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Eight years after her husband’s Alzheimer’s diagnosis, Susan sat in a small meeting room at a Calgary care conference and heard a phrase that reframed everything.
The speaker said that families caring for someone with dementia often grieve for years before anyone offers them support, because nobody thinks to call it end-of-life care when the person is still walking around the house.
Susan had never once thought of palliative care as something available to her husband. He was not dying, exactly. He had been not-quite-dying for eight years. He still knew her some days. He still hummed along to Johnny Cash. He had also stopped being able to swallow properly, stopped recognizing his own children, and stopped sleeping through the night sometime around year six.
Nobody had ever suggested palliative care. She had never known to ask.
Palliative care for dementia is one of the least understood and most underused forms of support available to Calgary families. It is different from palliative care for cancer or heart failure in ways that matter enormously, and understanding those differences is what allows families to get help at the right time rather than years too late.
Why dementia palliative care is different
Most palliative care conversations are built around illnesses with a relatively predictable arc. A diagnosis, a treatment period, a decline, a final stage. Dementia does not follow that pattern, and that difference shapes everything.
The timeline is years, not months. Alzheimer’s disease and other dementias often progress over eight, ten, or fifteen years. Palliative care in this context is not a final chapter. It can be a decade-long partnership.
The person often cannot report their own symptoms. In later stages, someone with dementia may be in pain and unable to say so. Discomfort shows up as agitation, restlessness, refusal to eat, or a change in behaviour rather than as a complaint. Recognizing pain becomes an interpretive skill.
Decisions shift to the family. As dementia progresses, the person loses the ability to participate in decisions about their own care. Families end up carrying choices they never expected to make, often without clear guidance about what their loved one would have wanted.
Grief begins long before death. Families lose the person in stages. The conversations go first, then the recognition, then the personality. This is anticipatory grief, and in dementia it can last for years.
The trajectory is unpredictable. Someone can plateau for two years, decline sharply over a month, then stabilize again. Prognosis in dementia is notoriously difficult, which is one reason palliative care is offered later than it should be.
Our guide on palliative care vs hospice care for Calgary families explains the broader distinction between these two forms of care.
When palliative care makes sense in dementia
There is no single moment when dementia becomes a palliative situation. But there are signals that suggest a family would benefit from that support.
Palliative care is worth exploring when swallowing has become difficult, when weight loss has begun without another explanation, when infections are recurring, when mobility has significantly declined, or when hospital visits have become more frequent.
It is also worth exploring when behaviour has changed in ways that suggest discomfort, when the family caregiver is exhausted, or when decisions are becoming harder and the family feels unsupported in making them.
Importantly, palliative care can begin far earlier than the late stages. Some Calgary families bring palliative support into the picture in the moderate stage, particularly for help with symptom management, family support, and planning. Our article on when palliative care begins explores why earlier is usually better.
Recognizing pain in someone who cannot tell you
This is one of the most valuable skills a family can learn, and one of the most overlooked.
In advanced dementia, pain rarely announces itself. It shows up sideways, and families who do not know what to look for often interpret it as the dementia itself getting worse.
Signs that may indicate pain or discomfort include increased agitation or restlessness, new resistance during personal care, facial grimacing or furrowed brows, guarding a part of the body, changes in sleep patterns, refusing food, calling out or moaning, and rocking or repetitive movements.
A sudden change in behaviour in someone with dementia deserves investigation rather than acceptance. The most common causes are pain, infection (particularly urinary tract infections), constipation, medication side effects, and environmental discomfort like being too hot, too cold, or overstimulated.
Families who learn to read these signals catch problems weeks earlier than families who do not.
Comfort-focused care in advanced dementia
As dementia advances, the goals of care gradually shift. The question moves from what will extend life to what will make life feel better.
Eating and drinking. Appetite decreases naturally in advanced dementia, and swallowing often becomes unsafe. Comfort feeding, offering food and drink for pleasure rather than nutrition, becomes the gentler approach for many families. Decisions about feeding tubes are difficult and personal, and are best discussed with the medical team well before a crisis forces the conversation.
Reducing unnecessary interventions. Some medical procedures that make sense earlier in life become burdensome in advanced dementia. Palliative care helps families weigh whether an intervention will genuinely improve comfort or simply add distress.
Environment and sensory comfort. Familiar music, soft lighting, gentle touch, familiar scents, and a calm room do more for someone in advanced dementia than most families realize. Our article on dementia care at home in Calgary covers the daily-life side of this in more detail.
Presence over activity. In late-stage dementia, sitting quietly with someone matters more than trying to engage them. Being there is the care.
The hardest decisions families face
Dementia asks families to make decisions that no one prepares them for.
