Increasing numbers of older adults in Canada will require care for Alzheimer's disease and Related Dementias (ADRD). The prevalence rate of dementia nearly doubles with every 5-year increase in age from the age of 60 years, rising to 32% in those aged 90-94. Moreover, the prevalence of ADRD in Canada is expected to increase from approximately 364,000 persons in 2000 to over 750,000 persons by 2030, with roughly half of these cases living in the community for up to five years or more before institutionalization. Although there is a growing commitment to support older adults with ADRD and their families in the community, there are many practice challenges and research gaps that need to be addressed in order to optimize service access and ultimately, optimal quality care.
Firstly, shifts in Canadian health care policies toward community care rely on the fact that family members, not paid care providers, assume and/or coordinate the majority of care. This level of assistance and care from family members, most of whom are female, has increased over the past few years. Most families, however, are ill-prepared for the type and intensity of care required for older adults with ADRD, especially as the disease progresses, and often do not know where to begin to seek advice about available supports and services. Although many community nurses and other health care providers have knowledge and skills to assist families with dementia care, their increasing workloads and managerial responsibilities often preclude regular involvement, leaving the family to navigate the health care system mostly on their own. Further research is necessary to examine the experiences of family caregivers as they pursue and use community-based dementia care services in order to identify their unique needs and ensure the provision of adequate support.
Secondly, the continuing shift of care from formal health care providers to families creates an "uneasy alliance" between unpaid and paid caregivers. Findings from those studies that examined relationships between family caregivers and care providers caring for individuals with ADRD suggest that family caregivers occupy an ambiguous position in relation to health care providers, who tend to view them as both the problem and the solution to care delivery. This ambiguity can and often does lead to conflict, and ultimately, ineffective coordination/partnering of services. Thus a need exists to 'reinvent' practice, devising approaches that result in a mutual understanding of the situation and negotiations as to who and what might help, yet more information is needed about the facilitators and barriers that support/hinder relational and partnering practices between and among older adults, their family members and providers in community-based dementia care.
Thirdly, recently developed services for older adults with ADRD and their family caregivers have not been as successful as was first anticipated. The lack of consistency, availability, flexibility and acceptability are well documented. In particular, persons in early stages of ADRD, older caregivers, female caregivers, male caregivers, and older adults and their caregivers living in rural communities, face unique challenges in accessing and using community services. Consequently, family members tend to receive limited assistance with accessing and coordinating appropriate services. Those who do receive support have shown improvement in their stress levels, endurance potential, and well being. Thus, because of the poor linkages between informal and formal care networks, further research is needed to identify those practice and policy changes that will lead to an integrated, collaborative model of community-based dementia care.