How to explain a grandparent’s dementia to a child

“Mum, why did Granny call me Tina today?”

The question comes in the car, on the way home from the Sunday visit. Tina is his mother’s name. Her eight-year-old son says it in passing, eyes on his phone, as if he is not really that interested. But the mother at the wheel knows that he is. And she knows she has been waiting for this question for a while, and at the same time wishing she would never hear it. Because she herself does not yet know how to say what is happening to her mother. The diagnosis is three months old. The word “dementia” has not yet been spoken aloud at home.

In this post I will write about how to explain to a child that their grandmother or grandfather has dementia — what to say, how to adapt it to their age, how to keep in touch, and what happens in the family along the way. I will not write about how to recognise dementia and what to do after a diagnosis; there is a separate post on that, Dementia in the family: the first signs and the first steps.

Children know more than we tell them

Parents often hope that a child will not notice the changes in their grandparent, or that they will notice but not understand, and so will be less hurt. The experience of family therapists suggests almost the opposite. Children notice very early: that Grandad tells the same story three times, that Granny does not know what day it is, that Mum locked herself in the bathroom after a phone call. They do not only notice the grandparent. They notice their parents too.

When a child notices that something is going on and nobody explains it, they fill the gap themselves. And a child’s explanation is often worse than the truth. “Granny doesn’t like me any more.” “Mum is angry with me.” “Maybe I did something.” “Maybe this will happen to Mum too.” Silence does not protect a child from feelings. It only protects them from the information that would help them understand those feelings.

In systemic family therapy, the approach I am training in, we often repeat Paul Watzlawick’s idea that it is impossible not to communicate. Even what is not talked about tells a child something: that it is dangerous, that it cannot be borne, that it is better not to ask.

What dementia is — in words a child can understand

Dementia is not a single illness but a collective name for several brain diseases that gradually affect memory, thinking, speech and behaviour. The most common is Alzheimer’s disease. According to the World Health Organization, more than 55 million people worldwide live with dementia. That means that in almost every class at school there are a few children who have a grandparent at home to whom this is happening — even if nobody talks about it.

A child does not need medical details. They need an explanation that is true, simple and that they can repeat themselves. For example:

“Granny has an illness called dementia. It is an illness of the brain. Because of it Granny forgets things, sometimes mixes up names and sometimes gets confused about where she is. She doesn’t do it on purpose. The illness isn’t catching, and nobody caused it — not you and not me.”

With younger children it helps to link the explanation to something they know: the brain is like a big library in which Granny sometimes cannot find the right book. With older children you can say more about what is happening in the brain and that the illness will get worse over time. A teenager deserves an honest conversation, including about what lies ahead.

Three things a child needs to hear

Whatever their age, there are three messages children almost always need when someone close to them is ill — even if they do not ask out loud.

“It isn’t catching.” Younger children often think an illness can be “caught” like a cold. Some start avoiding their grandmother because of this, while others worry that they will get ill themselves or that Mum will.

“It isn’t your fault.” Children, especially pre-schoolers, are at the centre of their own world and often explain the things that happen as the result of their behaviour. If a child was being loud when Granny forgot where she was, they may conclude that they caused her confusion. This needs to be said explicitly, not just hinted at.

“You will be looked after.” When something changes in the family, what a child really worries about most is what it means for them. Will Mum still have time? Will we still go to the seaside? Who will pick them up from nursery if that used to be Granny? They deserve concrete answers to these questions, even if the answers are simple.

It also helps to tell a child that every feeling about this is all right — sadness, fear, anger, shame, even relief when a visit is over. Children who can name their feelings find them easier to carry. You can read more about this in the knowledge base under emotional literacy, and for younger children the short exercise name the feeling is useful.

How the conversation might sound

This is how the conversation in the car might continue (composite, not a real person):

“Granny called you Tina because names get mixed up for her sometimes now. She has an illness called dementia.”
“What’s that?”
“An illness of the brain. It makes Granny forget things. Small things first, then bigger ones.”
“Will she forget me too?”
Mum is silent for a moment. “Maybe one day she’ll forget your name. But when she sees you, she’s happy. You can see it on her face — did you notice?”
“Yes. She was laughing.”
“The illness doesn’t take that away so quickly.”
“Will you get it too?”
“I’m healthy now. And if you ever have a question — even a strange one — you can always ask me.”

Mum did not say everything. She did not say that Granny will one day die, and she did not explain heredity. But she told the truth to the extent the child could manage in that moment, and she left the door open. The hardest question — “Will she forget me too?” — did not get false comfort, but a true answer that still left room for hope.

If a child asks whether their parent will get dementia too, you do not have to promise it will never happen. It is enough for them to know that their parent is healthy now and that they will be told about everything. The question of heredity belongs with a doctor, not at the kitchen table.

When Granny is no longer like herself

For children, forgetting is often the easiest part. It is harder when behaviour changes. Dementia can bring irritability, suspicion, restlessness, crying for no obvious reason, and sometimes harsh words or pushing away. A grandmother who always baked biscuits and read fairy tales may suddenly snap at a child for playing too loudly.

What helps a child then is knowing in advance that this can happen, and hearing that it is the illness talking, not Granny. “When Granny is confused, she sometimes gets frightened. When people are frightened, they can get angry. She isn’t angry with you.” It also helps if the child has permission to step away: to go into another room, play outside, or say they would like to go home.

If the ill parent’s behaviour means the child is not safe with them or is afraid of them, visits do not have to be forced. A child’s safety comes before how things “ought to be”. Contact can be kept up in other ways: with a drawing, a short video, a photograph that the parent takes along on a visit.

