The Grief No One Talks About: Ambiguous Loss in Dementia Care
Submitted By Gayon Buchanan, CADDCT, CDP, CDSGF
Bella Cares LLL.
When my dad had advanced Lewy body dementia, he lived in a nursing home for 16 months. At visits, I would ask myself, “What can I do to make this visit enjoyable for Dad and me?” I tried different ideas, some successful, other times he appeared oblivious. Since then, in my studies of caregiving resources, I have come across more ideas.
Learning to adapt to one of the most painful realities of dementia is that loss often begins long before death.
Painful Realities Of Dementia
One of the most painful realities of dementia is that loss often begins long before death.
They are still here. Still breathing. Still sitting at the table. Still needing care. And yet, little by little, the person you have always known begins to feel farther away. The conversation changes. The connection shifts. The familiarity that once anchored the relationship becomes harder to reach.
That is the heartbreak many caregivers live with every day.
In dementia care, this is called ambiguous loss: the emotional pain of having a loved one who is physically present but psychologically or cognitively altered. Families grieve the loss of the person they once knew while continuing to care for the person who is still here. It is a living loss, and because it does not come with a clear ending, it often goes unrecognized.
That is what makes it so difficult.
People Don’t Know How To Respond To Grief
Most people know how to respond to death. They understand funerals, condolences, and the rituals of mourning. But ambiguous loss does not offer that kind of closure. There is no defined moment when grief begins, and no socially accepted script for how caregivers are supposed to carry it. So, they keep going. They manage medications, appointments, behaviors, sleepless nights, safety concerns, and the emotional demands of caregiving, all while quietly grieving a loss few people around them fully understand.
This is where so many caregivers get stranded emotionally.
Because the grief of dementia is rarely just grief. It is guilt for mourning someone who is still alive. It is loneliness in a room you do not physically occupy alone. It is frustration, tenderness, anger, sorrow, numbness, and exhaustion, sometimes all before noon. It is loving someone deeply while also mourning what the relationship used to be.
That complexity can be hard to admit. It can feel disloyal. It can feel selfish. It can feel like something that should be pushed down to keep functioning.
So many caregivers do exactly that.
Staying Busy Avoids The Pain
They stay busy. They overfocus on tasks. They move into problem-solving mode. They keep their minds racing because stillness might let the sadness catch up. One person who used my grief and healing journal shared a striking realization: they had been making themselves anxious so they would not have to feel sad and depressed.
That is not unusual. It is honest.
Sometimes anxiety becomes a form of emotional avoidance. It gives grief somewhere to hide. It can feel easier to stay activated than to sit with sorrow. Easier to worry than to weep. It is easier to organize, plan, and brace for the next crisis than to name the ache underneath it all.
But grief does not disappear just because it has been outrun. It shows up elsewhere. In irritability. In chronic tension. In exhaustion that sleep does not fix. In emotional numbness. In resentment. In burnout.
Caregivers are not weak when this happens. They carry too much, often with too little space to process any of it.
That is why naming ambiguous loss matters.
Language does not erase pain, but it does make pain easier to understand. When caregivers hear that what they are experiencing has a name, something shifts. They stop questioning whether they are “grieving too soon.” They stop dismissing the emotional toll of what they are living through. They begin to understand that mourning change is still mourning. That sorrow in dementia care is not irrational. It is expected.
And frankly, it is overdue that we say this out loud.
Addressing Emotional Support Is Critical
Caregivers need more than education about dementia. They need more than care tips, schedules, and survival strategies. Those things matter, but they are not enough. We cannot keep addressing dementia care as though it is only practical. It is emotional work. Relational work. Often spiritual work. It reaches into identity, family dynamics, and the deepest parts of the heart.
Caregivers need space to tell the truth about that.
They need permission to acknowledge that their loved one is still here and that something meaningful has been lost. They need support that does not rush them past grief or shame them for feeling it. They need places where they can reflect honestly, without having to perform strength every minute of the day.
Because healing in dementia care does not look like “moving on.” It looks more like learning how to hold love and grief in the same hand.
It looks like recognizing what has changed and refusing to pretend it does not hurt. It looks like making room for sadness without letting it define everything. It looks like giving yourself the kind of compassion you so freely extend to everyone else.
That kind of healing is slow. It is uneven. It does not happen on command.
A Comfortable Space To Be Honest Is Critical
But it does begin with honesty.
That is part of the heart behind my grief and healing journal. It was created to give caregivers a place to pause, reflect, and put language to what they are carrying, especially the hidden grief that comes with ambiguous loss. Not to rush healing. Not to force meaning out of pain. But to make room for what is real.
Caregivers spend so much of this journey tending to the needs of others. They deserve care for their own emotional lives, too.
Because dementia care is not only about managing decline.
It is also about surviving the slow heartbreak of loving someone through profound change.
And no one should have to carry that grief without language, without support, or without somewhere to place it.
If my grief and healing journal can offer even a small space for that kind of reflection, then it is doing exactly what it was created to do.
Gayon Buchanan, CADDCT, CDP, CDSGF
Bella Cares LLC.
Gayon Buchanan is a Certified Dementia Practitioner, Alzheimer’s disease and dementia care trainer, and founder of Bella Cares LLC. With over a decade of leadership experience in geriatric and memory care, she equips caregivers and organizations with practical, person-centered dementia strategies. She is the author of Grace for the Caregiver’s Heart: Scriptures and Affirmations for Every Stage of Dementia Care and Beyond the Diagnosis, and she volunteers as an advocate with the Alzheimer’s Association.
Learn more at www.bellacares4you.com.