Grieving While They're Still Here: Dementia and the Long Goodbye

Maybe it was the first time they called you by your sister's name. Or the afternoon you took the car keys and they looked at you like a stranger. Or tonight, sitting beside them, holding the hand you've held for years, and missing them so much it aches, even though they're right here.

My own loss came all at once, so I won't pretend I know this road the way you do. But I know what it is to grieve, and to feel like the people around you can't quite see it. With dementia, that feeling can last for years.

So this is a place to set some of it down. We'll put a name to what you're feeling, walk through the losses and the hard decisions, and find real help for the stretch ahead, including after.

The Grief That Comes Before Goodbye

We expect grief after a death. With dementia, it often starts long before. The Alzheimer's Association says caregivers may begin to feel loss as soon as they hear the diagnosis, and that many people around you may not realize you can grieve someone who is still alive.

Family therapist Dr. Pauline Boss gave this a name: ambiguous loss. It's a loss with no clear ending, where someone is physically here but psychologically, in important ways, gone. She names Alzheimer's and other dementias as examples, and she explains that this kind of loss can freeze the grieving process, because there's nothing certain to grieve yet.

That's why it can feel like you're doing grief wrong. You aren't. There's simply no funeral, no casseroles, no card for this part. Just having a name for it helps many people feel a little steadier.

And you are far from alone. Nearly 13 million Americans give unpaid care to someone with dementia. About two-thirds are women, more than a third are daughters, and about 30% are 65 or older themselves.

The Losses Along the Way

Researchers describe dementia grief as its own kind of grief, one that keeps cycling as the illness changes (Blandin and Pepin, 2017). You might grieve:

• The conversations you used to have, and the advice you can't ask for anymore
• Being known: your name, your face, your shared history
• Their humor, their warmth, the way they showed love
• The future you planned together
• Your own life as it was: your time, your work, your friends, your sleep
• Your role. A daughter becomes a caregiver. A husband becomes a nurse.

It can help to name these one at a time, out loud or on paper. A loss you can name is easier to carry than one that sits in the dark.

When the Grief Comes Back Again

The Alzheimer's Association tells caregivers to expect to feel the loss more than once. Just as you adjust, something reopens it:

• A good day. They laugh at the old joke, or say your name, and for a moment they're back. Then they're gone again.
• A new stage. A move, a fall, needing help in the bath. Each one can feel like losing them again.
• When they ask for someone who has died. Some people can take a gentle reminder. But if hearing it again brings fresh, painful grief each time, the UK's Alzheimer's Society suggests it may be kinder not to keep reminding them, and to respond to the feeling instead: “You miss her. Tell me about her.” There's no perfect answer, and it's okay for this to hurt you too.

Every Kind of Dementia, Every Kind of Family

Most of what's written about this grief pictures an older parent with Alzheimer's and a grown daughter. Your story may look different.

• Frontotemporal dementia (FTD) often begins with changes in personality, behavior or language, not memory, and most people are diagnosed between 45 and 64. Families may lose a person's warmth while their memory seems fine, and others may not believe anything is wrong.
• Lewy body dementia can bring big swings in alertness and seeing things that aren't there. Good hours and hard hours can make it hard to know where you stand.
• Vascular dementia can change suddenly after a stroke, so losses may come without warning.
• Younger-onset dementia affects about 200,000 Americans under 65. Families may be juggling jobs, kids at home and money worries all at once.
• Down syndrome: adults with Down syndrome have a much higher risk of Alzheimer's, often decades earlier. Parents and siblings who have cared for them all their lives may face this grief on top of a lifetime of care.
• LGBTQ+ families and chosen family may grieve without the recognition others get. SAGE and the National Resource Center on LGBTQ+ Aging have caregiving help.
• Caring from far away brings its own guilt: every phone call that goes badly, every visit where they don't know you. Distance doesn't make your grief smaller.

The Feelings People Are Ashamed Of

The Alzheimer's Association lists feelings many caregivers are afraid to say out loud: anger at the person, resentment of the demands, resentment of family who won't help, guilt for still enjoying life, and even wishing it would end. They say plainly that it's okay to feel love and anger at the same time.

Hurt counts too: when they accuse you of stealing, say something cruel, or don't know you. You can know it's the illness and still be wounded by it.

Dr. Boss calls holding opposite feelings at once ambivalence, and one of her six guidelines for living with ambiguous loss is to treat it as normal. You can love someone deeply and still wish their suffering, and yours, were over. Both can be true.

When It's Your Husband, Wife or Partner

Being a spouse or partner is linked to heavier grief before the death, according to a 2026 review of 30 studies, and one study that compared the two found spouses grieved more than adult children, especially in later stages. You may feel married but alone, sharing a home with someone who needs you in every way and can't be there for you.

Losing a confidant, a partner in decisions, closeness and touch: these are real losses. Some partners also face private questions about loneliness and companionship while their spouse is living. These are deeply personal, and a counselor, faith leader or support group of people in the same place can help you think them through without judgment.

When It's Your Mom or Dad

You may grieve the parent who used to comfort you while you're helping them dress or eat. And not every parent was easy to love. If your relationship was painful, dementia can stir up old hurts with no chance to settle them, or show you a softer parent you never knew. It's okay to set limits on what you can give. Our guide to grief after a complicated relationship may help.

Plan Together While You Still Can

This is one place where the long goodbye gives you something: time. The National Institute on Aging urges families to make legal plans as soon as possible, while the person can still take part: a durable power of attorney for health care (naming who decides) and one for finances. Rules vary by state, so a legal aid office or elder law attorney can help.

