Ask most people when palliative care should start for someone living with dementia, and you’ll often hear “near the end.” That answer is understandable — and it’s also the myth this month’s theme is built to challenge. Dementia is a life-limiting, terminal condition, and the evidence is clear that a palliative approach belongs in the conversation far earlier than it usually arrives.¹
We’re starting the conversation with a national priority of access and equity across Canada² identified by the Canadian Hospice Palliative Care Association. We look through a specific, concrete lens at how people living with cognitive decline access palliative care, and who gets left out when they do. Rural and remote communities, newcomers, and Indigenous communities, and a diagnosis of dementia makes an already uneven system harder to navigate. It takes two things working together: palliative care training that helps care teams recognize a dementia diagnosis would benefit from a palliative approach and compassionate community care that reaches people wherever they live.
Is Dementia a Diagnosis that Should be Cared for with a Palliative Approach?
Yes, and the research on dementia’s clinical course explains why. Advanced dementia follows an unpredictable, often prolonged trajectory marked by recurring complications like eating problems, pneumonia, and febrile episodes, each carrying real consequences for ongoing symptoms and suffering.³ Families and even care teams are frequently caught off guard by a decline they didn’t see coming, in part because dementia doesn’t announce itself the way a cancer diagnosis can. There is rarely a single moment that clearly signals “it’s time.” That ambiguity is exactly why waiting for a clear turning point before introducing a palliative approach leaves families and residents without the support they could have had months, sometimes years, earlier.
Staff working in long-term care know this tension well. Research on frontline perspectives found that structural barriers including heavy workloads, limited access to specialist palliative resources, and unclear roles around end-of-life planning get in the way of delivering the kind of palliative care staff know people with dementia need.⁴ The barrier usually isn’t a lack of will. It’s a lack of structure, time, and dedicated knowledge of the palliative approach to care that makes early integration possible for the people delivering hands-on care every day.
The Access Gap: Who Is Missing Care?
Equity in serious illness care is rarely about equal access to resources, and dementia sharpens that inequity. Research on socially disadvantaged populations accessing serious illness care points to a consistent pattern: where you live, your income, and your social position more often than not shape whether and when you receive supportive care, independent of your diagnosis.⁵ The same pattern holds in inner-city and underserved urban settings, where integrating a palliative approach requires meeting people where they are, often outside the systems built around a traditional hospice palliative caremodel.⁶
Globally, the World Health Organization’s dementia action plan names equitable access to care and support as a core pillar of a public health response to dementia, not an optional add-on.⁷ At home, the Alzheimer Society of Canada’s national strategy overview makes a similar case: as the number of Canadians living with dementia grows, so does the urgency of building care systems, including palliative and end-of-life care, that reach people regardless of geography or identity.⁸
For rural and remote communities, this can mean travelling hours for specialist input that urban families access easily. For newcomers, it can mean navigating an unfamiliar system in a second or third language, without a clear sense of what palliative care even offers.
For Indigenous communities, it means something more specific still. They have had to exist with a colonial system that was built specifically to exclude their communities. None of these systemic gaps close through a single service or specialist team, they close through compassionate community care and building new systems: neighbours, volunteers, faith communities, and local health workers who extend a palliative approach into the everyday places people with dementia live.
Truth, Safety, and Culturally Grounded Care
September holds Truth and Reconciliation Day and Orange Shirt Day, and this month’s dementia-and-access lens is where that history meets daily practice. Equitable palliative care for Indigenous people living with dementia can’t be built by adding a land acknowledgment to an otherwise unchanged model of care. It requires culturally safe approaches shaped by community, informed by history, and grounded in trust that has often been broken by the healthcare system itself.
The Canadian Hospice Palliative Care Association’s national model for hospice palliative care sets out the norms of practice this kind of care is measured against, but a model is only as good as its application.⁹ Culturally safer dementia and end-of-life care means care teams learning, listening, reflecting and building relationships with Indigenous communities long before a crisis moment, not arriving with a checklist once someone is already in decline.
