Rural and remote dementia care challenges and needs: Perspectives of formal and informal care providers residing in Saskatchewan, Canada

Abstract

Introduction: Rural and remote settings pose particular healthcare and service delivery challenges. Providing appropriate care and support for individuals with dementia and their families living in these communities is especially difficult, and can only be accomplished when the needs of care providers and the context and complexity of care provision are understood. This paper describes formal and informal caregivers' perceptions of the challenges and needs in providing care and support for individuals with dementia living in rural and remote areas of Saskatchewan, Canada. Methods: A mixed-methods exploratory approach was used to examine caregivers' needs. This research was a component of a broader process evaluation designed to inform the initial and ongoing development of a community-based participatory research program in rural dementia care, which included the development of the Rural and Remote Memory Clinic (RRMC). Four approaches were used for data collection and analyses: (1) thematic analysis of consultation meetings with rural healthcare providers: documented discussions from consultation meetings that occurred in 2003-2004 with rural physicians and healthcare providers regarding plans for a new RRMC were analysed thematically; (2) telephone and mail questionnaires: consultation meeting participants completed a subsequent telephone or mail questionnaire (2003-2004) that was analysed descriptively; (3) thematic analysis of referral letters to the Rural and Remote Memory Clinic: physician referral letters over a five-year period (2003-2008) were analysed descriptively and thematically; and (4) examination of family caregiver satisfaction: four specific baseline questionnaire questions completed by family caregivers (2007-2010) were analysed descriptively and thematically. Results: Both physician and non-physician healthcare providers identified increased facilities and care programs as needs. Physicians were much more likely than other providers to report available support services for patients and families as adequate. Non-physician providers identified improved services, better coordination of services, travel and travel burden related needs, and staff training and education needs as priorities. Physician needs, as determined via referral letters, included confirmation of diagnosis or treatment, request for further management suggestions, patient or family request, and consultation regarding difficult cases. One-third of informal caregivers expressed not being satisfied with the care received prior to the Rural and Remote Memory Clinic assessment visit, and identified lack of diagnosis and long wait times for services as key issues. Conclusions: Delivering services and providing care and support for individuals with dementia living in rural and remote communities are especially challenging. The need for increased extent of services was a commonality among formal and informal caregivers. Primary care physicians may seek confirmation of their diagnosis or may need assistance when dealing with difficult aspects of care, as identified by referral letters. Differences between the needs identified via referral letters and questionnaire responses of physicians may be a reflection of the rural or remote context of care provision. Informal caregiver needs were more aligned with non-physician healthcare providers with respect to the need for improved access to additional healthcare professionals and services. The findings have implications for regional policy development that addresses human and other resource shortages.