caregiving duties despite the devastating physical, mental and financial effects (Hooyman 
& Gonyea, 1995). This study supports the widely documented finding of the heightened stress 
experienced by female caregivers relative to male caregivers. Canada is a country which 
celebrates democracy and places emphasis on equal rights, yet remains unable to change the long 
lasting effects that history has had in shaping the gendered role of women as care providers.
The three theoretical bases of this study; Structural Functionalism, Feminism and Contextual 
Fluidity are inextricably fused together as a large umbrella which helps to explain the caregiving 
experience. Resulting from a Structural Functional value base which created a division of labor 
following the Industrial Revolution, women became ingrained with the responsibility of 
maintaining a functional household and providing duties of care. From this rigid frame of 
referenee emerged a feminist approach to unravel the effects of this expectation on women. A
128
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
logical extension from feminism emerges a Contextual Fluidity outlook which celebrates 
diversity among all individuals and focuses on understanding people as individuals who are 
influenced by their environments. As feminism celebrates women as a distinct group who are 
influenced by a patriarchal past. Contextual Fluidity helps to understand people within their 
unique environments. In this study, understanding the caregivers within their environment of 
Alzheimer care is explored. Caregivers within their environments need to be investigated further 
as the ideas and experiences of these caregivers need to be used as a tool to guide policy as 
opposed to being studied as a product of policy.
Directions for the Future.
There is a need to re-examine our current structure of formal services including methods of 
service design. Respite care needs to take on the characteristics of that given by the caregiver, 
not the formal system that does not fully understand the range of needs of informal caregiving 
systems. A useful model for future direction towards meeting caregiver needs is exemplified in 
the recent government legislation known as the Carer’s National Strategy which is taking place 
in London England. This strategy grew out of the recognition of the importance of including 
caregiving dyads (both the caregiver and care receiver) in the development, delivery and 
evaluation of respite services (Longshaw & Perks, 2000). The Carers Recognition & Service Act 
and the NHS & Community Care Act which falls under the National Strategy umbrella 
recognizes the diverse needs of caregivers and the importance of having a solid partnership 
between formal and informal spectrums of care. Under the Act, it becomes possible to do a 
needs assessment to tailor interventions to specifically meet the needs of caregivers (Ashworth, 
2000). This type of legislation provides a framework for empowering caregivers by giving them
129
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
the opportunity to shape their caregiving experience. Evidenced by the immediate success of 
this strategy, this London initiative provides evidence that trying to meet the needs of informal 
caregivers by investigating how to better meet their needs and changing the rigid definition of 
respite care can achieve positive results.
As the Canadian government strives to find balance between controlling growing health 
expenditures and meeting the needs of informal caregivers, more weight is inevitably placed on 
the informal caregiving sector who will likely continue to provide care regardless of whether 
formal homecare becomes a universal service. Thus, finding a way to keep formal services 
relevant for those in need and available at key moments so that the informal care sector does not 
become overwhelmed is the key to a truly sustainable healthcare system.
Future studies are needed to achieve more definitive conclusions of the array of factors that lead 
to stress among Alzheimer caregivers. A Contextual Fluidity framework can assist in the further 
understanding of the needs of caregivers by taking all potentially influencing aspects to 
caregiving and using this information to investigate future service needs. Such an approach can 
help to build a bridge toward a future of care that can potentially meet both the needs of the care 
receivers and family members and friends who provide care for them. Meeting the needs of care 
receivers as well as those who provide for them is essential in pursuit of future healthcare 
sustainability.
130
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
References
Acton, Gayle, J. (2002). Health-Promoting Self-Care in Family Caregivers. Western Journal o f  
Nursing Research, 24(1), 73-86.
Aeton, Gayle, J., & Kang, Jeonghee. (2001). Interventions to Reduce the Burden o f Caregiving 
for an Adult With Dementia; A Meta-Analysis. Research in Nursing & Health,24: 349- 
360.
Adler, G., Kuskowski, M.A., & Mortimer, J. (1995). Respite Use in Dementia Patients.
Clinical Gerontologist, 15(3), 17-30.
Aldrch, C.K., & Mendkoff, E. (1963). Relocation o f the aged and disabled: A mortality study. 
Journal o f  the American Geriatrics Society, 11, 185-194.
Alzheimer Society o f Canada (2004). Alzheimer Society, Introduction. Retrieved, February 15, 
2004, from http://wvm.alzheimer.ca/english/societv/intro.htm
Alzheimer Society o f Canada (2003a). Alzheimer Society, History of the Organization.
Retrieved, February 15, 2004, from http://www.alzheimer.ca/english/historv-intro.htm
Alzheimer Society o f Canada (2003b). Alzheimer Disease, The Progression o f Alzheimer 
Disease. Retrieved April 21,2003, from
http://www.alzheimer.ca/english/disease/progression-3stages.htm
Alzheimer Awareness Camapign (1999). Alzheimer Caregiver Stress: 10 Warning Signs. 
Retrieved April 21,2003, from
http://vyww.alzheimer.ca/english/care/articles-cgstress-10signs.htm
Aneshensal, C.S., Pearlin, L.I., Mullan, J.T., Zarit, S.H., & Whitlach, C.J. (1995). Profiles in 
caregiving: the unexpected career. San Diego: Academic Press.
Aneshensal, C.S., Pearlin, L.I., & Schuler, R.H. (1993). Stress, Role Captivity, and the Cessation 
o f Caregiving. Journal o f  Health and Social Behavior, 34, 54-70.
Antonucci, T. (1989). Social support influences on the disease process. In L.L. Carstenseen, & 
J.M. Neale (Eds.). Mechanisms o f  psychological influence on physical health: with 
special attention to the elderly (pp. 23-41). New York: Plenum Press.
Armstrong, M. (2000). Faetors affecting the decision to place a relative with dementia into 
XQSxdQnXisA. cdiXQ. Nursing Standard, 14(6), 33-31.
Aronson, Jane (1998). Dutiful Daughters and Undemanding Mothers: Constraining Images of 
Giving and Receiveing Care in Middle and Later Life. In C. Baines, P. Evans, & S. 
Neysmith (Eds.). Women’s Caring: Feminist Perspectives on Social Welfare 
(pp. 114-138). Toronto: Oxford Press.
131
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Aronson, M.K., & Yatzkan, E.S. (1984). Coping with Alzheimer's disease through support 
groups. 347: 3-9.
Ashworth, Mark (2000). 'Time and space': carers' views about respite care. Health and Social 
Care in the Community, 8(1), 50-56.
Barber, C.E., & Pasley, B.K. (1995). Family care o f Alzheimer’s patients: The role o f gender and 
generational relationship on caregiver outcomes. Journal o f  Applied Gerontology, 14, 
172-192.
Barclay, L., Zemcou, A., Blass, J., & Sansone, J. (1985). Survival in Alzheimer’s disease and 
vascular dementias. Neurology, 35, 834-840.
Barling, J., MacEwen, K.E., Kelloway, E.K., & Higginbottom, S.F. (1994). Predictors and 
outcomes o f elder-eare-based interrole conflict. Psychology and Ageing, 9, 391-397.
Barnes, C.L., Given, B.A., & Given, C.W. (1992). Caregivers of elderly relatives: Spouses and 
adult children. Health and Social Work, 17, 282-289.
Barnes, R.F., Raskind, M.A., Scott, M., & Murphy, C. (1981). Problems o f families caring for 
Alzheimer patients: Use o f a support group. Journal o f  the American Geriatrics Society, 
29: 80-85.
Baruseh, A., & Spaid, W. (1989). Gender differences in caregiving: Why do wives report greater 
burden? The Gerontologist, 29, 667-676.
Bass, D.M., McClendon, M.J., Deimling, G.T., & Mukherjee, S. (1994). The influence o f a 
diagnosed mental impairment on caregiver strain. Journal o f  Gerontology, Social 
Sciences, 49, S146-S155.
Baumgarten, M., Battista, R.N., Infante-Rivard, C., Hanley, J.A., Becker, R., & Gauthier,S.
(1992). The psychological and physical health of family members earing for an elderly 
person with dementia. Journal o f  Clinical Epidemiology, 45, 61-70.
Baumgarten, M. (1989). The health of persons giving care to the demented elderly: a critical 
review o f the literature. Journal o f  Clinical Epidemiology, 42, 1137-1148.
Beck, C.K. (1998). Psychosocial and behavioural interventions for Alzheimer disease patients 
and their families. American Journal o f  Geriatric Psychology, j5(2,Suppll): S41-S48.
Bedard, M., Molloy, W., Pedlar, D., Lever, J.A., & Stones, M.J. (1997). Assoeiation between
dysfunctional behaviors, gender and burden in spousal caregivers o f cognitively impaired 
older adults. International Psychogeriatrics, 3, 277-290.
Belle, D. (1982). Lives in stress: Women and depression. Beverly Hills, CA: Sage.
132
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Berry, G.L., Zarit, S.H., & Rabatin, V.X. (1991). Caregiver aetivity on respite and nonrespite 
days: A eomparison o f two serviee approaches. The Gerontologist, 31, 830-835.
Biegal, D.E., Sales, E., Schulz, R. (Eds.). (1991). Family caregiving in chronic illness. Newbury 
Park: Sage Publieations.
Bland, R.C., Newman, S.C., Orm, H. (1988). Period prevalenee of psychiatrie disorders in 
Edmonton. Acta Psychiatr Scand, 77(338), 33.
Bodnar, J., Kietcolt-Glaser, J.K. (1994). Caregiver depression after bereavement: Chronie stress 
isn’t over when it’s over. Psychology & Aging, 9, 372-380.
Bonnel, W.B. (1996). Not gone and not forgotten: A spouse's experienee o f late stage 
Alzheimer's disease. Journal o f  Psychosocial Nursing & Mental Health Services,
34,23-37.
Bosanquet, N., Huyyin, C., & Kurz et al. (1997). Alzheimer's disease: an international 
perspective on care delivery. Health Policy Review Paper No. 11. London:
Imperial College o f Science, Technology and Medicine, University o f London.
Bourgeois, M.S., Schulz, R., & Burgio, L. (1996). Interventions for caregivers o f patients 
with Alzheimer's disease: A review and analysis o f content, process and outcomes. 
International Journal o f  Aging and Human Development, 43, 35-92.
Braithwaite, V. (1996). Understanding stress in informal caregiving: Is burden a problem of the 
màWidvÆil ox sodieXyl Research on Aging, 18, 139-174.
Brodaty, H., Green, A., & Kosehera, A. (2003). Meta-Analysis o f Psychosocial Interventions for 
Caregivers o f People with Dementia. Journal o f  American Geriatrics Society, 51, 657- 
664.
Brodaty, H., & Green, A. (2000). Which caregiver interventions are o f benefit: An evidence 
based approach. Neurobiology o f  Aging, 21(1), 15.
Brodaty, H., & Gresham, M. (1992). Prescribing residential respite care for dementia: Effects of 
respite care on dementia: Effects, side effects, indications and dosage. International 
Journal o f  Geriatric Psychiatry, 7, 357-362.
Brody, Elaine, M. (1995). Prospects for Family Caregiving. In R.A. Kane & J.D. Penrod (Eds.). 
Family Caregiving in an Aging Society: Policy Perspectives. Thousand Oaks: Sage 
Publieations.
Brody, E.M., Kleban, M.H., Johnsen, P.T., Hoffman, C., & Schoonover, C.B. (1987). Work 
status and parent care: A comparison o f four groups o f women. The Gerontologist, 27, 
201-208.
