In plain English
Children and grandchildren cope better with honest, age-appropriate explanation than with sensing something is wrong and not knowing. This page sets out how to talk about dementia at different ages.
The principle
Children and grandchildren are usually more resilient and adaptable than adults expect. The thing they find hardest is sensing something is wrong but not understanding it. Age-appropriate explanation, by someone they trust, is reassuring and lets them stay connected with the person with dementia.
What to say at different ages
Under 5
Simple, concrete, present-tense:
"Grandpa has an illness in his brain. It makes him forget things. He still loves you very much. Sometimes he won't remember your name; you can tell him."
Keep visits short and predictable. Familiar games and books work well. The child does not need to "understand" dementia; they need to feel safe.
Ages 5 to 8
Still concrete, can add a little more:
"Grandma's brain has an illness that makes it harder to remember things and harder to do some things she used to do. She still loves you. It's nothing you did or can catch. We will help her, and sometimes you can help too."
Encourage simple shared activities: looking at photos, simple games, drawing pictures, helping with tea.
Ages 9 to 12
More information; allow questions:
"Granddad has dementia, which is an illness of the brain. It usually gets a bit worse over time. The doctors are looking after him. We may sometimes need to do things differently because of it. You can ask any questions you want."
Books written for this age group (the Alzheimer's Society publishes them) help.
Teenagers
Treat as adults with sensitivity:
"Mum has been diagnosed with Alzheimer's Disease. The doctors think it's mild at the moment. There are treatments that can help, and lifestyle changes too. We will need to make some adjustments at home over time. I want you to know what's going on, and I want to keep talking about it."
Teenagers often feel responsible without being equipped. Give specific tasks they can take on without making them the primary carer.
Common reactions
Withdrawal
Children may withdraw from the person with dementia, particularly as the relationship changes. Reassure that this is not their fault, and find ways to maintain connection (a short visit, a phone call, a shared activity).
Embarrassment
Teenagers in particular may feel embarrassed by visible symptoms. Acknowledge the feeling, do not judge. Suggest activities that suit the current stage.
Anger or sadness
Both are normal. Allow them. Avoid forced positivity. A young person who can express sadness is doing better than one who buries it.
Worry about themselves
Older children sometimes worry about their own risk. Reassure honestly: most dementia is not directly inherited. For familial cases, age-appropriate genetic counselling is appropriate when older.
Activities that work
- Looking at old photo albums together;
- Familiar songs;
- Simple games;
- Helping with simple chores (folding laundry, dusting);
- Reading aloud;
- Outdoor walks;
- Drawing pictures and writing letters.
Activities that worked at younger life stages of the relationship often still work, even when the person cannot reciprocate fully.
Maintaining the relationship over time
The relationship will change. Children grow; the person with dementia changes. Practical tips:
- Keep visits a regular feature, even when they seem to have less impact;
- Let children record short messages or videos to play to the person;
- Bring photographs of the children's lives to share;
- Tell stories about the person's earlier life when the children were younger;
- Mark important family events with the person where possible.
When the child is also a carer
Some children and young people take on caring responsibilities. Young carer support is available:
- Carers Trust Young Carers services;
- The Children's Society Young Carers Initiative;
- Local young carer assessments by social services;
- School pastoral support.
Young carers should not be the primary carer for someone with dementia; their own development needs come first.
When the person with dementia dies
Children's grief is real and often expressed differently from adults. Give them honest, age-appropriate information, allow them to attend the funeral if they wish, and provide ongoing space to talk. Cruse Bereavement Support (0808 808 1677) has resources for children and young people.
Frequently asked questions
Should we hide the diagnosis from young children?
Generally no. Children sense something is wrong and cope better with honest, age-appropriate explanation than with confusion or secrecy.
Should the grandchildren still visit?
Yes, where possible. Regular short visits are usually more useful than long, infrequent ones. Familiar activities work well.
What if my child is upset by their grandparent's behaviour?
Acknowledge the feeling. Explain that the behaviour is due to the illness, not the person. Adjust visit length and activity to the stage.
Will my children inherit dementia?
Most dementia is not directly inherited. Where there is a clear family history of young-onset dementia, genetic counselling is appropriate when the child is older.
Are there books for children?
Yes. The Alzheimer's Society publishes age-appropriate books and resources for children and young people about dementia.
References
- Alzheimer's Society. Talking to children and young people about dementia.
- Dementia UK. Children and young people.
- Carers Trust. Young carers.
- Cruse Bereavement Support. Children and young people.