While they can still share them, ask about their wishes, too: who they'd want with them, music they love, what matters at the end. Our planning guides for patients and families and free Before the Day Comes workbook can help when you're ready. Every answer you gather now is one less guess later.

Hard Decisions and the Guilt That Follows

Memory care, hospice, stopping a treatment, breaking “I'll never put you in a home”: these bring heavy guilt. A promise made years ago couldn't know what you know now. Its heart was “I'll make sure you're cared for,” and choosing the care they need can be how you keep it.

Hospice is possible with dementia. Medicare covers hospice when a doctor certifies a life expectancy of six months or less if the illness runs its normal course. With dementia that's hard to predict, so it's okay to ask their doctor or a local hospice for an evaluation. Hospice also includes respite stays of up to five days so you can rest, and grief support for the family before and after the death. Asking isn't giving up.

If you're comparing hospices, our free Questions to Ask Before You Choose a Hospice (en español) can help you know what to ask, including how they care for people with dementia.

Help That Can Give You a Break

• Medicare's GUIDE program offers dementia care coordination, caregiver training, a 24/7 support line and up to $2,500 a year in respite for eligible people with traditional Medicare. The CMS page has a map of participating programs.
• The Eldercare Locator connects you to local respite, adult day programs and caregiver help: call or text 800-677-1116.
• Veterans' families: the VA Caregiver Support Line, 855-260-3274, has dementia caregiver help.

Finding Them in the Moment

Even late in the illness, many people still respond to music. The Alzheimer's Association notes someone may tap a beat or sing songs from childhood long after other words are hard. Try music from their younger years, holding hands, old photos without quizzing them, folding towels together, sitting in the sun. Letting go of “Do you remember?” and simply sharing the moment can ease the pressure on both of you.

Some days bring fear instead, for them or for you. Our free Sitting With Someone Who's Scared (en español) has gentle ways to be with them through it.

While they can still take part, you might record their voice telling a favorite story or singing a song, write down their recipes and sayings, label old photos together, or save a sample of their handwriting. These can comfort them now and you later. The free companion has memory pages for this.

Helping Children and Teens

Children notice when Grandma doesn't know their name. The National Institute on Aging encourages honest, simple answers. Something like: “Grandma has an illness in her brain called dementia. It makes her forget things, even people she loves. It isn't anyone's fault.” Let them ask questions, visit in short, simple ways if they want to, and share their own feelings.

Teens with a parent who has younger-onset dementia often help with real caregiving. In one study, they described embarrassment and gossip from peers, and people mistaking a parent's symptoms for rudeness. Make room for them to just be kids, and tell them their feelings are welcome.

Caring for Yourself Through the Long Goodbye

This part matters more than it seems. In a study of 217 family caregivers after a death from dementia, about 20% developed complicated grief, and those who had been most depressed and worn down during caregiving were most at risk. Caregivers who had taken part in a program that eased depression and burden had less complicated grief later (Schulz and others, 2006). Support now helps you later.

• Join a support group, in person or online. The Alzheimer's Association has groups nationwide and ALZConnected online.
• Say yes to respite, even a few hours a week.
• Keep one thing that's just yours: a walk, a friend, a few quiet minutes.
• See your own doctor, and be honest about your sleep, mood and stress.

After They Die

When death comes, many families are surprised by what they feel. In a well-known study of dementia caregivers, 72% said the death was a relief to them, more than 90% believed it was a relief to their loved one, and caregivers' depression symptoms dropped within three months (Schulz and others, New England Journal of Medicine, 2003).

Relief is not betrayal. You may also feel numb (“I already grieved”), or suddenly grieve the person they were before dementia. All of it is normal. If your grief stays heavy, please read Is This Still Grief? and our companion for when the caring ends.

When to Reach Out for More Help

Please talk with a doctor, counselor or support line if you notice weeks of feeling hopeless or empty, trouble eating, sleeping or getting through the day, pulling away from everyone, drinking more to cope, or thoughts of not wanting to be here.

Where to Find Support

• Alzheimer's Association 24/7 Helpline: 800-272-3900, for Alzheimer's and other dementias, in more than 200 languages
• Alzheimer's Foundation of America: 866-232-8484, text 646-586-5283, or chat (licensed social workers, 7 days a week)
• Association for Frontotemporal Degeneration HelpLine: 866-507-7222
• Lewy Body Dementia Association Lewy Line: 800-539-9767
• NIA Alzheimer's and related Dementias Education and Referral (ADEAR) Center: 800-438-4380
• Eldercare Locator: 800-677-1116 (call or text)
• VA Caregiver Support Line: 855-260-3274
• Ambiguous loss resources from Dr. Pauline Boss: ambiguousloss.com

More Help

• Grieving Before Goodbye: Anticipatory Grief When Someone You Love Is Dying
• Caring for Someone in Hospice
• What to Expect in the Final Days
• Helping Children Understand Hospice and Death
• When the Caring Ends: A Grief Companion for Former Caregivers
• All our free printables

Please note: This guide shares general information for comfort. It is not medical, legal or benefits advice. Please talk with your loved one's doctor, a hospice team, an elder law attorney or a counselor about your situation. Programs and rules can change and vary by state. If you are in crisis, call or text 988. In an emergency, call 911.

Download Grieving While They're Still Here free (PDF) · See all our free printables

With care,
C. Lindorfer, Noted & Charmed