133
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Bruce, D., G., Paley, G. A., Underwood, P. J., Roberts, D., & Steed, D. (2002). Communieation 
problems between dementia carers and general practitioners: effect on access to 
community support services. The M edicalJournal o f  Australia, 777(4^, 186-188.
Brym, R. (1998). New Society, Sociology fo r  the 2 F ‘ Century (2"** ed.). Harcourt Brace 
Canada: Toronto.
Bums, R , Eisdorfer, C., Gwyther, L., & Sloane, P. (1996). Caring for the caregiver. Patient 
Care, 30(18), 108-130.
Burton, L.C., Newson, J.T., Schulz, R., Hirseh, C.H., & German, P.S. (1997). Preventative health 
behaviors among spousal caregivers. Preventative Medicine, 26, 162-169.
Canadian Assoeiation for Community Care (n.d.). Outreach to Informal Caregivers: A Virtual 
Support System. Executive Summary. Retrieved March 2,2004, from 
http://www.cacc-acssc.com/english/pdf/vss-exsum.pdf
Canadian Assoeiation for Community Care and the Canadian Home Care Assoeiation. (2001). 
Written submission to the Commission on the Future of Health Care in Canada, entitled 
Sustaining Canada’s Health Care System: The Role o f  Home and Community Care.
Canadian Study of Health and Aging Working Group. (1994a). Patterns o f earing for people with 
dementia in Canada. Canadian Journal on Aging, 13, 470-487.
Canadian Study o f Health and Aging Working Group (1994b). Canadian Study o f Health
and Aging: study methods and prevalence o f dementia. Canadian Medical Association 
Journal, 150, 899-913.
Caserta, M., Lund, D., Wright, S. & Redbum, D. (1987). Caregivers to dementia patients: The 
utilization o f community services. The Gerontologist, 27, 209-214.
Caswell, L.W., Vitlaiano, P.P., Croyle, K.L., Scanlan, J.M., Zhang, J., & Daruwala, A. (2002). 
Negative Associations o f Chronic Stress and Cognitive Performanee in Older Adult 
Spouse Caregivers. Experimental Aging Research, 29, 303-318.
Chappell, N.L., & Penning, M. (1996). Behavioural problems and distress among earegivers of 
people w \ih  demcnXia. Ageing and Society, 16, 57-73.
Chappell, N. L., Reid, R, Colin., Dow, Elizabeth. (2001). Respite reeonsidered: A typology of 
meanings based on the caregiver's point o f view. Journal o f  Aging Studies, 15, 201-216.
Chenoweth, B., Speneer, B. (1986). Dementia: The experience o f family caregivers. The 
Gerontologist. 26, 267-272.
Chiverton, P., & Caine, E.D. (1989). Education to assist spouses in eoping with Alzheimer's 
disease: A controlled trial. Journal o f  the American Geriatrics Society, 37, 595-598.
134
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Chu, Paul., Edwards, Joy., Levin, Ron., & Thomson, Jim. (2000). The use o f elinical
case management for early stage Alzheimer's patients and their families. American 
Journal o f  Alzheimer Disease and Other Dementia's, 15(5), 284-290.
Clybum, L.D., Stones, M.J., Hadjistavropoulos, T., Tuokko, H. (2000). Predieting Caregiver
Burden and Depression in Alzheimer’s Disease. Journal o f  Gerontology, Social Sciences, 
55B, S2-S13.
Coen, R.F., Swanw ick, G.R.J., O’Boyle, C.A., & Coakley, D. (1997). Behavior disturbance and 
other predietors o f carer burden in Alzheimer’s disease. International Journal of Geriatrie 
Psyehiatry, 12, 331-336.
Cohen, S., Kamarek, T., & Mermelstein, R. (1983). A global measure o f perceived stress. 
Journal o f  Health and Social Behavior, 24, 385-396.
Cohen, S. (1994). Perceived Stress Scale. Retrieved February 4, 2004, from
httD://www.mindgarden.com/Documents/Pereeived%20Stress%20Scale.doc
Cohen, S., Kessler, R.C., & Gordon, L.U. (1995). Strategies for Measuring Psychiatric Stress in 
Studies o f Psychiatric and Physical Disorders (pp. 3-26). In S. Cohen, R.C. Kessler, & 
L.U. Gordon (1995). Measuring Stress. New York: Oxford University Press.
Cohen, D., Luchins, D., Eisdorfer, C., Paveza, G., Ashford, J.W., Gorelick, P., Hirsehman, R., 
Freels, S., Levy, P., Semla, T., Shew, H. (1990). Caring for relatives with Alzheimer 
disease: The mental health risks o f spouses, adult children, and other family earegivers. 
Behavior, Health, and Aging, 1, 171-182.
Cohen, S., & Willis, T.A. (1995). Stress, social support, and the buffering hypothesis. 
Psychological Bulletin, 98, 310-357.
Collijin, D.M., Appels, A., & Nijhuis, F. (1995). Psychological risk factors for cardiovascular 
disease in women: The role of social support. International Journal o f  Behavioral 
Medicine, 2, 219-232.
Cotrell, Victoria (1996). Respite Use by Dementia Caregivers: Preferences and Reasons for 
Initial Use. Journal o f  Gerontological Social Work 26(3/4), 35-55.
Cox, C. (1997). Findings from a statewide program of respite care: a comparison of service 
users, stoppers, and nonusers. The Gerontologist, 37." 511-517.
Cranswick, Kelly (Winter, 1997). Canada's Caregivers. Canadian Social Trends.
Statistics Canada, Catalog no. 11-008-XPE.
Cryns, A., Nichols, R., Katz, L., & Calkins, E. (1989). The hierarehieal strueture o f geriatrie 
patient satisfaetion: An older patient satisfaction scale designed for HMOs. Medical 
Cwe, 27, 802-816.
135
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Cuijpers, P., Hosman, & Munnichs, J.M. A. (1996). Change Mechanisms of Support
Groups for Caregivers o f Dementia Patients. International Psychogeriatrics, 8(4), 575- 
587.
Cummings, J.L., & Jeste, D.V. (1999). Alzheimer's disease and its management in the year 2010. 
Psychiatric Services, 50, 1173-1177.
Dailey, G. (1998). Ideologies o f  caring: Rethinking community and collectivism. London: 
MaeMillan.
Damon-Rodriguez, J.A., Frank, J., Heck, E, et al. (1998). Physician knowledge o f eommunity- 
based care: What's the score? Annual Long-Term Care, 6(4), 112-121.
Dautzenberg, M.G.H., Diederiks, J.P.M., Philipsen, H., Stevens, F.C.J., Tan, F.E.S., & Vemooij 
-Dassen, M.J.F.J. (2000). The competing demands of paid work and parent care: Middle 
-aged daughters providing assistanee to elderly parents. Research on Aging, 22, 165-187.
Deem, R. (1986). All Work and No Play? The Sociology o f  Women and Leisure. Milton Keynes: 
Open University Press.
Deimling, G.T., Bass, D. (1986). Symptoms o f mental impairment among elderly adults and their 
effects on family caregivers. Journal o f  Gerontology, 41,: 778-784.
Deimling, G. (1991). Respite use and caregiver well-being in families earing for stable and 
deelining AD patients. Journal o f  Gerontological Social Work, 18, 117-134.
Della-Buono, M., Busato, R., Mazetto, M., Paccagnella, B., Aleotti, F., Zanetti, O., Bianchetti,
A., Trabueehi, M., & DeLeo, D. (1999). Commimity eare for patients with Alzheimer's 
disease and non-demented elderly people: Use and satisfaetion with services and unmet 
needs in family earegivers. International Journal o f  Geriatric Psychiatry, 14, 915-924.
Doress-Worters, P.B. (1994). Adding Edler Care to Women’s Multiple Roles: A Critieal Review 
of the Caregiver Stress and Multiple Roles Literatures. Sex Roles, 31(9/10), 597-617.
Dorfman, L., Berlin, I.K., & Holmes, C. (1998). Attitudes toward serviee use toward service use 
among wife earegivers o f frail veterans. Social Work in Health Care, 27(4), 39-64.
Draper, B.M., Poulos, C.J., Cole, A.D., Poulos, R.G., & Ehrlich, F. (1992). A eomparison of 
caregivers for elderly stroke and dementia vietims. Journal o f  the American Geriatrics 
Society, 40, 896-901.
Dunkel-Sehetter, C., & Folkman, S., & Lazarus, R.S. (1987). Correlates o f soeial support reeeipt. 
Journal o f  Personality and Social Psychology, 53, 71-80.
Eagles, J.M., Craig, A., and Rawlinson, F. (1987). The psychological well-being o f supporters of 
the demented elderly. British Journal o f  Psychiatry, 150, 293-298.
136
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Edwards, A.B., Zarit, S.H., Stephens, M.A.D., & Townsend, A. (2002). Employed family
caregivers of cognitively impaired elderly: An examination of role strain and depressive 
symptoms. Aging & Mental Health, 6(1), 55-61.
Esterling, B.A., Kiecolt-Glaser, J.K., Bodnar, J.C., Glaser. R. (1994). Chronic stress, social
support and persistent alternations in the natural killer cell response to cytokines in older 
adults. Health Psychology, 13, 291-298.
Estes, C., Swan, J., & Assoeiates. (1993). The long-term care crisis. Newbury Park, CA: Sage.
Family Caregiver Allianee: Clearinghouse Researeh. (1997). Family Caregivers and Consumer 
Choice: Options fo r  In-Home Respite Care. Executive Summary. San Francisco, CA.
Fine, M. & Thompson, C. (1993). A partnership in care? The use o f formal services and informal 
support in the home by home and community care clients. In P. Saunders and S. Shaver 
(Eds.). Theory and Practice in Australian Social Policy: Rethinking the Fundamentals. 
Social Policy Research Centre. University o f NSW, Australia.
Fitting, M.D., Rabins, P.V., & Lucas, M.J. (1984). Caregivers fo r  dementia patients: A
comparison o f  men and women. Paper presented at the 37*'’ Annual Seientific Meeting of 
the Gerontological Society o f America, San Antonio.
Fortinsky, Richard, H. (1998). How Linked Are Physicians to Community Support Serviees for 
Their Patients With Dementia? The Journal o f  Applied Gerontology, 17(4), 480-498.
Franks, M.M., & Stephens, M.A.P. (1996). Soeial support in the context o f caregiving:
Husbands’ provision of support to wives involved in parent care. Journal o f  Gerontology: 
Pscychological Sciences, 5IB, P43-P52.
Fuller, J., Ward, E., Evans, A., & Massam, K. (1979). Dementia: Supportive groups for relatives. 
British Medical Journal, 1, 1684-1685.
Fung, W.Y. & Chien, W.T. (2002). The Effectiveness o f a Mutual Support Group for Family 
Caregivers o f a Relative With Dementia. Archives o f  Psychiatric Nursing, 16(3), 134- 
144.
Gallagher-Thompson, D., Brooks, J.O., Bliwise, D., Leader, J., & Yesavage, J.A. (1992). The 
relations among caregiver stress, "sundowning" symptoms, and eognitive decline in 
Alzheimer's disease. Journal o f  the American Geriatrics Society, 40, 807-810.
Garity, J. (1997). Stress, learning style, resilienee faetors, and ways of coping in Alzheimer 
family caregivexs. American Journal o fA lzheimer’s Disease, 12(4), 171-178.