A child in a family that is caring

When someone in the family develops dementia, it is not only the relationship between the child and the grandparent that changes. The whole family changes. A parent who is caring for their own mother or father is more tired, more absent, and often grieving quietly. Research on families caring for a relative with dementia at home has shown that this also touches the relationship between parents and teenagers — children notice that their parents are more burdened and less available, and the atmosphere at home changes too.

Children respond to this in different ways. Some become unusually good and quiet, so as not to be one more burden. Some start looking after their parent — comforting them, making them tea, asking whether they are all right. Some become loud and angry, and start struggling at school. All of these are ways a child signals that the system is under pressure.

The first response calls for particular attention. When a child takes on responsibility for the adults’ feelings for the long term, we speak of parentification. A small way of helping Granny — passing her a glass of water or showing her a drawing — can give a child a sense of being useful. But when a teenager stands in for an absent parent in giving care, or becomes their mother’s main confidant, a line has been crossed. It is good for a child to hear: “Thank you for helping me. But the grown-ups will take care of Granny and of me.”

If part of the care moves into your home, all of this intensifies; I have written about what home care does to family relationships in the post Caring for a parent at home: what it does to your relationship.

How to stay in touch

One of the things parents want most is for their child to keep a good memory of their grandparent, and for the relationship not to disappear before it has to. That is possible — but the relationship will change.

In a Spanish study in which teenagers were asked about their relationship with a grandparent with dementia, the young people of course described loss. But alongside it they also described things that had remained in the relationship or had even grown anew: patience, tenderness, a sense that they could give something. The relationship had not necessarily ended. Its form had changed.

As memory and speech fade, other paths remain: music, touch, smell, movement, pictures. People with dementia often remember old songs when they no longer remember what they had for lunch. Singing together, looking through an old album, a walk round the garden, folding laundry or sorting buttons can all be activities in which child and grandparent are together again — without the pressure of having to remember anything.

Exercise: a box for Granny

You can do this with your child this week. It suits children from nursery age upwards, and a teenager can do it in their own way — as a playlist or an album on their phone.

1. Find a box and decorate it together. Let your child decide how it will look.
2. Collect things in it that can be shared with Granny without words: a few old photographs, a recording of a song Granny used to sing, a piece of fabric that smells nice, a drawing.
3. With each item, ask your child what it means to them. “Why did you choose this photo?” That way the conversation about Granny happens through memories, not through the illness.
4. Take the box with you on the next visit. Let your child decide what to show her. It does not matter whether Granny remembers the photograph — what matters is that you look at it together.
5. Talk after the visit about what was nice and what was hard. If your child was frightened or saddened by something, tell them it is understandable, and think together about what you might do differently next time.

The box has another purpose that a child does not notice straight away. When Granny dies one day, it will remain — as proof that the relationship was real even when Granny was ill.

Grief that begins earlier

With dementia, grief does not begin at death. It begins much earlier — when Granny first fails to recognise her grandchild, when Grandad can no longer play the card game he played all his life. Pauline Boss called this ambiguous loss: the person is physically present but psychologically leaving. Such a loss is hard for adults, because it has no clear beginning, end or ritual.

It is the same for children. Perhaps even harder, because they have no words for it. It helps to offer them some: “It’s sad when Granny doesn’t know who you are any more. It makes me sad too. We can be sad and love her at the same time.” In this way a child gets permission to grieve for someone who is still alive — and to go on loving them at the same time. You can read more about how such a loss is experienced in the posts Grieving someone who is still alive: dementia, addiction, estrangement and Anticipatory grief: grieving before the death, and a short explanation in the knowledge base under grieving.

When the time comes to tell your child about death as well, the post How to talk to a child about death – by age may help. Children who have had the chance to say goodbye to their grandparent gradually often meet the death with less shock — though not necessarily with less sadness.

When this advice is not enough

I want to be honest here, because no advice fits every family.

Not every child is the same. Some children want to know everything, others almost nothing. Some want to visit Granny every week, others are afraid of her. None of these responses is wrong. Your task is not to lead your child to the “right” response, but to stay available.

Sometimes a child’s distress is not only about Granny. If for several weeks your child is sleeping badly, has frequent tummy aches, withdraws from friends, falls behind sharply at school, or says it would be better if they did not exist, it is right to consult your child’s paediatrician or the school counselling service. This is not a sign that you have done something wrong. It is a sign that your child needs more than a conversation at home can give.

Sometimes it is the parent who cannot manage. It is hard to explain to a child an illness you have not yet accepted yourself. If you find that you fall silent or burst into tears at every question your child asks, that is not a failing — it is a sign that you, too, need space for yourself. The ill parent’s GP, the social work centre and the community nursing service are the first places to go for practical help with care in Slovenia, and the association Spominčica – Alzheimer Slovenija offers information and support to relatives of people with dementia. I will not list rights and conditions here, because they vary — what matters is that you know where to ask.

And sometimes the story is more complicated. If your relationship with the parent who is now ill was difficult for you, or if you and your siblings disagree on what to do, your child will sense it. Then it can make sense to look at the situation as a family. In family therapy, which I offer in person in Ljubljana as a therapist in training under supervision, and also to English-speaking families, we often look together at how the illness has shifted roles in the family and where someone has been left alone. As with other difficult news I have written about in the post How to tell your children that their parents are separating, the same holds here: children do not need perfect parents, but parents who dare to talk about hard things.

What to remember

• Children notice changes in a grandparent early — silence does not protect them, it only leaves them alone with their own explanation.
• The explanation should be true, simple and suited to their age; details can come later.
• Three messages: it isn’t catching, it isn’t your fault, you will be looked after.
• The relationship can be kept alive through music, photographs, touch and shared activities — not through asking “do you remember?”.
• A child may help, but must not become a carer; looking after Granny and after the child remains the adults’ job.