“Dementia Doesn’t Mean That Life Doesn’t Have More Wonderful Things Ahead”: A Qualitative Study Evaluating a Canadian Dementia Support Services Program

Abstract

Background Community support programs can improve quality of life for people living with dementia and their care partners. Important to the successful implementation of such programs is close engagement with end-users to gain a better understanding of their needs. This study describes the perspectives of people living with dementia, care partners, and health-care providers on the First Link® dementia support program provided by the Alzheimer Society of British Columbia (ASBC). Methods Following a large-scale survey (N=1,164), semi-structured interviews were conducted with participants to explore in greater detail the different needs and themes that emerged from the first phase of the study. The interviews explored: 1) experiences with the program; 2) future planning; 3) meaning of independence; and 4) impact of the program on emotional and physical well-being. Results A total of 48 participants were interviewed in this study. Knowledge and education were key factors that helped participants manage the impact of dementia. Learning about dementia, the experiences of others, strategies on how to manage symptoms, what to plan for in the future, and how to access different services in the community, was tied to increased feelings of confidence and comfort, and decreased stress. Participants also provided suggestions for improvement of the First Link® dementia program such as further embed-ding the program into the patient journey, providing more services in remote areas, providing education for health-care providers, and increasing awareness of the program. Conclusion By emphasizing the lived experiences and needs of those liv-ing with dementia and their caregivers, this work will inform future research-based program evaluations globally and, in turn, improve the existing services to support people living with—and impacted by—dementia.