The family picture: A collection of family case studies exploring roles, relationships, and identities after a dementia diagnosis and a transition into a long-term care home

Abstract

Objectives: This study aimed to explore people living with dementia and family members’ meaning of family after a transition into a long-term care home and the construct of family at the family and individual levels. Additionally, this study aimed to explore changes in roles, relationships, and identities within and between families along their dementia journeys. Methods: A narrative case study approach was used to present the family stories of each of the four cases featured. The method of analysis used was voice-centred relational analysis (VCRA) which included four readings of the data. The combination of narrative case study approach and VCRA provided a solid foundation to build upon with the sensitizing concepts of roles, relationships, and identities. The narratives and findings utilized quotations from people living with dementia and family members to analyze the sensitizing concepts. Findings: From the findings, four main themes emerged, including the meaning of family, maintaining identity, dementia as a disruptor, and dementia as a transformer. Family meant connection, safety, and love for many of the families featured in this study. Maintaining the identities of people living with dementia through roles, music, and fashion helped maintain their autonomy and dignity. Finally, these themes explored dementia as a disruptor of participants’ lives and a transformer of roles, relationships, and identities. Conclusion: All of the families featured in this study experienced disruptions and transformations of roles, relationships, and identities after a family member living with dementia moved into a long-term care home. Both positive and negative changes were described, which illustrated that dementia was not always a disruptor towards the negative, but a disruptor toward something new and transformed. This study emphasized the complexity and importance of family relationships.