George, L., & Gwyther, L. (1986). Caregiver well-being: A multidimensional examination 
of family caregivers o f demented adults. The Gerontologist, 26, 253-259.
137
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
George, L.K. (November, 1998). Why won't caregivers use community services? Unexpected 
findings from  a respite demonstration evaluation. Paper presented at the 41®‘ Annual 
Meeting o f the Gerontologieal Society o f America, San Francisco, CA.
Gibson, D., Butkus, E., Jenkins, A., Mathur, S., & Liu, Z. (1996). The respite care needs o f  the 
Australians: Respite review supporting paper 1. Canberra, Australia: Australian Institute 
of Health and Welfare.
Giele, J.Z., Mutschler, P.H., & Orodenker, S.Z. (1987). Stress and burdens o f  caregiving fo r  the 
fra il elderly (Working Paper No.36). Waltham, MA: Brandeis University.
Gignae, M.A.M., Kelloway, E.K., & Gottlieb, B.H. (1996). The impaet o f earegiving on
employment: A mediational model o f work-family conflict. Canadian Journal on Aging, 
15, 525-542.
Gilhooly, M. (1984). The impact o f caregiving on earegivers: Faetors assoeiated with the
psyehologieal well-being of people supporting a dementing relative in the community. 
British Journal o f  Medical Psychology, 57, 35-44.
Gilleard, C.J., Belford, H., Gilleard, E., Whittick, J.E., and Glendhill, K. (1984). Emotional 
distress amongst the supporters o f the elderly mentally infirm. British Journal o f  
Psychiatry, 145, 172-177.
Glasgow, N. (2000). Rural/Urban Patterns o f Aging and Caregiving in the United States.
Journal o f  Family Issues, 21(5), 611-631.
Glosser, G., & Wexler, D. (1985). Partieipants' evaluation of educational/support groups 
for families o f patients with Alzheimer's Disease and other dementia's. The 
Gerontologist, 25: 232-236.
Goehman, I. (1979). Arousal, attribution and environmental stress, (pp.67-92). In LG. Sarason & 
C D. Spielberger. (Eds.). Stress and Anxiety, Vol. 6. Washington: Hemisphere.
Gonyea, J.G. (1995). Middle age. In D. Levinson (Ed.). Eneyelopedia o f marriage and the 
family. New York: MaeMillan
Gonyea, J.G. (1990). Alzheimer's disease support group partieipation and earegiver well-being. 
Clinical Gerontologist, 10, 17-34.
Gonyea, J.G. (1989). Alzheimer's disease support groups: An analysis o f their strueture, format 
and pereeived benefits. Social Work in Health Care, 14, 61-72.
Gonyea, J.G., & Silverstein, N.M. (1991). The role o f Alzheimer's disease support groups in 
families' utilization of community services. Journal o f  Gerontological Social Work, 16, 
43-55.
138
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Gottlieb, B.H., & Johnson, J. (2000). Respite programs for caregivers o f persons with dementia: 
a review with practice implications. Aging & Mental Health, 4(2), 119-129.
Gottlieb, B.H., Kelloway, E.K., & Fraboni, M. (1994). Aspects o f eldercare that place employees 
at risk. The Gerontologist, 34, 815-821.
Grafstrom, M., Fratiglioni, L., Sandman, P.O., & Winblad, B. (1992). Health and social
consequences for relatives o f demented and non-demented elderly. A population based 
study. Journal o f  Clinical Epidemiology, 45, 861-870.
Grasel, Elmar (1997). Temporary Institutional Respite in Dementia Cases: Who Utilizes This 
Form o f Respite Care and What Effect Does It Have? International Psychogeriatrics, 
P(4), 437-448.
Greene, V.L., & Monahan, D.J. (1989). The effect o f a support and education program on stress 
and burden among family caregivers to frail elderly persons. The Gerontologist, 29, 472- 
480.
Greene, V.L., & Monahan, D.J. (1987). The effect o f a professionally guided earegiver support 
and education group on institutionalization of care receivers. The Gerontologist, 19, 175- 
183.
Gubrium, J., & Lynott, R.J. (1987). Measurement and the interpretation o f burden in the 
Alzheimer's Disease experience. Journal o f  Aging Studies, 1 ,265-286.
Haley, W.E., Brown, S.L., & Levine, E.G. (1987). Experimental evaluation o f the effectiveness 
o f group intervention for dementia earegivers. The Gerontolgist, 27, 376-382.
Haley, W.E. (1989). Group intervention for dementia family caregivers: A longitudinal 
perspective. The Gerontolgist, 29, 478-480.
Hamel, M., Gold, D.P., Andres, D., Reis, M., Dastoor, D., Grauer, H., & Bergman, H. (1990). 
Predictors and consequences o f aggressive behaviour of community-based dementia 
patients. The Gerontologist, 30, 206-211.
Harrington, M., Dawson, D., & Bolla, P. (1982). Objective and subjective constraints of 
women’s enjoyment o f leisure. ««<7 XewMze, 15, 203-222.
Harrison, M.J. & Neufeld, A. (1996). Women’s Experiences o f Barriers to Support While 
Caregiving. Health Care fo r  Women International, 18(6), 591-602.
Hausman, C.P. (1979). Short-term counseling groups for people with elderly parents. The 
Gerontologist, 19, 102-107.
Health Canada. (2002). Caregiver in Canada-2002 Final Report. Retrieved September 5, 2003, 
from http://www.he-sc.gc.ca/english/eare/nat profile02/l .html
139
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Health Canada (1997-1998). Seniors Info Exchange: The Future o f Caregiving.
Henderson, K.A., & Allen, K.R. (1991). The ethic of care: leisure possibilities and constraints for 
women. Society and Leisure, 14, 97-113.
Hirseh, C.H., Davies, H.D., Boatwright, F., & Oehango, G. (1993). Effects on a Nursing
Home Respite Admission on Veterans with Advanced Dementia. The Gerontologist, 
33(4), 523-528.
Hobfoll, S.E., & Lerman, M. (1988). Personal relationships, personal attributes, and stress
resistance: mothers’ reactions to their child’s illness. American Journal o f  Community 
Psychology, 16, 565-589.
Hobfoll, S.E., & London, P. (1986). The relationship of self-concept and social support to 
emotional distress among women during the war. Journal o f  Social and Clinical 
Psychology, 4, 189-203.
Hobfoll, S.E., & Walfisch, S. (1984). Coping with a threat to life: A longitudinal study o f self 
-concept, soeial support, and psychological distress. American Journal o f  Community 
Psychology, 12, 87-100.
Hoffmann, R.L., & Mitchell, A.M. (1998). Caregiver burden: Historical development. Nursing 
Forum, 33(4), 5-11.
Hollander, M., & Chappell, N. (2002). Final Report on the National Evaluation o f  the Cost-
Effectiveness o f  Home Care. A Report preparedfor the Health Transition Fund, Health 
Canada. Victoria, Centre on Aging, University o f Victoria.
Homer, A.C., & Gilleard, C.J. (1994). The effect o f inpatient respite care on elderly patients and 
their carers. Age and Ageing, 23, 274-276.
Hooyman, N.R., & Gonyea, J.G. (1995). Feminist Perspectives on Family Care, Policies fo r  
Gender Justice. Thousand Oaks: Sage Publications.
Irvin, B., & Aeton, G. (1997). Stress, hope and well being of women earing for family members 
with Alzheimer’s disease. Holistic Nursing Practice, 11(2), 69-79.
Isenhart, E.G. (Sept/Get 1992). Kin caregivers o f the cognitively impaired elderly: Problems and 
interventions. The American Journal o f  Alzheimer's care and Related Disorders 
Research, 18-23.
Jackson, A., Cooney, C., Walsh, J.B., & Coakley, D. (1991). Caring for dementia sufferers in the 
community: the caregivers' problems. Ir Medical Journal, 84, 51-53.
Jaffee, D. (2001). Organization Theory: Tension and Change. Boston: MeGraw Hill
140
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Jensen, W. (2001). Long-term care o f older adults: the role o f the family. Journal o f  
Gerontological Nursing, 27(2): 36-43.
Joseph, A., & Hallman, B. (1998). Over the hill and far away: Distance as a barrier to the
provision o f assistanee to elderly relatives. Social Science and Medicine, 46(6), 631-639.
Juozapavicius, K.A., & Weber, J.A. (2001). A reflective study o f Alzheimer's caregivers. 
American Journal o fA lzheimer's Disease and Other Dementia's, 16(1), 11-20.
Kaplan, G., Seeman, T., Cohen, R., Knudsen, L., & Guralnik, J. (1987). Mortality among 
the elderly in the Alameda County study: Behavioral and demographic risk factors. 
American Journal o f  Public Health, 77, 307-312.
Kaye, L.W., Turner, W., Butler, S.S., Downey, R. & Cotton, A. (2003). Early Intervention 
Screening for Family Caregivers o f Older Relatives in Primary Care Practices, 
Establishing a Community Health Service Allianee in Rural America. Family & 
Community Health, 26(4), 319-328.
Keating, J. (1979). Environmental stressors misplaced emphasis, (pp. 67-92). In LG. Sarason & 
C D. Spielberger (Eds.). Stress and Anxiety, Vol. 6. Washington: Hemisphere.
Kieeolt-Glaser, J.K., Claser, R., Shuttleworth, E.C., Dyer, C.S., Ogrocki, P., & Speicher,C.E.
(1987). Chronic stress and immunity in family caregivers of Alzheimer's disease victims. 
Psychosomatic Medicine, 49, 523-535.
Kiecolt-Glaser, J.K., Dura, J.R., Speicher, C.E, Trask, O.J., & Glaser, R. (1991). Spousal 
caregivers of dementia victims: longitudinal changes in immunity and health. 
Psychosomatic Medicine, 53, 345-362.
Knight, B.G., Lutzky, S.M., & Macofsky-Urban, F. (1993). A meta-analytic review of 
interventions for caregivers distress: recommendations for future research. The 
Gerontologist, 33, 240-248.
Kosloski, K., & Montgomery, R. J.V., Youngbauer, J.G. (2001). Utilization o f Respite Serviees: 
A Comparison of Users, Seekers, and Nonseekers. The Journal o fA pplied Gerontology, 
20(1), 111-132.
Larkin, J.P., & Hopcrofl, B.M. (1993). In-hospital respite as a moderator o f earegiver stress. 
Health and Social Work, 18, 132-138.
Larrimore, K.L. (2003). Alzheimer Disease Support Group Characteristics: A Comparison of 
Caregivers. Geriatric Nursing, 24(1), 32-49.
Lawton, M.P., Brody, E., & Saperstein, A.R. (1989a). A controlled study o f respite services for 
earegivers of Alzheimer's patients. The Gerontologist, 29, 8-16.
141
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Lawton, M., Brody, E. M., & Saperstein, A. R. (1989b). A Multi-Service Respite Program for 
Caregivers o f Alzheimer's Patients. Journal o f  Gerontological Social Work, 14(1/2), 
41-74.
Lawton, M.P., Moss, M., Kleban, M., Glicksman, A., & Rovine, M.A. (1991). A two-factor 
model o f caregiving appraisal and psyehologieal well-being. Journals o f  Gerontology: 
Psychological Sciences, 46,181-190.
Lazarus, L.W., Stratford, B., Cooper, K., Cohler, B., & Dysken, M. (1981). A pilot study of 
Alzheimer patients' relatives' discussion groups. The Gerontologist, 21, 353-358.
