A Battle for Help, Not a Welcome to Care.

A diagnosis of Dementia is frightening. Most people elect to avoid public acknowledgement. Often the early years seem outwardly normal, active and full, despite everyday tasks becoming a quiet struggle. Managing medications, appointments, and finances are often creating avoidable distress and potential harm veiled in a cloak of secrecy. Supports through Home Care must begin at diagnosis building relationships and trust, not paperwork and data. Ontario must pledge to support those with dementia from diagnosis with regular consistent predictable care hours to create supports that grow and expand as needs change.

Ontario must legislate the right of people living with dementia and their families to exercise meaningful, formal authority over their own care plans — including the selection of providers, the design of services, and the timing and sequencing of support. Funding must follow the individual, not the administrative

convenience of the system.

A dedicated caregiver benefit must provide meaningful income replacement during leave, extending the federal EI Compassionate Care framework to reflect dementia's chronic, progressive nature — and cover part-time, contracts, and self-employed workers currently excluded from existing protections.

Every person with dementia in Canada should be provided with written confirmation of their diagnosis, what to expect, and who to call. A standardized dementia care pathway must begin with a diagnosis that automatically generates support and links family physicians, primary care professionals, specialists (geriatric medicine, geriatric psychiatry, and behavioural neurology), home care, community services, dementia support workers, and hospitals.

Create a provincial Dementia Support Worker (DSW) designation. This must be required, enforced, and appropriately compensated to reflect the specialized skills necessary. Dementia health and care require broad skills to manage relationships, behaviours, and communication issues, so complex in dementia. This training must be provided through provincial education programs.

In 2019, Ontario committed through the Connecting Care Act to create health system reforms that centralized care delivery under Ontario Health. The integrated health agencies were created to address cancer care (Cancer Care Ontario) and cardiac, stroke, and vascular care (CorHealth Ontario). Ontario Health must now address dementia. Dementia Care Ontario must be established to coordinate services from prevention and early diagnosis, through home care and community services, to long-term care and end-of-life support.

Dementia is underrecognized as a condition despite being over-represented as a challenge to health care delivery. Government program eligibility criteria should be designed to ensure that Dementia is listed as an eligible condition across all relevant provincial programs including hospital and community care, such as the Family Managed Home Care Program. Replace static functional assessments with tools suited to the fluctuating progressive course of dementia and the burden of care experienced in the community by their care partners.