Dementia Across the Spectrum Webinar Series – Assessing Capacity and Supporting Decision-Making

Dementia’s Capacity Reckoning

Canada’s ageing population has already produced 771,939 people living with dementia as of January 2025, a total forecast to reach more than 1.7 million by 2050. New diagnoses exceed 414 each day. Against this backdrop, deciding whether an individual can still consent to treatment, manage property or direct their own care has moved from clinical routine to legal and ethical pressure point.

Policy changes have intensified the urgency. Quebec’s law, effective October 2024, now allows advance requests for medical assistance in dying from patients diagnosed with dementia or similar conditions that will erode capacity. Federally, a national consultation on the same issue concluded in early 2025. In Ontario, the Chief Coroner’s MAiD Death Review Committee reported 103 assisted deaths primarily linked to dementia between 2023 and 2024; many featured minimal documentation of cognitive testing, assessments conducted during delirium or family-driven requests, and palliative-care involvement in only 13.6 percent of cases.

The human and financial stakes are concrete. A declaration of incapacity can trigger court-appointed guardianship that seizes control of assets and living arrangements, sometimes within weeks. Overestimation of capacity leaves people exposed to financial exploitation or invalid consent for irreversible procedures. Families already deliver 580 million hours of unpaid care annually—equivalent to 290,000 full-time jobs—while 45 percent of dementia caregivers report high distress. Health systems feel the strain: dementia accounts for roughly half of alternate-level-of-care hospital days, tying up beds and driving long-term-care wait-lists.

Less discussed are the structural frictions. Emerging supported-decision-making models, promoted in recent provincial guides and the Canadian Charter of Rights for People with Dementia, seek to keep the person at the centre by providing assistance rather than replacement. Yet most provincial laws still operate on a binary capable/incapable test, creating uncertainty when cognition fluctuates. In the MAiD context, the legal insistence on capacity at the exact moment of provision collides with families’ fear of “missing the window,” while clinicians navigate liability, cultural expectations and the risk that systemic gaps in home care or palliative services quietly steer decisions toward death.