Lee, J.A., Walker, M., & Shoup, R. (2001). Balancing elder care responsibilities work: The 
impact on emotional health. Journal o f  Business & Psychology, 16(2), 277-289.
Lefley, H.P. (1987). Aging parents as caregivers o f mentally ill adult children: an emerging 
social problem. Hospital & community psychiatry, 38, 1063-1070.
Leydier, K. (2004, November 30). Relief eoming at last, patients to be properly housed by 
February. The Chronicle Journal, pp. A l, A2, A6.
Lieberman, M.A., & Tobin, S.S. (1983). The experience o f  old age: Stress, coping and 
survival. New York: Basic Books.
Liken, M., & King, S. (1995). Home health aide serviees: Barriers perceived by dementia 
family caregivers. Home Healthcare Nurse, 13(6), 60-68.
Logan, J., & Spitz, G. (1994). Informal support and the use of formal services by older 
Americans. Journal o f  Gerontology: Social Sciences, 49(1), S25-S34.
Logsdon, C.M., & Robinson, K. (2000). Helping Women Caregivers Obtain Support: Barriers 
and Recommendations. Archives o f  Psychiatric Nursing, 14(5), 244-248.
Longshaw, S., & Perks, A. (2000). Respite care innovations for carers o f  people with dementia. 
British Journal o f  Nursing, 9(16), 1079-?.
Lovett, S., & Gallagher, D. (1988). Psychoedueational interventions for family earegivers: 
Preliminary efficacy data. Behavior Therapy, 19, 321-330.
Lubben, J.E., & Damron-Rodriguez, J. (2003). An International Approach to Community Health 
Care for Older Adults. Family & Community Health, 26(4),338-349.
Maee, N. (1986). Caregiving aspects o f Alzheimer's disease. Business and Health, 3(9),3A-35.
Maee, N.L., & Rabins, P.W. (1999). The 36-hour day: A family guide to caring fo r  persons with 
Alzheimer's disease, related dementing illnesses, and memory loss in later life. Baltimore, 
MD: The Johns Hopkins University Press.
142
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Malonebeach, P.E., & Zarit, S.H. (1991). Current research issues in caregiving to the elderly. 
InternationalJournal o f  Aging and Human Development, 32, 103-114.
MaloneBeach, E., Zarit, S., & Spore, D. (1992). Caregiver's perceptions o f case management and 
community-based services: Barriers to service use. Journal o f  Applied Gerontology, 11, 
146-159.
Martire, L.M., & Stephens, M.A.P. (2003). Juggling Parent Care and Employment
Responsibilities: The Dilemmas o f Adult Daughters Caregivers in the Workforce. Sex 
4&(3/4), 167-173.
Max, W., Webber, P., & Fox, P. (1995). Alzheimer Disease: the unpaid burden o f caring.
Journal o f  Aging and Health, 7(2): 179-199.
McCabe, B., Sand, B., Yeaworth, R., & Nieveen, J. (1995). Availability and utilization of
service's o f Alzheimer's disease caregivers. Journal o f  Gerontological Nursing, 1,14-22.
McCarty, E.F. (1996). Caring for a parent with Alzheimer disease: process o f daughter caregiver 
sXxess. Journal o f  Advanced Nursing, 23: 792-803.
McFall, S., & Miller, B. (1992). Caregiving burden and nursing home admission of frail elderly 
^Qxsons. Journal o f  Gerontology, Social Sciences, 47, S73-S79.
McGartland Rubio, D. (2001). Comparing the well-being of post caregivers and non caregivers. 
American Journal o f  Alzheimer’s Disease and Other Dementias, 16(2), 97-101.
Meyers, J.K., Weissman, M.M., Tischler, G.L., et al. (1984). Six-month prevalence of 
psychiatric disorders in three communities. Arch Gen Psychitry, 41, 957.
Middleman, M.S., Ferris, S.H., Steinberg, G., Shulman, E., MacKell, J.A., Ambinder, A., &
Cohen, J. (1993). An intervention that delays institutionalization o f Alzheimer's disease 
patients: Treatment of spouse caregivers. The Gerontologist, 33, 730-740.
Miller, B. (1989). Adult children’s perception o f caregiver stress and satisfaction. Journal o f  
Applied Gerontology, 8, 275-293.
Miller, D.B., & Goldman, L. (1989). Perceptions o f Caregivers about Special Respite Services 
for the Elderly. The Gerontologist.
Miller, J.B.(1976). Toward a new psychology from women. Boston: Beacon Press.
Milligan, C. (2000). Bearing the burden: Towards a restructured geography o f caring. Area, 
32(1, 49-58.
143
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Mittelman, M.S., Ferris, S.H., Shulman, E, et al. (1996). A family intervention to delay nursing 
home placements of patients o f Alzheimer disease: A randomized controlled trial. 
Journal o f  the American Medical Association,276(21), 1725-1731.
Mittleman, M., Ferris, S., Shulman, G., & Levine, B. (1996). A family intervention to delay
nursing home placement o f patients with Alzheimer's disease: A randomized controlled 
trial. Journal o f  the American Medical Association, 276,1725-1731.
Mohide, E.A., Pringle, D.M., Streiner, D.L., Gilbert, J.R., Muir, G., & Tew, M. (1990). A 
randomized trial of family caregiver support in the home management o f dementia. 
Journal o f  the American Geriatrics Society, 38, 446-454.
Montgomery, R. (1988). Respite care: lessons from a controlled design study. Health Care 
Financing Review, Annual Supplement, 133-138.
Montgomery, R. J. V., & Kosloski, K. (1994). A longitudinal analysis o f nursing home 
placement for dependent elders cared for by spouses vs adult children. Journal o f  
Gerontology: Social Sciences, 49, S62-S74.
Moore, E.G., & Rosenberg, M.W. (2001). Canada’s elderly population: the challenges of 
diversity. The Canadian Geographer, 45(1), 145-150.
Morgan, D.G., Semchuk, K.M., Stewart, N.J., & D'Arcy, C. (2002). Rural families caring for a 
relative with dementia: barriers to use o f formal services. Social Science & Medicine, 35, 
1129-1142.
Moritz, D.J., Kasl, S.V., Berkinan, L.F. (1989). The health impact o f living with a cognitively 
impaired elderly spouse: Depressive symptoms and social functioning. Journal o f  
Gerontology, 44(1, 517-527.
Morrongiello, B.A., & Gottlieb, B.H. (2000). Self-Care Among Older Adults. Canadian Journal 
on Aging, 19(1), 32-57.
Morycz, R.K. (1985). Caregiving strain and the desire to institutionalize family members
with Alzheimer's disease: Possible predicators and model development. Research on 
Aging, 7: 329-361.
Motenko, A.K. (1989). The frustrations, gratifications, and well-being o f dementia caregivers. 
The Gerontologist, 29(2), 166-172.
Mullan, J. (1993). Barriers to the use o f formal services among Alzheimer's caregivers.
In S. Zarit, L. Pearlin & W. Schaie (Eds.). Caregiving Systems: Informal and 
Formal Helpers, pp.241-259. Hillsdale, NJ: Lawrence Erlbaum Associates, Publishers.
144
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Nankervis, J., Schofield, H., Herman, H. & Bloch, S. (1997). Home based assessment for family 
carers: A preventative strategy to identify and meet service needs. International Journal 
o f  Geriatric Psychiatry, 12, 193-201.
National Advisory Council on Aging (January 1986). Toward a community support policy fo r  
Canadians. A  discussion paper. Ottawa, Canada.
Neal, M.B., Ingersoll-Dayton, B., Emlen, A.C. (1993). Balancing work and caregiving fo r  
children, adults, and elders. Newbery Park, CA: Sage.
Nelson, C. H., & McPherson, D. H. (2004). Contextual Fluidity: An Emerging Practice Model 
fo r  Helping. Rural Social Work (In press.).
Nelson, C.H., & McPherson, D.H. (2003). Cultural diversity in social work practice: where are 
we now and what are the challenges in addressing issues o f injustice and oppression? In 
W. Shera (Ed.). Emerging perspectives on anti-oppressive practice (pp.81-98).
Nelson, C.H., Kelley, M.L., & McPherson, D.H. (1985). Rediscovering support in social work 
practice. Canadian Social Work Review, 231-248.
Neuman, W.L. (2003). Social Research Methods, Qualitative and Quantitative Approaches (5*'’ 
ed). Boston: Allyn & Bacon.
Nicoll, M., Ashworth, M., McNally, L., & Newman, S. (2002). Satisfaction with respite care: a 
pilot study. Health and Social Care in the Community, 10(6), 479-484.
Novak, M., & C. Guest (1989). Caregiver Response to Alzheimer's Disease. International 
Journal o f  Aging and Human Development, 28, 67-79.
O’Bryant, S.L., Straw, L.B., & Meddaugh, D.I. (1990). Contributions o f the caregiving role to 
women’s development. Sex Roles, 23, 645-658.
O'Donnell, B.F., Drachman, D.A., Barnes, H.J., Peterson, K.E., Swearer, J.M., & Lew,
R.A. (1992). Incontinence and troublesome behaviors predict institutionalization 
in dementia. Journal o f  Geriatric Psychiatry and Neurology, 5, 45-52.
Oktay, J., & Volland, P.J. (1990). Post-hospital support program for the frail elderly and 
their caregivers: A quasi-experimental evaluation. American Journal o f  Public 
Health, 80, 39-35.
Ontario Coalition of Senior Citizens’ Organizations. (2002). Verbal presentation to the
Commission on the Future o f Health Care in Canada, Sudbury Public Hearing, April 11, 
Sudbury, Ontario.
O’Rourke, N., & Tuokko, H. (2000). The Psychological and Physical Costs o f Caregiving: The 
Canadian Study o f Health and Aging. Journal o f  Applied Gerontology, 19(4), 389-404.
145
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Ory, M.G., Williams, T.F., & Emr, M, et al. (1985). Families, informal supports, and 
Alzheimer's Disease. Research on Aging, 7: 623-644.
Ostbye, T., & Crosse, E. (1994). Net economic costs of dementia in Canada. Canadian Medical 
Association Journal, 151(10), 1457-1464.
Otswald, S.K., Hepburn, K.W., Caron, W., Bums, T., & Mantell, R. (1999). Reducing Caregiver 
Burden; A Randomized Psychoeducational Intervention for Caregivers o f Persons with 
Dementia. The Gerontologist, 39(3), 299-309.
Padjen, M. (2003, April). The Forgotten Face o f  Alzheimer Disease: Early Onset Alzheimer
Disease. Alzheimer Society o f Canada, 25*'’ National Conference, Changes, Challenges, 
Choices, April 10-12,2003.
Petronela Juozapavicius, Kevin., Weber, Joseph, A. (January/February 2001). A reflective study 
o f Alzheimer's caregivers. American Journal o fA lzheimer's Disease and Other 
Dementias, 16(1), 11-20.
Pierce, G.R., Sarason, B.R., & Sarason, I.G. (1996). Handbook o f  social support and the family. 
New York: Plenum.
Poulshock, S.W. and Deimling, G.T., (1984). Families caring for elders in residence: issues in 
the measurement of burden. Journal o f  Gerontology, 39, 230-239.
Pruchno, R.A., Michaels, J.E., & Potashnik, S.L. (1990). Predictors o f institutionalization 
among Alzheimer disease victims with caregiving spouses. Journal o f  Gerontology: 
Social Sciences, 45, S259-S266.
