When a Grandparent With Dementia Dies: Helping Kids Grieve

When a grandparent dies after years of dementia, grief can arrive in a strange shape. Many families have already been grieving for a long time, through each change and each name forgotten. Kids are no different. By the time the death comes, a child may feel deep sadness, or very little, or something that looks like relief. They may be grieving the grandparent they remember from when they were small, not the one who was in the care home last month.

All of that is normal. What helps most is honesty, permission to feel whatever they feel, and adults who stay close.

How do I tell my child that Grandma died?

Tell them soon, simply and in a quiet place, ideally from a parent or someone they trust. The Dougy Center, which has supported grieving children since 1982, advises telling kids as soon as possible and using clear words. Avoid phrases like "passed away," "we lost her" or "she went to sleep." Young children take words literally, and "sleep" in particular can make bedtime frightening.

Something like:

"I have some very sad news. Grandma died this morning. Her body stopped working because the dementia made her very sick. She isn't in pain anymore. It's okay to feel however you feel."

Naming the illness matters. The Dougy Center notes that vague explanations can leave kids anxious later, wondering whether any illness, or any forgetfulness, means someone is about to die. You can add: "Dementia is a disease that mostly happens to very old people. Forgetting your homework is not dementia."

What might kids feel?

There's no correct reaction. Some common ones after a dementia death:

• Sadness, sometimes in short bursts. Kids often cry hard for ten minutes and then ask what's for dinner. That's how children grieve, not a sign they don't care.
• Relief. If Grandpa was distressed, frightening or very ill, a child may feel relieved it's over, and then guilty about feeling relieved. Tell them adults often feel that too.
• Confusion about which grandparent they're missing. Talking about who she was before dementia can help them connect with that person again.
• Not much at all, particularly if they were young when the illness began or didn't see her often. Feelings sometimes show up later, sometimes years later.
• Regret. "I didn't want to visit." "I got annoyed when she asked the same question." Reassure them that those were normal reactions to a hard illness, and that Grandma knew she was loved.

If your family has already been talking about the "slow goodbye" of dementia, our piece on ambiguous loss covers the grief that comes before a death.

Should my child go to the funeral?

In most cases it's a good idea to offer, and to let the child choose once they understand what will happen. Children who are prepared usually cope well, and many later say they're glad they went. Children who were kept away sometimes feel shut out.

Prepare them in concrete terms:

• Where it will be and how long it will take
• Whether there will be a casket, and whether it will be open
• That people may cry, including adults they've never seen cry
• What they'll be expected to do (mostly sit quietly), and that they can step out with a trusted adult anytime

Assign a "buddy" adult whose only job is looking after your child, so you can grieve too. Bring something quiet for younger kids to hold or do.

Kids can also take part in small ways if they want: drawing a picture to place in the casket, choosing a photo for the display, picking a song Grandpa loved, or reading a short line. Those little jobs give them somewhere to put their feelings.

How do we remember the grandparent from before?

One of the gifts you can give kids after a dementia death is the rest of the story. Many children only knew a grandparent who was already ill. Fill in the picture:

• Tell stories about what Grandma was like at their age, at your age, at her best.
• Look through old photos and videos together.
• Make a memory box with things that were hers: her scarf, her recipe cards, the mug she always used.
• Cook her signature dish together on her birthday.
• If you made a memory book while she was alive, bring it back out.

You can also hold both versions at once. "Grandma was the funniest person I knew. And at the end, dementia made it hard for her to be herself. Both of those are true."

What does grief look like over the following months?

Children tend to revisit grief as they grow. A six-year-old may seem fine, and then have big questions at nine. Expect it to come and go.

The Dougy Center's general advice holds here: keep routines steady but not rigid, listen more than you fix, and let every question be okay to ask. Some practical things:

• Let teachers know, so they can watch for changes and go easy on deadlines for a bit.
• Expect regression in younger kids, like clinginess, bedwetting or sleep trouble, for a while.
• Mark the hard dates together, like birthdays and the first holidays, with something small and specific.
• Talk about Grandma normally. Saying her name keeps her in the family conversation.

Most grief, even intense grief, gradually softens. If your child's distress is severe, lasts many months without easing, or affects school, sleep or friendships in a big way, a child grief counselor or a local grief support group for kids can help. Many hospices run free programs for families, even if the grandparent wasn't in hospice care.

What to say when kids ask hard questions

Grief brings questions, and kids ask them at odd moments, often in the car or at bedtime. Some you'll hear after a dementia death: "Did it hurt?" "Did she remember me at the end?" "Where is she now?" "Are you going to die too?"

Answer honestly and briefly, then check whether they want more. If you don't know, say so. "I don't know if she remembered your name at the end. I do know she smiled when you sat with her, and I think part of her knew you were someone she loved." For questions about what happens after death, share your family's beliefs in simple terms, and it's fine to say different people believe different things. If they ask whether you'll die, tell the truth with reassurance: "Everyone dies one day, but I expect to be here for a very long time, and to look after you while you grow up."

Will they worry it will happen to them?

Some kids will, especially if the grandparent had young-onset dementia or if they've heard that dementia "runs in families." Be honest and reassuring: most dementia happens in old age, most people who have a grandparent with dementia never get it, and there are healthy habits families can share that are good for everyone's brain. Our piece on "Will I get it too?" goes deeper.

You can grieve alongside them

You don't need to have this figured out to help your child. Crying in front of them is fine; it shows them sadness is allowed in your house. Keep saying her name. Tell the story about the burnt Thanksgiving pie again. Kids grieve best when the grandparent they loved, the early version and the later one, stays part of ordinary conversation.