Caring Places for Dementia: Examining the Continuum of Care in Rural and Small Town Ontario

Abstract

This dissertation contributes to the growing body of geographic, gerontological, health, and social science research on community support for persons with dementia and their partners in care with a particular focus on rural and small town settings. Focusing on rural and small town settings as well as the range of sites and services involved in caring for dementia is increasingly important. The bulk of care for dementia is taking place in home and community settings, raising questions about the quality and kind of support available, particularly in rural areas that generally have fewer formal health services and a higher proportion of older people than urban areas. Within the current literature on dementia care in the community, there is evidence of distinct challenges to service provision in rural settings, differences in service use, and unmet care needs. However, both academic researchers and policy makers have generally failed to consider the experiences of the voluntary sector, partners in care, and persons with dementia in rural and small-town settings. To address this gap, I examine the continuum of care settings and the suitability of support for those living with dementia and their partners in care in rural and small-town Ontario. I ask: what services are available across the province of Ontario; how do those living with and caring for someone with dementia in rural Ontario experience places of care; and what are their specific needs and challenges over the course of the disease? To answer these questions, I conducted a survey of service-providers (N=20) in the province and carried out semi-structured interviews with persons with dementia and partners in care (N=73). The findings revealed regional variation in service availability and delivery as well as challenges related to service delivery in rural and small town settings. In fact, community support for persons with dementia in rural and small town setting is generally underdeveloped. I analyze the consequences of this underdevelopment for persons with dementia and their partners in care. I conclude with a set of suggestions for improving community care for persons with dementia and their partners in care.