Pruchno, R.A., & Resch, N.L. (1989). Aberrant behaviours and Alzheimer’s disease: mental
health effects on spouse caregivers. Journal o f  Gerontology: Social Sciences, 44, S177- 
S182.
Rankin, E.D., Haut, M.W., & Keefover, R.W. (1992). Clinical assessment of family caregivers in 
dementia. The Gerontologist, 32, 813-821.
Rapp, S.R., Shumaker, S., Schmidt, S., Naughton, M., & Anderson, R. (1998). Social
resourcefulness: its relationship to social support and wellbeing among caregivers of 
dementia victims. Aging & Mental Health, 2(1), 40-48.
Reinhard, S.C., Rosswurm, M.A., & Robinson, K.M. (2000). Policy recommendations for family 
caregiving support. Journal o f  Gerontological Nursing, 47-48.
Rice, D., Fox, P., Max, W., Webber, P., Lindeman, D., Hauch, W., & Sequia, E. (1993).
The economic burden of A.Z. care. Data Watch, Summer, 164-176.
146
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Roberts, J., Browne, G., & Denton, M. (1995). Assessment o f  respite needs: caregivers o f  
cognitively impaired persons living in the Halton Community. Final Report New 
Horizons Grant, System-Linked Research Unit, McMaster University,Hamilton, ON.
Roberts, J., Browne, G., Gafni, A., Varieur, M., Loney, P., & de Ruijter, M. (2000). Specialized 
Continuing Care Models For Persons with Dementia: A Systematic Review of the 
Research Literature. Canadian Journal on Aging, 19(1): 106-126.
Roberts, J., Browne, G., Milne, C., Spooner, L., Gafhi, A., Watt, S., Drummond-Young, M., 
Legris, J., LeClair, K., Beaumont, L., & Roberts, J. (1999). Problem solving 
counselling for caregivers o f cognitively impaired: Effective for whom? Nursing 
Research, 48(3): 263-272.
Romanow, R.J. (2002, November). Building on values: The future o f health care in Canada.
Final Report. Commission on the Future o f Health Care in Canada.
Rosenheimer, L., & Francis, E.M. (1992). Feasible without subsidy? Overnight respite for 
Alzheimer's. Journal o f  Gerontological Nursing, 18(4), 21-29.
Safran, D., Taira, D., Rogers, W., Kosinski, M., Ware, J., & Tarlov, A. (1998). Linking primary 
care performance to outcomes o f care. The Journal o f  Family Practice,
213-220.
Saperstein, A.R. (1988). Respite service: a service model. Paper presented at the annual meetings 
o f the Gerontological Society o f America, San Francisco, CA.
Sarason, B.R., Sarason, I.G., & Pierce, G.R. (Eds.). (1990). Social support: an interactional 
view. New York: Wiley.
Scharlach, A.E. (1994). Caregiving and employment: Competing or complementary roles? The 
Gerontologist, 34, 378-385.
Scharlach, A.E., & Boyd, S.L. (1989). Caregiving and employment: Results o f an employee 
survey. The Gerontologist 29, 382-387.
Schmall. V.L. (1984). It doesn't just happen: What makes a support group good? Generations, 9, 
64-67.
Schofield H, editor (1998). Family caregivers: disability, illness and ageing. Sydney:
Allen & Unwin.
Schulz, R., & Beach, S. (1999). Caregiving as a risk factor for mortality: Caregiver Health 
Effects Study. Jowrna/ o f  the American Medical Association, 282, 2215-2219.
147
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Schulz, R., O'Brien, A., Bookwala, J., & Fliessner, K. (1995). Psychiatric and physical 
morbidity effects of dementia caregivers: Prevalence correlates and causes. The 
Gerontologist, 25, 771-791.
Schulz, R., O’Brien, A., Czaja, S., Ory, M., Norris, R., Martire, L.M., Burgio, L., Gitlin, L., 
Coon, D.,Bums, Robert., Gallagher-Thompson, D., & Stephens, A. (2002).
Dementia Caregiver Intervention Research: Search of Clinical Significance. The 
Gerontologist, 42(5), 589-602.
Schulz, R., Visintainer, P., & Williamson, G.M. (1990). Psychiatric and physical morbidity 
effects of caregiving. Journal o f  Gerontology: Psychological Studies, 45, PI 81-PI 91.
Schulz, R., Williamson, G.M., Morycz, R., & Biegel, D.E. (1993). Changes in depression among 
men and women caring for an Alzheimer’s patient (pp. 119-140). In S.H. Zarit, L.I. 
Pearlin, & K. Warner Schaie (Eds.). Caregiving systems: Formal and Informal Helpers. 
Lawrence Earlbaum :Hillsdale, NJ
Shaw, W.S., Patterson, T.L., Semple, S.J., Ho, S., Irwin, M.R., Hanger, R.L., & Grant, I. (1997). 
Longitudinal analysis o f multiple indicators o f health decline among 
spousdX csregwets. Annals o f  Behavioral Medicine, 19, 101-109.
Shumaker, S.A., & Brownell, A. (1984). Toward a theory o f social support: closing conceptual 
Journal o f  Social Issues, 40, 11-36.
Silverman, A.G., Kahn, B.H., & Anderson, G. (1977). A model for working with 
multigenerational families. Ca5Cwor̂ , 58, 131-135.
Sisk, R.J. (2000). Caregiver burden and health promotion. International Journal o f  Nursing 
Studies, 37, 37-43.
Skaff, M.M., & Pearlin, L.I. (1992). Caregiving: Role engulfment and the loss of self. The 
Gerontologist, 32, 656-664.
Small, G.W., Rabins, P.V., Barry, P.P., et al. (1997). Diagnosis and treatment of Alzheimer 
disease and related disorders: Consensus statement o f the American Association for 
Geriatric Psychiatry, the Alzheimer’s Assoiciation and the American Geriatrics Society. 
Journal o f  the American Medical Association, 278, 1363-1371.
Smith, G., Smith, M., & Toseland, R. (1991). Problems identified by family caregivers in 
counseling. The Gerontologist, 31(1), 15-22.
Smyer, Tish., & Chang, Betty, L. (1999). A typology of consumers of institutional respite 
care. Clincial_Nursing Research, 891, 26-50.
Statistics Canada (2003). Population projections fo r  2001, 2006, 2011, 2016, 2021, and 2026. 
Retrieved February 5,2004, from http ://www. statcan.ca/english/pgdb/demo23 a.htm
148
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Statistics Canada (1999). Health among older adults. Health Reports Special Issue, 11(13), 47 
-61.
Steuer, J., & Clark, E. (1981). Family support groups within a research project on dementia. 
Clinical Gerontologist, 1: 87-95.
Stoller, E., & Earl, L. (1983). Help with activities of everyday life: Sources o f support for the 
noninstitutionalized elderly. The Gerontologist, 23, 64-70.
Stoller, E.P. (1993). Gender and the organization of lay health care: A socialist-feminist 
perspective. Journal o f  Aging Studies, 7(2), 151-170.
Stoller, E.P., & Pugliesi, K.L. (1989). Other roles of caregivers: Competing responsibilities or - 
supportive resources. Journal o f  Gerontology: Social Sciences, 44, S231-S238.
Stone, R., Cafferata, G., & Sangl, J. (1987). Caregivers o f the frail elderly: A national profile. 
The Gerontologist, 27, 616-626.
Strang, V. (2001). Family caregiver respite and leisure: a feminist perspective. Scandinavian 
Journal o f  Caring Sciences, 15(1), 74-81.
Strang, Vicki, R., & Haughey, Margaret. (1999). Respite- A Coping Strategy for Family 
Caregivers. Western Journal o f  Nursing Research, 21(4), 450-471.
Stuckey, J.C., Neundorfer, M.M., & Smyth, K.A. (1996). Burden and well-being: The same coin 
or different currency? The Gerontologist, 36, 686-693.
Swearer, J.M. (1994). Behavioral disturbances in dementia. In J.C. Morris (Ed.). Handbook of 
dementing illnesses. New York: Marcel Dekker.
Teri, L., Rabins, P., Whitehouse, P., Berg, L., Reisberg, B., Sunderland, T., Eichelman, B., & 
Phelps,C. (1992). Management o f behavior disturbance in Alzheimer disease: Current 
knowledge and future directions. Alzheimer Disease and Associated Disorders, 6(2), 77- 
88 .
Theis, S.L., Moss, J.H., & Pearson, M.A. (1994). Respite for caregivers: An evaluation study. 
Journal o f  Community Health Nursing, 11(1), 31-44.
Townsend, D., Kosloski, K. (2002). Factors related to Client Satisfaction with Community 
Based Respite Services. Home Health Care Services Quarterly, 21(3/4), 89-106.
Toseland, R.W., Labrecque, M.S., Goebel, S.T., & Whitney, M.H. (1992). An evaluation of a 
group program for spouses o f fi-ail elderly veterans. The Gerontologist, 32, 382-390.
Toseland, R.W., & Rossiter, C.M. (1989). Group interventions to support family caregivers: A 
review and analysis. The Gerontologist, 29, 438-448.
149
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Toseland, R.W., Rossiter, C.M., & Labrecque, M.S. (1989). The Effectiveness of a Peer-Led and 
Professionally Led Groups to Support Family Caregivers. The Gerontologist, 29(4), 465- 
471.
Vetter, P., Steiner, O., Kraus, S., Moises, H., Kropp, P., Moller, W.D. & Kohler, O. (1998).
Factors affecting the utilization of homecare support by caregiving relatives o f Alzheimer 
patients. Dementia Geriatric and Cognitive Disorders, P, 111-116.
Vitaliano, P.P. (1997). Physiological and physical concomitants o f caregiving: Introduction to 
special issue. Annals o f  Behavioral Medicine, 19, 75-77.
Vitaliano, P.P., Russo,J., Young, H.M., Becker, J., & Maiuro, R.D. (1991). The Screen for 
Caregiver Burden. The Gerontologist, 31, 76-83.
Weissert, W.G., Elston, J.M., Bolde, E.J, et al. (1990). Adult day care: Findings from  a national 
survey. Baltimore MD: Johns Hopkins University Press.
Wenger, G.C., Scott, A., & Seddon, D. (2002). The experiences o f caring for older people with 
dementia in a rural area: using services.
Wilcox, S., & King, A.C. (1999). Sleep complaints in older women who are family
caregivers. Journal o f  Gerontology: Psychological Sciences, 54B(3), P189-P198.
Wilder, D.E., Teresi, J.A., & Bennett, R.G. (1983). Family burden and dementia. In R. Mayeux 
and W.G. Rosen (Eds.). The Dementias. Raven Press, New York.
Winogrond, I.R., Fisk, A.A., Kirsling, R.A., & Keyes, B. (1987). The relationship o f caregiver 
burden and morale to Alzheimer's disease patient function in a therapeutic setting. The 
Gerontologist,27, 336-339.
Winslow, B.W. (2003). Family Caregivers' Experiences with Community Services: A 
Qualitative Analysis. Public Health Nursing, 20(5): 341-348.
Winslow, B.W. (1997). Effects o f  formal supports on stress outcomes in family
caregivers of Alzheimer's patients. Research in Nursing and Health, 20, 27-37.
Worchel, S. (1978). Reducing crowding without increasing space: Some applications o f an 
attributional theory o f crowding. Jowrna/o/Popw/afron, 1, 216-230.
Worchel, S., & Teddlie, C. (1976). The experience of crowding: A two factor theory. Journal o f  
Personality and Social Psychology, 34, 30-40.
