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Executive Summary

An estimated 600 000 Canadians are currently living with dementia. While this is already a substantial proportion of the older adult Canadian population, the figure is expected to triple over the next 30 years as the Canadian population ages. As the number of Canadians with dementia is expected to increase, so too is the demand for dementia-inclusive home and community care. Although provinces, territories, and organizations across Canada are working toward their own home and community care strategies, a coordinated effort is needed to identify existing gaps in the provision of home and community care for persons living with dementia (PLWD) and their care partners. This could be addressed by developing standardized Canada-wide guidelines.

The objectives of this research project were to identify: (1) existing legislation/regulations and associated gaps; (2) best practices, guidelines, and initiatives for dementia-inclusive home and community care; (3) barriers, gaps, challenges, and needs experienced by PLWD, care partners, and home and community care providers; and (4) priority areas for dementia-inclusive home and community care standards development.

A mixed-methods approach was used, allowing for the triangulation of both quantitative and qualitative data to inform emerging recommendations. The research project consisted of four components: an environmental scan; a literature review; an online stakeholder survey; and semi-structured stakeholder interviews. Data were collectively integrated and analyzed to inform recommendations. We received 102 survey responses from across Canada. This included 8 PLWD, 36 care partners, and 58 home and community care providers. A total of 12 interviews were conducted with PLWD (4), care partners (3), and home and community care providers (5).

The research project identified existing regulations and legislation pertinent to the home and community sector and noted the lack of dementia-specific considerations in most Canadian regulations and legislation. Moreover, although Canada has Harmonized Principles for Home Care, it does not currently have pan-Canadian standards for home and community care, either general or specific to dementia-inclusive care. Best practices and innovative models for dementia-inclusive care have been identified; however, implementing them has proved challenging, as has delivering dementia-inclusive care. These challenges include an unstable workforce and staff shortages, as well as insufficient time for the delivery of dementia-inclusive care. PLWD and care partners also expressed the need for tailored, person-centred care; integrated and collaborative care; consistent and reliable care; equitable access to care; and support and respite for care partners. The research project also identified the needs of home and community care providers. Providers expressed a need for dementia-specific education and training, pay equity with home and community care providers working in other sectors (e.g., long-term care), and safe working conditions.

Analysis of the barriers, challenges, and needs experienced by PLWD, care partners, and home and community care providers in the context of the current Canadian home and community care system revealed gaps to be addressed to enable the provision of dementia-inclusive home and community care. The development of Canadian standards for dementia-inclusive home and community care would serve to bridge the gap between the current system and a dementia-inclusive system. Four priority areas for standards development are recommended:

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Education and training

• Foundational knowledge and practical skills
• Combatting stigma and building awareness

Support for care partners

• Including adequate respite, practical information about caregiving, education and support in system navigation, and guidance regarding available financial supports

Access to quality care

• Consistency in the delivery of care
• Recognizing autonomy of PLWD

Human resources for home and community care

• Equitable pay for home and community care providers
• Supports for home and community care providers
• A stable, skilled workforce