Towards a Community-Based Dementia Care Strategy: How do We Get There from Here?

As recent policy reports in Ontario and elsewhere have emphasized, most older persons would prefer to age at home. This desire does not diminish for the growing numbers of persons living with dementia (PLWD). Nevertheless, many PLWD end up in residential long-term care (LTC) or in hospital beds. While LTC is valuable for PLWD with highly progressed cognitive and functional impairment requiring high-intensity care, it can be a costly and avoidable option for those who could remain at home if given early access to a coordinated mix of community-based supports. In this lead paper, we begin by exploring the "state of the art" in community-based care for PLWD, highlighting the importance of early and ongoing intervention. We then offer a brief history of dementia care policy in Ontario as an illustrative case study of the challenges faced by policy makers in all jurisdictions as they aim to re-direct healthcare systems focused on "after-the-fact" curative care towards "before-the-fact" prevention and maintenance in the community. Drawing on results from a "balance of care" study, which we conducted in South West Ontario, we examine how, in the absence of viable community-based care options, PLWD can quickly "default" to institutional care. In the final section, we draw from national and international experience to identify the following three key strategic pillars to guide action towards a community-based dementia care strategy: engage PLWD to the extent possible in decisions around their own care; acknowledge and support informal caregivers in their pivotal roles supporting PLWD and consequently the formal care; and enable "ground-up" change through policies and funding mechanisms designed to ensure early intervention across a continuum of care with the aim of maintaining PLWD and their caregivers as independently as possible, for as long as possible, "closer to home."