Wright, L., (1993). Alzheimer's Disease and Marriage. Newbury Park: Sage 
Publications.
150
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Wright, L.K. (1997). Health behavior of caregivers. In D.S. Gochman (Ed.). Handbook o f  
health behavior research: Vol. 3. Demography, development, and diversity (pp. 
267-284). New York:Plenum.
Wright, L.K., Clipp, E.G., & George, L.K. (1993). Health consequences o f caregiver 
stress. Medical Exercise and Nutritional Health, 2, 181-195.
Wykle, M.L. (1994). The physical and mental health of women caregivers o f older 
üàvilXs. Journal o f  Psychosocial Nursing, 32(3), 41-42.
Zanetti, O., Frisoni, G.B., Bianchetti, A., Tamanza, G., Cigoli, V., & Trabucchi, M.
(1997). Depressive symptoms o f Alzheimer caregivers are mainly due to personal 
rather than patient factors. International Journal o f  Geriatric Psychiatry, 13, 358- 
367.
Zanetti, O., Metitieri, T., Bianchetti, A., & Trabucchi, M. (1998). Effectiveness o f an 
educational program for demented person's relatives. Archives o f  Gerontology 
and Geriatrics, 6, 531-538.
Zarit, S., Anthony, C., & Boutselis, M. (1987). Interventions with caregivers of dementia 
patients: Comparison o f two approaches. Pscyhology and Aging, 2: 225-234.
Zarit, S.H., Gaugler, J.E., & Jarrott, S.E. (1999). Useful services for families: research, findings 
and directions. International Journal o f  Geriatric Psychiatry, 14, 165-181.
Zarit, S., Orr, N., & Zarit, J. (1985). The hidden victims o f  Alzheimer disease: Families under 
stress. New York: New York University Press.
Zarit, S.H., & Pearlin, L.I. (1993). Family caregiving: integrating informal and formal systems 
for care. In S.H. Zarit, L.I. Pearlin, & K.W. Schaie (Eds.). Caregiving systems: form al 
and informal helpers. Hillsdale, NJ: Erlbaum.
Zarit, S.H., Stephens, M.A.P., Townsend, A., Greene, R. (1995). Stress reduction fo r  fam ily  
caregivers: Effects o f  adult day care use. In Press.
Zarit, S.H., Todd, P.A., & Zarit, J.M. (1986). Subjective burden o f  husbands and wives as 
caregivers: A longitudinal study. The Gerontologist, 26,260-266.
Zarit, S.H., & Whitlatch, C.J. (1992). Institutional Placement: Phases o f the Transition. The 
Gerontologist, 32(5), 665-672.
151
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
APPENDIX A
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Lakehead
U N I V E R S I T Y  OfficeofRe
Tel. (807) 3 4 3  
Fox (807) 3 4 6
5 February 2 0 0 3
Ms. Kerry Kuluski 
D epartm ent of Social Work 
Lakehead University 
Thunder Bay, ON
Dear Ms. Kuluski:
Based on the  recom m endation of the R esearch Ethics Board, I am p leased  to  grant 
ethical approval to  your research project entitled, "ALZHEIMER DISEASE 
CAREGIVERS: RESPITE USE AND STRESS LEVELS AMONG CAREGIVERS WHO ARE 
SUPPORT GROUP MEMBERS."
The Research Ethics Board requests an annual progress report and a final report for 
your study in order to  be in com pliance with Tri-Council Guidelines. This annual 
review  will help ensure th a t the highest ethical and scientific standards are applied to  
stud ies being undertaken a t Lakehead University.
Com pleted reports m ay be forw arded to:
Lynn Stokaluk 
Office of Research 
Lakehead University 
955  Oliver Road 
Thunder Bay, ON P7B 5E1 
FAX: 8 0 7 -3 4 6 -7 7 4 9
Best w ishes for a successfu l research project.
Sincerely,
Dr. Lori Cham bers
Acting Chair, Research Ethics Board
/Ims
Encl.
cc: Dr. C. Nelson, Supervisor
152
9 5 5  Oliver Road Thunder Boy O nta r io  C a n a d a  P7B 5E1 v^ww.lakeheodu.co
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
APPENDIX B
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Lakehead
U N I V E R S I T Y  School of Social Work
Tel. (807) 3 4 3 -8 5 7 6  
Fox (807) 3 4 6 -7 7 2 7
Dear Participant,
Thank-you for volunteering to participate in a study involving respite services and caregiver 
stress. I am a graduate student in the School of Social Work at Lakehead University. My 
graduate advisor for this thesis study is Dr. Connie Nelson. The title of the study is; Alzheimer 
Disease Caregivers: Respite Use and Stress Levels among Support Group Members.
As a caregiver who is involved in a support group, you may or may not choose to use respite 
services for various reasons (for example, lack of availability). Respite services are available in 
some communities to provide a break for you as a caregiver. For more information on respite 
care, a definition is provided on the following page.
The purpose of this sun/ey is to see if there is a connection between use of respite care and the 
degree of stress that you may experience as a caregiver who is also involved in a support 
group. This study is significant, as it will provide the Alzheimer Societies across Northern 
Ontario information to help them better serve those who need help dealing with the impacts of 
caring of those who have Alzheimer Disease. Additionally, the information from these surveys 
will outline barriers that may exist for you as a caregiver living in Northern Ontario. As a result, 
these surveys may help to build changes in policy that will cater to your needs as caregivers.
In order to carry out this study, I ask that you fill out the following survey, which will take 
approximately 20 minutes of your time. All answers are acceptable and will be valued. No 
names are needed on the survey and all answers are strictly confidential. As you are a 
volunteer in this research you have the right to withdraw at any time. If you choose to withdraw 
this will have no effect on the services that you are currently receiving or will receive in the 
future. All surveys will be kept in secure storage in the School of Social Work at Lakehead 
University for seven years.
Caregiving can t>e very stressful and answering this survey may be the catalyst for rethinking 
some of these challenging aspects of caregiving. As a result, if any questions or concerns arise 
involving this study feel free to contact myself using the information provided below or speak to 
your local Alzheimer Society support group leader. The benefit of your participation will help to 
create a deeper understanding of your unique experience as a caregiver and will add to existing 
knowledge around the needs and experiences of Alzheimer caregivers.
A copy of the results will t)e made available at your local Alzheimer Society chapter by May 
2004. If you have any questions or concerns feel free to e-mail or contact myself directly at the 
School of Social Work at Lakehead University at the number listed below.
Thank you for your time and cooperation.
Sincerely,
Kerry Kuluski 
e-mail:
phone: (807) 343-8576
 ______________      153
9 5 5  Oliver Rood T hunder  Boy O n ta r io  C a n a d a  P7B 5E1 www.lakeheadu.ca
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
APPENDIX C
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
"Alzheimer Disease Caregivers: Respite Use and Stress 
Levels among Support Group Members" 
SURVEY
DIRECTIONS:
P lease answer the following questions a s  honestly as  possible. Place an X or a 
checkmark in the appropriate box. Som e questions may require you to provide an 
answer. Lines will be provided for you to answ er in sentences or a few words.
DEFINITIONS:
The following definitions may help you understand the terms "caregiver stress" and 
"respite services." P lease read the following definitions before filling out this survey.
R esp ite  Services; A program for care receivers with the aim of providing a break for 
the caregiver. There are generally three types of respite care:
1. Adult day programs- care is provided outside of the home in a facility in which m eals 
and activities are provided in a supervised environment during the day.
2. In home respite- care is provided in the home during the day or at night.
3. Institutional respite- the care receiver is admitted into a long-term care facility for a 
specific time period (ie: a few days to a few months) with plans to return home.
C aregiver S tress: Caregiving is a unique experience for all. As a result, all caregivers 
may interpret caregiver s tress  differently. However, a s  identified in the 1999 Alzheimer 
A w areness Campaign the ten signs of caregiver stress are a s  follows:
1. Denial that the person has the d isease
2. Anger at the person with the d isease and others
3. Emotional sensitivity
4. Social withdrawal
5. Depression
6. Lack of sleep
7. Lack of concentration
8. Exhaustion
9. Anxiety
10. An increase in health problems
♦ Any or all of these signs may be experienced
154
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
1. Gender
□  Male
□  Female
2. Age___
3. Marital Status
□  Single
□  Married
□  Divorced 
D Widowed
□  Other (please specify)___
4. Employment Status
□  Full Time
□  Part Time
□  Retired
□  Not employed at this time
□  Other (please specify)___
5. How long have you been attending this support group?.
155
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
6. What is your relationship with the care recipient? In other words, the person 
you are providing care for Is your...
□  Mother
□  Father
□  Wife
□  Husband
□  Sister
□  Brother
□  Friend
□  Other (please specify)____________
7. Check which area applies to you. "I am a caregiver for someone who has been 
diagnosed... "
□  one year ago or less
□  over one year and less than five years ago
□  five years ago or more
8. Do you live In the same household as the person you are caring for?
□  Yes
□  No
156
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
9. The following Information has been taken from resources provided by the 
Alzheimer Society of Canada. Using the Information provided below, Indicate 
which stage of the disease the person you are caring for falls Into.
Early Stage
♦ Mild forgetfulness
♦ Poor concentration
♦ Memory problems becom e obvious in conversation
♦ In conversation, person has difficulty finding the right words and may be repetitive
♦ Difficulty learning new things
♦ Withdrawal from usual activities
♦ Mild coordination problems
♦ Mood changes (ie: depression)
Middle/Moderate Stage
♦ Inability to recognize family and friends
♦ Disorientation of time and place
♦ Assistance needed with activities of daily living (bathing, dressing, using the 
washroom)
♦ R estlessness (pacing, wandering)
♦ C hanges in appetite and sleep patterns
♦ Continued mood changes (anxiety, depression, anger, suspiciousness, etc)
Late Stage
♦ Loss of ability to communicate, remember, or function
♦ Severe speaking difficulties (may completely lose ability to speak)
♦ Unable to dress, bathe, etc.
♦ May becom e immobile (ie: bedridden)
♦ Severely disoriented
157
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
The person that you care for is in:
□  the early s tage of Alzheimer D isease
□  the middle/moderate stage  of Alzheimer D isease
□  the late stage of Alzheimer D isease
10. Respite Services can be used by someone who is experiencing:
□  the early s tages of Alzheimer D isease
□  middle-late s tages of Alzheimer D isease
□  all of the above
11. Check off what types of resources (if any) besides this support group, that 
you have used.
□  Respite Services
□  Homemaking Services (ie; cleaning and/or nursing care)
□  Regular assistance from friends or other family m em bers (2 or more times a 
week)
□  Other (please specify in the space  provided below)
158
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
IF YOU HAVE USED RESPITE SERVICES PLEASE ANSWER THE FOLLOWING. IF 
YOU HAVE NOT, PLEASE SKIP TO QUESTION 12.
a. The following chart examines levels of use for different types of respite care 
(adult day programs, in home respite, and institutional respite). Please rate your 
level of satisfaction for the respite program(s) you have used:
Respite Program Level of Satisfaction
Adult Day Program Very Unsatisfied Undecided Satisfied Very 
Unsatisfied Satisfied
1 2 3 4 5
In Home Respite Very Unsatisfied Undecided Satisfied Very 
Unsatisfied Satisfied
1 2 3 4 5
Institutional Respite Very Unsatisfied Undecided Satisfied Very 
Unsatisfied Satisfied
1 2 3 4 5
Other (please Very Unsatisfied Undecided Satisfied Very 
soecifv) Unsatisfied Satisfied1 2 3 4 5
b. If you are currently using respite, how often do you seek these services? 
