Rural families caring for a relative with dementia: barriers to use of formal services

Planning for the care of increasing numbers of elderly persons with dementia has become an urgent health services concern in Canada and elsewhere, yet little is known about the challenges of providing appropriate dementia care in rural areas. A community-based approach was used to obtain input from decision-makers and others to develop the objectives and design for a study of rural dementia care in the province of Saskatchewan, Canada. The resulting study design, which used both qualitative and quantitative methods, was then pilot tested in one rural health district (16,000 km2, population 20,000). This paper describes the study development process and reports selected findings from focus groups conducted with home care staff and family members, focussing on the theme of low use of formal supportive services such as home care and support groups by family caregivers. Participants identified eight barriers to the use of formal services, described consequences of low service use, and suggested strategies for addressing this concern.