Thinking about the future: life after a diagnosis of dementia

Abstract

The purpose of this research was to explore people living with dementia’s perceptions of the future since being diagnosed. Research on the experiences of people living with dementia focuses on key aspects such as diagnosis, coping, relationships, and stigma. However, the sole experiences of those living with dementia is not often a focus. Therefore, five individuals living with dementia were recruited to participate in three to four focus groups to share their experiences living with dementia and their perceptions of the future. All participants had been diagnosed with early stage dementia between one and twelve years, and were living independently in their own place of residence. Constructivist grounded theory was utilized for this research with two theoretical frameworks: social citizenship and biographical disruption. Social citizenship informed this study and was the reason that only those living with dementia were included. Furthermore, biographical disruption was utilized to conceptualize the use of individuals’ biographies throughout their journey living with dementia. Themes identified in this study included: “making the best of it”, “I’m still capable”, “finding solidarity”, “life is ahead of me”, “the future is measured by pivotal moments” and “the future depends on relationships and family”. It was found that perceptions of the future had been influenced over time, and two broad meanings of the future emerged. There was both a present future and a distant future.