Please check the one that best describes your level of use:
□  On a daily basis
□  On a  weekly basis (1-6 days a week)
□  On a monthly basis (one or more times a month)
□  On an yearly basis (one or more times a year)
□  Other, p lease explain in the space  provided below;
159
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
c. If you are no longer using respite services, please explain why in the space 
provided below.
d. Please indicate what you liked or disliked about the service(s) in the space 
provided below.
Please go to question 13
160
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
12. Please check off ALL of the appropriate answers: "I chose not to use respite 
services because of... "
□  Financial limitations
□  Limited or no information about respite services (unaware of respite 
services).
□  No interest in using respite services
□  Lack of transportation to respite service
□  Respite services w ere not available in my home community
□  Other (Please specify in the space provided below)
161
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
13. How did you hear about the availability of respite services?
□  A support group (such as  the one you are attending)
□  Physician or other medical personnel
□  A friend, family member, neighbour, etc.
□  I w as unaware of the existence of respite care
□  Other (please specify in the space provided below)
162
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
14. The chart below has a list of different activities (in the left-hand column). Use 
the scales provided (in the middle and right-hand column) to indicate how often 
you took part in the activities before you became a caregiver and how often you 
presently take part in the following activities.
Before 1 became an Since 1 have been an 
Activity Alzheimer Caregiver 1 Alzheimer Caregiver 
would... 1...
Visit Friends Never Sometimes Often Never Sometimes Often
1 2 3 1 2 3
Spend time with other Never Sometimes Often Never Sometimes Often
family m em bers 1 2 3 1 2 3
Run errands Never Sometimes Often Never Sometimes Often
1 2 3 1 2 3
Watch television Never Sometimes Often Never Sometimes Often
1 2 3 1 2 3
Work longer hours (outside Never Sometimes Often Never Sometimes Often
of the home) 1 2 3 1 2 3
Complete household tasks Never Sometimes Often Never Sometimes Often
1 2 3 1 2 3
Partake in self-care Never Sometimes Often Never Sometimes Often
activities (read, nap, etc) 1 2 3 1 2 3
Exercise (ie: walk, take a Never Sometimes Often Never Sometimes Often
yoga class, run, etc) 1 2 3 1 2 3
163
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
15. To what degree do you agree/disagree with this statement?
"Respite services tend to be more bénéficiai if used before an emergency/crisis 
situation arises, in other words, before the caregiver reaches burnout "
□  Strongly Agree
□  Agree
□  Disagree
□  Strongly Disagree
16. Please rate the following question as it applies to you: 7  have difficulty 
asking for heip in a situation where i fee/ stressed. "
□  Strongly Agree
□  Agree
□  Disagree
□  Strongly Disagree
17. In the last month, how often have you felt that you were unable to control the 
important things in your life?
Never Almost Never Sometimes Fairly Often Very Often
0 1 2  3 4
18. In the last month, how often have you felt confident about your ability to 
handle your personal problems?
Never Almost Never Sometimes Fairly Often Very Often
0 1 2  3 4
164
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
19. In the last month, how often have you felt that things were going your way?
Never Almost Never Sometimes Fairly Often Very Often
0 1 2 3 4
20. In the last month, how often have you felt difficulties were piling so high that 
you could not Overcome them?
Never Almost Never Sometimes Fairly Often Very Often
0 1 2 3 4
21. Here is a statement regarding caregiver stress: "The more resources a 
caregiver makes use of the less stress he or she will experience. "
□  Agree
□  Disagree
□  No Opinion
22. As a caregiver of someone experiencing Alzheimer Disease what types of 
services would you like to see in the future?
165
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
23. Rate your overall experience as a caregiver so far:
□  Very stressful
□  Stressful
□  Unstressful
□  Very unstressful
24. If you answered unstressful or very unstressful, please skip to question 25. If 
not please answer the following:
Stress experienced while caregiving may be different for all caregivers. To value 
your unique experience, please describe what may have contributed to your 
stress in a few words or sentences below.
25. The following is a question about caregiver stress. You may not have an 
opinion on this statement, if so indicate below. Here is the statement; "Caregiver 
stress tends to increase as the health of the care receiver decreases. "
□  Agree
□  Disagree
□  No Opinion
166
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
26. In a few sentences, how would you describe your experience as a caregiver?
This is the end of the survey! Thank-you for your time and cooperation!
167
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
APPENDIX D
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
John D. and Catherine T. MacArthur 
R esearch N etwork on S ocioecon om ic S tatu s and
Health
Perceived Stress Scale- 4 Item
Instructions: The questions in this scale ask you about your 
feelings and thoughts during the last month. In each case, 
please indicate with a check how often you felt or thought a 
certain way.
1. In the last month, how often have you felt that you were 
unable to control the important things in your life?
 0=never 1=almost never 2=som etimes__ 3=fairly
often 4=very often
2. In the last month, how often have you felt confident about 
your ability to handle your personal problems?
 0=never 1=almost never 2=som etim es__ 3=fairly
often 4=very often
3. In the last month, how often have you felt that things were 
going your way?
 0=never 1=almost never 2=som etimes 3=fairly
often 4=very often
4. In the last month, how often have you felt difficulties were 
piling up so high that you could not overcome them?
 0=never 1=almost never 2=som etimes 3=fairly
often 4=very often
This scale can be found in the following articles:
Cohen, S., Kamarck, T., Mermelstein, R. (1983). A global
ttp://www.mac ses.ucsf.edu/research/PsychosociaI/notebook/PSS4.html
168
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
measure of perceived stress. Journal of Health and Social 
Behavior, 24, 385-396.
Cohen, S., & Williamson, G. (1988). Perceived stress in a 
probability sample of the United States. In S. Spacapam & S. 
Oskamp (Eds.), The social psychology of health: Claremont 
Symposium on applied social psychology. Newbury Park, CA; 
Sage.
Perceived Stress Scale Scoring
PSS-4 scores are obtained by reverse coding the positive 
items, e.g., 0=4, 1=3, 2=2, etc. and then summing across all 4 
items. Items 2 and 3 are the positively stated items.
The PSS was designed for use with community samples with 
at least a junior high school education. The items are easy to 
understand and the response alternatives are simple to 
grasp. Moreover, as noted above, the questions are quite 
general in nature and hence relatively free of content specific 
to any sub population group. The data reported in the article 
are from somewhat restricted samples, in that they are 
younger, more educated and contain fewer minority members 
than the general population. In light of the generality of scale 
content and simplicity of language and response alternatives, 
we feel that data from representative samples of the general 
population would not differ significantly from those reported 
below.
Conditions of Scale Use
Permission for use of the scale is not necessary when use is 
for academic reseach or educational purposes.
If you need written permission, please write the letter with a 
line for signature, along with a self addressed, stamped 
envelope,and send to:
Laurie Nelson 
Department of Psychology 
Carnegie Mellon University 
5000 Forbes Avenue
ttp://www.macses.ucsf.edu/research/Psychosocial/notebook/PSS4.html jgç
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Pittsburgh, PA 15213
or email your request with your complete address included: 
lanelson@andrew.cmu. edu
(Close this window to return to Measures o f Psychological 
Stress.)
C o p y r ig h t ©  
1999 UCSF
C on ta c t: J u d ith  
S te w a rt 
R ev ise d  17 
F e b ru a n  2000
ttp://www.macses.ucsf.edu/research/Psychosocial/notebook/PSS4.html 170
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
APPENDIX E
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Demographic Information of Caregivers
Caregiver Age and Marital Status Employment Does care 
Gender and Status receiver live 
Relationship to with caregiver?
Care Receiver
63 Married Retired No (care 
receiver lives in 
1 Female Caring for long-term care)
mother
62 Married Retired No (care 
receiver lives in 
Female Caring for long-term care)
2 mother
62 Married Retired Yes
3 Female Caring for 
mother
75 Married Retired No
4
Male Caring for wife
64 Married Part time No
5 Male Caring for 
mother
? Married Part time No
6 Male Caring for 
father
66 Married Retired Yes
7 Female Caring for 
husband
41 Single Full time Yes
8 Male Caring for 
father
? Married Retired No (care 
receiver lives in 
9 Female Caring for long-term care)
husband
171
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
62 Divorced Not employed No (care 
at this time receiver lives 
10 Female Caring for by self)
mother
75 Married Retired Yes
11
Male Caring for wife
78 Married Retired Yes
12 Female Caring for 
husband
77 Married Retired Yes
13 Male Caring for 
husband
76 Married Retired Yes
14 Female Caring for 
husband
63 Widowed Retired No (care 
receiver 
15 Female Was caring for deceased)
mother
56 Divorced Other (Rental No (care 
Landlord) receiver 
16 Female Was caring for deceased)
mother
44 Married Other (Casual No (care 
hoping for full receiver lives in 
17 Male Caring for time) long-term care)
mother
67 Married Retired No (care 
receiver lives in 
18 Female Caring for long-term care)
husband
84 Widowed Retired No (care 
receiver 
19 Male Was caring for deceased)
wife
47 Married Full time No (care 
receiver lives in 
20 Female Caring for long-term care)
father
172
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
76 Married Retired No (care 
receiver lives in 
21 Female Caring for long-term care)
husband
62 Married Retired No (care 
receiver lives in 
22 Female Caring for long-term care)
mother
55 Married Full time No (care 
receiver lives in 
23 Female Caring for long-term care)
mother
55 Married Full time No (care 
24 receiver lives in 
Male Caring for long-term care)
father
66 Married Retired No
25 Male Caring for 
mother-in-law
56 Married Full time Living
26 arrangements
Female ? unknown
58 Widowed Part time No (care 
receiver 
27 Female Was caring for deceased)
mother
77 Widowed Retired No (caregiver 
and care 
28 Male Caring for receiver live 
grandparent separate)
47 Married Not employed No (care 
29 at this time receiver lives in 
Female Caring for long-term care)
father
70 Married Retired Yes
30 Male Caring for 
husband
74 Married Retired Yes
31 Female Caring for 
Husband
173
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
70 Married Retired Yes
32 Female Caring for 
husband
? Married Retired Yes
33 Female Caring for 
husband
174
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
APPENDIX F
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Open Ended Responses 
Question:
‘‘As a caregiver experiencing Alzheimer Disease, what types o f services would you like to see 
in the future?"
Caregiver Caregiver Response
2
“Educate people-doctors, nurses. People 
suffering from Alzheimer’s have feelings-they 
should not be treated like dogs. A bit o f 
patience and compassion goes a long vyay.”
5
“More staff in homes for personal care.”
8
“Increased availability o f respite services.”
9
“I am very satisfied that what is out there is 
adequate. The only problem is that too many 
caregivers either do not or cannot (due to 
pressure from the one being cared for) make 
use o f the available services.”
10
“Transportation for caregivers and care 
recipients for shopping, doctors appointments, 
etc., for caregivers with no vehicles.”
14
“Increase: Number o f beds/openings available; 
wider choice o f facilities. More nurses- 
gerontology training.”
15
“An overnight day care, housekeeper (part- 
time).
16
“A vigorous attempt to provide education 
about this disease to family physicians, also to 
the general public. Social get togethers for 
those with this disease and their caregivers-for 
interaction and sharing.”
