Research‐based evaluation of a dementia support program through lived experiences

Abstract

AbstractBackgroundCommunity support programs can improve quality of life for people living with dementia (PLWDs) and their caregivers (CGs). 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 PLWDs and CGs on the First Link® dementia support program provided by the Alzheimer Society of British Columbia.MethodFollowing a large‐scale survey (N = 1164), semi‐structured interviews were conducted with PLWDs and CGs who access and do not access the First Link® program to explore in greater detail the different needs and themes that emerged from the survey data. 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.ResultA total of 38 participants were interviewed (7 PLWDs, 31 CGs). Participants who found that the First Link® dementia program was helpful pointed to their experiences being validated and feeling that they were not alone in their journey. Knowledge and education were key factors that helped participants manage the impact of dementia. Learning about what dementia is, 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, were tied to increased feelings of confidence and comfort, and decreased stress.In terms of their future, participants expressed that it was important to have legal plans in place (e.g. power of attorney), organize personal finances, as well as prepare to manage their estate (e.g. downsizing), access home care, and transition to long‐term care facilities.Participants provided suggestions for improvement of the First Link® dementia program such as embedding the program into the patient journey, providing more services in remote areas, providing education for HCPs, and increasing awareness of the program.ConclusionBy emphasizing the lived experiences and needs of those living 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.