Dementia as a Disability and Human Rights Issue
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In their article "Toward a Community-Based Dementia Care Strategy: How Do We Get There from Here?" Morton-Chang et al. draw attention to the urgent need for a community-based dementia care strategy in Canada. Drawing from national and international experience, including an illustrative case study of policy in Ontario, they identify three key strategic pillars to guide strategic action: 1. Engage persons living with dementia (PLWD) to any extent possible in decisions around their own care. 2. Acknowledge and support informal caregivers in their pivotal roles supporting PLWD and consequently the formal care. 3. Enable "ground-up" change through policies and funding mechanisms designed to ensure early intervention across a continuum of care. In this paper, we aim to broaden the lens for dementia and strategic action by framing dementia in terms of disability and human rights. We contend that a human rights approach is critical to addressing the vulnerability of people with dementia and caregivers and achieving the principal goals of dementia care, as they are largely represented in the strategic pillars proposed. These pillars direct action towards key areas of change within the existing health system but may not in and of themselves create the transformative change needed across systems and levels. Through the lens of disability and human rights, we reflect upon the complexity of dementia and move from the individual to the social sphere - shifting the focus from "care" that is oriented to "maintenance" in the community, towards "enablement," "empowerment" and social change, as it involves the reconceptualization of dementia that has begun to take shape at local, national and international levels. This brings us to the central argument of this paper, that dementia is as much a human rights issue and a social problem as it is a health issue, necessitating widespread social/systems change and strategic action that "challenges and changes the defining beliefs of a system, resource and authority flows and routines in such a way as to protect human rights and ultimately enable the resilience of the individual and the broader system" (Ecosystems for Systems Change n.d.). Towards this aim, we will apply the concepts of disability and human rights to the pillars posited by the authors and suggest that each can be made stronger by shifting our focus from care to enablement and social change.
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