175
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
17
“More volunteers to support Alzheimer people 
in the community. Or bring shops to 
institutionalized people. An educational link 
where caregivers can leave a legacy of 
caregiving situations so that others may use the 
information and grow...”
19
“More in-home care. More intense doctor care 
and input.”
20
“One on one care for Alzheimer patient, better 
physician space for personal visits, cheaper 
subsidized nursing home space, private 
rooms.”
21
“I would like to see the staff in old age homes 
have more time and affection and personality. 
They become very childish and need soft 
talking to. The people are too busy and not 
enough o f them to spend times with the 
patients and have more patience with them.”
22
“The availability of respite care in our area is 
inadequate and not readily available. The need 
for care is an issue. Availability o f respite 
caregivers willing to spend time with the 
resident when caregivers need a day to relax”.
23
“More time for personal care workers in home 
to spend time with resident- not just for needs 
(feeding/changing/bathing) but social part of 
day. Even 1 hour a day in intervals just to 
spend with resident- talking/walking?”
24
“More activities in long term care facilities, 
better area’s for family gatherings at long-term 
care facilities, more staffing, possibly more 
government funding.”
26
“Knowledgeable and informed source for 
everyday coping, and future planning, ie, 
placement is required and what to expect. 
Monthly updates on health both mental and 
physical o f loved one, what resources are 
available besides busy doctors.”
176
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
27
“Improved (more hours) respite hours, 
volunteer companion, short-term respite beds.”
29
“Respite services in nursing home, visiting on 
a regular basis (3 to 4 times a week sometimes 
difficult). If you know a respite person would 
visit it would give you a day off.”
30
“More meetings or gatherings for caregivers.”
32
“More government money for Respite.”
Question:
“Stress experienced while caregiving may be differentf o r  all caregivers. To value your 
unique experience, please describe what may have contributed to your stress in a few  words or 
sentences below. ”
Caregiver Caregiver Response
1
“Just the fact that mom does not know me or 
what I do for her. Can’t acknowledge me at 
all. It’s just unfair for such a loving and caring 
women to end up like a vegetable, and I can’t 
do anything about it.”
2
“Seeing my mother deteriorate and not being 
able to do anything about it.”
8
“Lack o f sleep is the big one.”
9
“Mostly lack of sleep due to worrying about 
what my husband was doing.”
10
“Legal hassles with my brother wanting to sell 
my mothers house when she is saying no to. 
Lot’s o f running around trying to straighten 
things out and work for my m om’s best 
interest. Exhaustion.”
11
“Denial from my husband, irritability, anger, 
repetition, no help from family or friends so 
far. I try to manage on my own.”
177
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
12
“Family and friends seem to shy away from 
people with dementia. When they do come 
around, which my husband really enjoys, he is 
at his very best. Then they don’t understand 
how I feel so stressed.”
15
“Learning to lie to my mother. I had no one on 
the family to help or hinder, ie, I was an only 
child.”
17
“You try harder to work plus be a caregiver. 
You try to think for the individual, you are so 
busy thinking ‘what i f  that your mind does not 
rest. Guilt sets in when the client blames you 
fro placement. You keep going due to family 
obligations, not eating, nor sleeping properly 
combines to cause ‘crash and bum ’ effect.
You do not find outlets for your crisis i.e., 
exercise, counseling, instead you hide within. 
Resistance to admit that you need to take a step 
and seek a little help puts you at a crisis.”
19
“Continued complete care at all hours day and 
night, causing lack o f rest and physical stress.”
20
“Having to take over family business, father 
has difficulties coming to terms with 
understanding his condition (organic brain 
disease), very little family 
participation/assistance, unattractive nursing 
home/physical setting cold and sterile.”
21
“I find it hard when I visit my husband and I 
find he looks so pitiful and would need more 
compassion from workers and more activity. 
There is not enough things for them to do. 
More music, more woodworking and bands to 
play music. I’m very sure if volunteers would 
come and play cassette tapes in the afternoon 
in the dining area people would all be out 
there. They need to be entertained.
178
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
22
“Mom enjoyed independent living with help 
until 90 years old. Just seeing our mother in 
this state and stage o f her life is very stressful. 
She has been a very good mom and having had 
to place her in a facility was extremely 
stressful. Although unaware o f her 
surroundings, most o f the time she recognizes 
her children but sometimes remembers use 
younger than we are.”
23
“Needing to be there, visit more often, guilt 
that I cannot look after her at home.”
26
“The shock and upset o f watching the once 
alert, loving, intelligent person losing mental 
and physical ftmctions-and the feeling of 
helplessness I feel when I was once able to do 
so much to ease this terrible journey we are 
both experiencing.”
27
“24 hour care and supervision need for creative 
ideas as symptoms and behavior change, 
managing challenging behavior, in the 
advanced stages resistance to care and the 
physical strength needed to care for your loved 
one. The early grieving fro a loved one who is 
slowly wasting away. The lack o f personal 
life.”
28
“I worry about what the future will bring. I am 
doing fine so far, but I wonder if the demands 
fi-om my own family become greater, will I 
still be able to do a good job.”
29
“My highest stress level vyith my father in a 
home is upon visiting, question he always asks 
is “Why and I here and when am I going 
home?”
31
“Repetitious questions-argumentative-always 
wants me around, mood swings.”
32
“Lack of sleep.”
179
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Question:
“In a few  sentences, how would you describe your experience as a caregiver?”
Caregiver Caregiver Response
2
“It is very stressful to see your loved one ‘die 
twice.’ However you must learn to laugh at 
certain happenings and enjoy and cherish every 
moment-every smile.”
3
“Each day represents a new outlook and 
approach to the care you need to give, and care 
you need to give yourself. Caregiving teaches 
priorities, to appreciate the ‘little things’- like a 
hearty laugh with the Alzheimer person, family 
member friend or stranger! ! Of course, there 
are moments one would like to walk away but 
it is like a job, it gets done. Opportunity to do 
‘on the spur of the moment’ activities are 
limited.”
5
“A real eye opener to the great services 
available.”
8
“Difficult but necessary.”
9
“The hardest and most frustrating days o f  my 
life. When my husband was home. Now he is 
in the hospital, very saddening and depressing 
to see him in such a horrible state, with no 
quality o f life.”
10
“I have the Lord in my life. Without this I 
don’t know what I ’d do. It’s a very lonely 
place; others don’t seem to want to help or 
even care other than short social visits. Very 
exhausting.”
11
“The experience has been the most difficult 
thing that I have had to handle. I feel very 
lonely at times. This disease has changed our 
lives in many ways and I feel this will only get 
worse.”
180
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
12
“I find it hard to do everything even to making 
all the decisions. I feel that he should be able 
to do a little bit and try encouraging him to do 
so. All he really wants to do is sit or lay in bed 
most o f the time sleeping. If I ask him to do 
something he says he can’t or doesn’t feel 
well.”
15
“Awful. I had to watch her die day by day for 
too many years. Just before mom dies a 
woman told me if  1 had taken better care o f my 
mother ‘she wouldn’t be dying’ with 
Alzheimer’s if  I had been a better caregiver.”
16
“ A journey that my mother and 1 experienced 
together where we faced anger, emotional 
sensitivity, exhaustion, anxiety and more 
important love, respect and caring. Being a 
caregiver for my best friend, ‘my mother’ 1 
was able to shower her with the love, respect 
and genuine caring that she bestowed to me. 
Together we daily faced the trials and 
tribulations of this disease and we said our 
good-byes-we won- our undying live is still 
our together.”____________________________
17
“As a caregiver it is important to be properly 
informed i.e., long-term care vs. Respite. Also 
what services exist in the community that may 
allow individuals to live in their homes. As a 
caregiver, I admit that 1 experienced the hard 
reality o f ‘crash and bum .’ It is exhausting, 
and frustrating. The repetition o f information, 
the energy expended trying to provide an 
outing can be very consuming. You forget to 
make and take time for yourself. Your ability 
to balance time is thrown out the window. I 
support others with Alzheimer’s as part o f my 
employment yet find my most difficult client to 
be the one closest to me.”
181
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
18
“My experience as a caregiver was very 
stressful until he was put in the hospital and I 
was told I should not bring him home. 
However, since I have spoken with and learned 
o f the problems others have had that I didn’t 
feel somewhat lucky. All in all it is no picnic!
1 felt a great duty to look after my husband to 
the best of my ability. It was great help to 
admit the facts and deal with them. I found 
people were sensitive and caring.”
19
“Though at times very stressful, it was a joy 
and privilege to help someone you dearly 
loved-and 1 would be glad to do it over.”
20
“Extremely stressful, unhappy times, stretched 
beyond abilities, fighting a losing battle, 
worried about inheriting this or other related 
diseases.”
21
“They sure need meeting and love and caring 
people to talk with. But I’m sure if  the 
volunteers has a cassette player on each day for 
1 to 2 hours the people there would really be 
much happier because they have something to 
do. They’re too old to get into T.V. and they 
just lie there when there’s music, the activity 
room is full to the brim with happy people. 
Please give them some entertainment, every 
day they deserve it, ok.”
22
I feel very special for having my mom for such 
a long time. Our dad passed at 60 in 1967. I 
admire her for accomplishing so much after he 
passed. Every day I have mom is a gift for me 
and our time with her is special although very 
stressful as I can’t fulfill her wish to ‘go 
home.’
23
“Very gratifying, while being stressful and 
frustrating at times.”
182
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
24
“I seen this happening slowly to my father over 
the last year. I am very realistic person always 
facing the problem head on. This is why I 
have learned to accept things the way they are 
and live with them. I have used this 
philosophy all my life and it works for me.”
25
“Part o f life, ‘pick up your cross and follow 
me.”
26
“A willing and honored responsibility to one 
who is loved so deeply. A thankfulness that I 
am able to be here. A humbling experience. A 
sense o f peace at times when I see the 
calmness and joy at times. At times hopeless 
and helpless feeling. A gift o f unfailing love.”
27
“I cared for my mother for nine years. Each 
day brought its own challenges. I learned love, 
patience and an understanding o f the processes 
o f the disease. I was fortunate to have a good 
relationship with Alzheimer’s Society, CCAC 
and our respite care worker who guided and 
supported me along the way. I feel blessed to 
have been with her to the end. She died at 
home on Nov. 5 /03.”
28
“Sad to watch a person whom you love go 
from vibrant and dependable to bored, 
withdrawn and unreliable and knowing it will 
only get worse.”
29
“No one knows what it is like to have a family 
member suffer with Alzheimer’s and to be in a 
home with no quality o f life, wanting to die, 
unless they have experienced it. What a 
difficult thing especially when it is a person 
who loved and took care of you so well and 
continued to do so until his terrible disease 
attacked him. Also when the other parent is 
still living you now have 2 parents to take care 
o f and 2 homes to visit. Your poor mother out 
o f guilt it going to the home everyday. You 
ask yourself which one will live the longest. 
Her stress level is high she is 76 and he is 80.”
183
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
30
“Need family help more. Less social life.”
31
“I really miss the discussions about every day 
activities. Always seems to end up in an 
argument. So the least said the better the 
mood. Also the lack of his doing small tasks.”
32
“Very demanding. You are on duty 24/7. The 
Day Program my husband attends 2 times a 
week is a life saver. Just to be able to go for a 
walk or shopping alone is a treat as he is 
slowing down all the time and he gets very 
disoriented. Our support group is also very 
important to me.”
33
“My stress is up and down. It depends if  my 
husband day and mood.”
184
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.