Whether to pursue aggressive treatment for a new infection, or to treat for comfort. Whether to hospitalize during a decline, or to keep someone home. Whether to continue medications that may no longer be helping. Whether to consider a feeding tube when swallowing fails.
None of these questions have universally right answers. They depend on what the person would have wanted, what their quality of life looks like now, and what the family can carry.
What palliative care provides is a partner in those decisions. A team that has helped many families through the same questions, that can explain what each option actually involves, and that does not leave the family to figure it out alone at 2 a.m. in an emergency room.
If your loved one is able to express their wishes now, even partially, having those conversations early is one of the kindest things a family can do for itself. Our article on navigating conversations about senior care offers guidance on how to begin.
Supporting the family through years of grief
Dementia asks families to grieve in slow motion, and that grief deserves acknowledgment.
Anticipatory grief in dementia is unlike most other grief. It arrives in waves, triggered by small losses. The first time he does not know your name. The last time she makes her own tea. The day the conversation stops being a conversation.
Families often feel guilty about this grief, because the person is still alive. That guilt is misplaced. Grieving the losses along the way is not disloyalty. It is what loving someone through dementia actually involves.
Palliative care includes support for the family, not just the person with dementia. Social workers, counsellors, and spiritual care providers are part of many palliative teams, and their role is to help the people around the illness as much as the person living with it.
Our article on caregiver burnout in Calgary covers the warning signs that families often miss in themselves.
How in-home care fits alongside palliative support
For most Calgary families, the goal is to keep their loved one at home for as long as safely possible. In-home care is often what makes that possible.
The medical palliative team manages symptoms and clinical decisions. In-home caregivers handle the daily reality of living with advanced dementia.
That includes personal care delivered with the patience that dementia requires, meals adapted to changing abilities, and the steady presence that reduces agitation. It includes respite care so the primary family caregiver can sleep, eat, and step away without guilt.
Continuity matters enormously in dementia care. A familiar caregiver who arrives at the same time each day, who knows the routines, and who knows which song calms things down is worth far more than a rotating cast of competent strangers.
Compassion’s dementia care and Alzheimer’s care services are built around this kind of consistency, working alongside whatever medical or palliative care support a family has in place.
Frequently asked questions
Is dementia considered a terminal illness?
Yes. Alzheimer’s disease and other progressive dementias are terminal conditions, though the timeline is often measured in years rather than months. Many families are surprised to learn this, because dementia is frequently discussed as a memory condition rather than a life-limiting illness. Understanding it as terminal is what opens the door to palliative support.
When should we consider palliative care for a parent with dementia?
Earlier than most families do. While palliative care becomes especially valuable in the later stages, it can be introduced much sooner for symptom management, family support, and planning. Difficulty swallowing, unexplained weight loss, recurring infections, significant mobility decline, and increasing hospital visits are all reasonable triggers to start the conversation.
How can we tell if someone with advanced dementia is in pain?
Watch for behaviour rather than words. Increased agitation, resistance during personal care, facial grimacing, guarding part of the body, disrupted sleep, refusing food, and calling out can all indicate discomfort. Any sudden behaviour change deserves investigation, since pain, infection, and constipation are common and treatable causes.
Should we consider a feeding tube if swallowing becomes difficult?
This is a deeply personal decision and one worth discussing with the medical team well before a crisis. Many palliative care specialists suggest comfort feeding, offering small amounts of food and drink for pleasure, as a gentler approach in advanced dementia. The right answer depends on the person, their stage, their previously expressed wishes, and the family’s values.
Can someone with dementia stay at home through the final stages?
Many Calgary families do keep their loved one at home throughout, particularly with a combination of palliative support and in-home care. Whether it is possible depends on the person’s needs, the home environment, and the family’s capacity. Overnight or 24-hour in-home care is often what makes it achievable.
How do we handle guilt about grieving while our parent is still alive?
Anticipatory grief is a normal and healthy response to dementia, not a failure of loyalty. Families lose pieces of the person over years, and grieving those losses as they happen is part of loving someone through this illness. Support from a counsellor, a support group, or a palliative social worker can help carry it.
Support that should arrive sooner than it usually does
The families who bring palliative care into a dementia journey earlier tend to describe the same thing afterward. Not that it changed the outcome, but that it changed the experience. Fewer crises. Better symptom management. Decisions made with guidance rather than in panic. A sense of being accompanied rather than alone.
Dementia asks more of families, over more years, than almost any other illness. The support exists. Most families simply do not know to ask for it.
If you would like to talk about what in-home support could look like for your family, whether alongside palliative care or on its own, the Compassion Senior Care team is here. You can learn more on our dementia care and palliative care pages, or reach out whenever you are ready.
