Some grief is clear and immediate: A spouse or parent passes away, and you mourn their loss alongside your community. But other types of grief arrive quietly. There’s no funeral, no clear goodbye, no moment when the world officially recognizes what’s been lost. For loved ones of people with dementia, grief shows up in small, ordinary moments: a lost key, a forgotten name, a conversation that suddenly falls apart.
This is ambiguous grief — the pain of losing someone who's still alive, while a shared life slowly, irrevocably changes.
Dementia lives in this uncomfortable in-between space. It’s not just memory loss, but the unraveling of roles, routines, shared meaning, and imagined futures. The loss is cumulative.
After writing my book, Morning Leaves: Cultivating a Life of Beauty, Meaning, and Joy, I became a certified grief support specialist at the University of Wisconsin to help others facing loss. I’ve seen this phenomenon again and again in conversations with friends, families, and people who attend the grief workshops I lead. The stories I hear are marked by loss without closure, grief that unfolds while life keeps moving forward.
Frustration all around
At first, changes are easy to explain away: a missed appointment, a repeated story, a once-simple task that suddenly feels hard. Over time, these moments grow more frequent and more consequential. Independence shrinks. Confidence fades. Responsibility shifts. The relationship becomes something else.
For the person living with dementia, there is often fear, frustration, and flashes of awareness. Many sense what’s happening long before they can name it. For loved ones, witnessing this can be gut-wrenching.
Grief, responsibility, and exhaustion become tangled together. Loving someone deeply while grieving them at the same time is confusing and painful — and rarely acknowledged. Society knows how to respond to death, but it struggles with grief that unfolds slowly, alongside caregiving. And any grief support rarely shows up when it’s most needed.
Dementia tests everyone's patience: Questions repeat, help is resisted, emotions erupt without warning. Everyone feels overwhelmed and misunderstood at times.
Loved ones often feel guilty about their frustration, as if love should always be calm and selfless. But frustration isn’t a failure of compassion; it’s a human response to chronic stress and ongoing loss. Naming it — recognizing it as a type of ambiguous grief — can be a relief, even a lifeline.
What still remains
Even as so much disappears, not everything is gone.
There are moments when connection breaks through: a familiar song, a shared laugh, a hand squeezing back. Joy doesn’t vanish, but it becomes smaller, quieter, and rooted in the present. Noticing it takes flexibility and resilience.
Still, it's normal to grieve futures that won’t happen — trips not taken, conversations left unsaid, milestones missed. Uncertainty looms: How fast will this change? How long can we manage? What will this cost?
For some, dementia reflects their own fears back at them — aging, dependence, loss of self, death. Unspoken fears grow heavier. Saying them out loud doesn’t erase them, but it often softens their grip.
The practical weight
Beyond the emotional pain is the daily reality: finances, medical systems, appointments, coordination, or family tensions resurfacing under stress. Who carries the load? Who decides? Who gets to rest?
Love alone isn’t enough. Care requires planning, boundaries, and hard conversations. Caregiving also requires endurance, which many people treat as proof of their devotion to the person they're caring for. But endurance without support leads to burnout. Asking for help — clearly, specifically, without apology — is not weakness. It’s essential.
That assistance might look like a neighbor sitting with the dementia patient for an hour so you can take a walk to a nearby park, a support group that puts words to what you’re feeling, or a therapist who helps untangle grief from obligation. These aren’t nice-to-haves; they’re necessities.
Naming ambiguous grief
Ambiguous grief thrives in silence. Naming losses — through conversation, writing, or reflection — creates space for compassion, both from others and toward oneself. It allows grieving without waiting for permission or a final ending.
When words fall short, creativity can help. Music, art, movement, and breath can express what language can’t and release the tension the body is holding.
A shift in perspective
Loving someone with dementia reshapes how we understand love, loss, and presence. There are days filled with anger and sorrow — Why did Mom forget my name this morning? — and moments of grace that arrive unexpectedly.
Ambiguous grief doesn't resolve neatly; that term "ambiguous" is true to most dementia caregivers' experiences. But within the experience, many people discover a deeper capacity for patience, honesty, and tenderness. Love becomes less about who someone used to be and more about showing up for who they are now.
And for you, the loved ones, this is also a story of resilience and learning how to live in the moment. Even as things fall away, meaning can still be found in care, presence, and small acts of love.
Laing Rikkers is the award-winning author of Morning Leaves: Cultivating a Life of Beauty, Meaning, and Joy. Drawing on a career that spans human resources, private equity, and entrepreneurship, Rikkers brings a deeply human perspective to change and growth. Through writing, grief workshops, and keynote speaking, Rikkers helps individuals and communities transform loss into self-awareness and renewed joy.