What This Looks Like in Practice
A review of interventions for dementia palliative care across different care settings found that the most effective approaches share a few common threads: they start early, they involve the whole care team rather than a single specialist, and they adapt to the setting be that home, long-term care, or hospital rather than assuming one model fits everywhere.¹⁰ Good palliative care training and strong compassionate community care networks are what make those threads possible in practice. For PSWs and frontline staff, that translates into practical, everyday actions:
- Watch for changing needs across the cognitive spectrum, not just at diagnosis or at the very end. Comfort, communication, and decision-making needs shift throughout the dementia trajectory.
- Ask about access barriers directly. Distance, language, transportation, and trust in the system are all things a family may not raise unprompted.
- Bring culturally safer care into everyday care, not just formal care planning conversations, it’s built through small, consistent relational interactions.
- Advocate for earlier conversations about comfort-focused goals, even when a “palliative” label hasn’t formally been applied yet.
A Note on World Suicide Prevention Day
September also holds World Suicide Prevention Day, a reminder that grief and serious illness touch the people providing care as much as the people receiving it. Supporting someone through dementia and access barriers is heavy, ongoing work. Asking a colleague, a family caregiver, or yourself “how are you really doing?” and meaning it is part of equitable care too.
Where Life and Death Matters Fits In
This is the conversation we’re continuing in our September webinar, Palliative Care Everywhere: Dementia, Access and the Gaps We Must Close*, with Dr. Daphna Grossman, a family physician with over 30 years of experience delivering palliative care across urban, rural, in-home, hospital, and long-term care settings. The session dispels the “end-stage only” myth around dementia, walks through the access inequities facing rural, remote, newcomer, and Indigenous communities, and closes with practical, evidence-informed calls to action for care teams.
Our textbook ‘Integrating a Palliative Approach: Essentials for Personal Supports, Health Care Aides and Continuing Care Workers’ builds this same early-and-equitable approach into everyday PSW practice, helping direct care providers recognize when a palliative approach applies, long before “end of life” is the phrase anyone is using.
For further reading and national context, we recommend the WHO Global Plan on Dementia, the Alzheimer Society of Canada, CIHI’s spotlight on dementia and palliative care, and Hospice Palliative Care Ontario’s models of care.
Memory, access, and dignity aren’t three separate issues. For the person living with dementia and thepeople who care beside them, they’re the same conversation and it’s one worth having now.
References
- World Health Organization. (2017). *Global action plan on the public health response to dementia 2017–2025*. WHO Press.
- Canadian Hospice Palliative Care Association. (2013). *A model to guide hospice palliative care: Based on national principles and norms of practice*.
- Mitchell, S. L., et al. (2009). The clinical course of advanced dementia. *New England Journal of Medicine, 361*(16), 1529–1538.
- Hill, E., Savundranayagam, M. Y., Zecevic, A., & Kloseck, M. (2018). Staff perspectives of barriers to access and delivery of palliative care for persons with dementia in long-term care. *American Journal of Alzheimer’s Disease & Other Dementias, 33*(5), 284–291.
- Horrill, T. C., Crawford, J., Beck, S. M., Bourgeois, A., et al. (2026). Access to cancer treatment for adults who are socially disadvantaged: population-level implications. *SSM – Health Systems*.
- Stajduhar, K. I., et al. (2020). Integrating a palliative approach in inner-city settings.
- World Health Organization. (2017). *Global action plan on the public health response to dementia 2017–2025*. WHO Press.
- Alzheimer Society of Canada. (2022). *Dementia in Canada: A national strategy overview*.
- Canadian Hospice Palliative Care Association. (2013). *A model to guide hospice palliative care: Based on national principles and norms of practice*.
- Froggatt, K., et al. (2020). Palliative care in dementia: A review of interventions across care settings. *International Journal of Geriatric Psychiatry, 35*(3), 297–309.
