Why dementia is a stress test for Canadian healthcare
Every year, thousands of Canadians receive a diagnosis that will dramatically change their lives and those of their families. A dementia diagnosis is far more than a neurological condition that affects memory; it changes every aspect of the conversation. From whether a person can remain safely in the home they lived in for the past 30 years, whether they can continue to drive and cook meals they enjoy, whether an adult child needs to move closer to provide support, the list goes on.
Their needs change over years, sometimes without any specific medical event indicating that more help is needed.
Still, Canadian dementia care is organized around separate encounters: a family doctor’s appointment, a specialist referral, a hospital admission, a home care assessment. Between those encounters, someone has to notice what has changed, work out which service is needed, relay information and follow up when a referral goes nowhere. Right now, that someone is a spouse, an adult child or a friend.
The question is not simply whether Canada has enough dementia programs, but whether the services we already fund can operate as one system for the person who needs them.
This distinction is important because, right now, dementia is a stress test for the whole health care system.
Whether a home care visit is unavailable, a caregiver cannot get respite or a hospital discharge is not coordinated with community support, the pressure does not disappear. It moves to families and, sometimes, back to the emergency department.
The consequences reach people who may have no personal connection to dementia. In an analysis published in 2018, the Canadian Institute for Health Information found that older adults living with dementia account for about half of all reported hospital days spent for care after the acute phase of their admission. Behind that figure are people whose needs may not be adequately supported at home or in the community before a crisis brings them to a hospital, who then further face delays because the right care is not available when they’re ready to leave.
The pressure on hospital capacity is real, but people living with dementia are not the cause of the failure.
Our forthcoming Brainwell Institute report, “Bridging the Gap in Dementia Care”, identifies two linked problems. First, we ask families to coordinate services that were never designed to work reliably together. Second, we often mistake helping people navigate those services for making the services themselves coordinated.
Community support programs and other local initiatives help families understand a diagnosis, find support and plan for changes. This is navigation. But a navigator cannot, on their own, give a family doctor access to a shared care plan, create a home-care opening or make two organizations accountable for a missed handoff. Helping families find the right door does not guarantee that the next service is ready or that anyone is responsible for the transition.
So, what would coordinated care look like from the kitchen table?
One clear point of contact.
A care plan that follows the person.
A known next step when everyday tasks become harder.
Communication between providers that does not depend on a daughter repeating her parent’s history at every appointment.
Support for caregivers before exhaustion becomes a crisis.
Ensure the person living with dementia remains part of every decision.
These are practical functions, but it still does not guarantee that every person will receive the same services everywhere. Provinces and territories organize care differently. The shared question is whether anyone has responsibility for connecting primary care, hospitals, home care and community support, and checking whether those connections work.
Our report examines how cancer, stroke and palliative care systems use specific coordinating authorities, common treatment pathways, regional and local implementation and performance measures. These structures make it clear who is responsible when care fails to connect. At a national level, shared standards and comparable data can help reveal gaps in the system and establish responsibilities and follow-up processes to determine what happens after diagnosis.
Families are essential partners in dementia care. Whether they are also required to act as its unpaid infrastructure is one of the defining questions facing Canadian health care.
Dr. Saskia Sivananthan is co-founder and Chief Executive Officer of The Brainwell Institute and Affiliate Professor, Department of Family Medicine at McGill University.
The views expressed are those of the author(s). Canada Healthwatch publishes a range of perspectives and does not necessarily endorse the opinions presented.
