Advice

Talking to younger family members about changes in a person’s dementia

Question:

We told my eight- and 12-year-old kids about Mum’s dementia when she was diagnosed. Now her symptoms are more noticeable, what can I say to help them deal with this?

Answer:

It’s helpful that you spoke to your children about your mum’s dementia diagnosis.

As her condition progresses, they’ll probably notice more changes. These could be in how she behaves and what she’s able to do with them.

Changes in behaviour

Perhaps there’s something new that your mum has begun to do. This could include becoming confused about who people are or where she is.

She might feel anxious or frustrated when this happens. That could also affect her behaviour. For example, she might ask repeated questions or become agitated.

These changes can be particularly confusing and upsetting for children and young people.

Talk to your kids about how dementia is causing these changes in your mum’s behaviour.

Children might think they’ve done something wrong to cause the changes. Make sure they know they’re not at fault.

Encourage them to share their thoughts, feelings and questions with you.

They might feel embarrassed about some of the things she does. Or they might feel bored or annoyed by repeated questions. Reassure them that it’s OK to feel sad, confused or frustrated.

Changing relationships

Your mum may not be able to do the same things that she used to do with your kids.

They could feel a mix of loss, anxiety and other emotions as they adjust to this. They might also worry about future changes.

Reassure them that your mum still loves them and focus on what she can do with them. Emphasise the importance of spending time with her so they can show her they care.

By doing things with your mum and talking with her, they are helping the whole family to support her.

Answer their questions honestly, using language they’ll understand.

Don’t be afraid to use humour if it feels appropriate. Laughing together can help sometimes.

Things to say

There’s no one ‘right thing’ to say. Different children and young people will be reassured and helped by different things. 

However, here are some ideas:

• Explain the changes: ‘Grandma’s illness is making it harder for her to do some things. She might seem different or confused.’
• Be honest but gentle: ‘It’s normal to feel sad or upset about the changes in Grandma.’
• Reassure them: ‘Even if Grandma doesn’t always remember us, or if she says unkind things sometimes, she still loves us very much.’
• Encourage questions: ‘If you have any questions or feel worried, you can always talk to me.’
• Highlight the positive: ‘We can still enjoy today and make happy memories with Grandma.’
• Provide support: ‘It’s OK to feel sad, angry or confused. I’m here to help you through it.’