“Not there yet”: Examining community support from the perspective of people with dementia and their partners in care

Abstract

People with dementia can live meaningful and engaged lives with the appropriate social and physical supports in place. There has been relatively little research, however, on the experiences and desires of people with dementia themselves as they negotiate informal and formal support in rural and small town settings. In this article, we draw on semi-structured interviews with 46 community-dwelling people with dementia and 43 partners in care in rural Ontario, Canada to examine how people with dementia relate to and within their communities as well as their perceptions of community support services. We identify the continued contributions of people with dementia to their own care and the care of others as well as common social, cultural, and organizational factors related to delayed service use and refusal to use particular services. We argue that care is “not there yet” for people in the earlier stages of dementia and that more attention needs to be paid to what people with dementia can offer their communities as well as the role of culture and gender in developing support. Our findings make an important contribution to understanding the experience of dementia in rural and small town Canada, which is relevant to rural healthcare and community support in other industrialized countries.