Talking to children about Dementia

Children in dementia-affected families

When dementia is in your family, it can be hard to know how to support children, grandchildren or other young people.

Young people often witness the memory, thinking, mood and behaviour changes in someone they love who lives with dementia. It can be confronting for them, and hard to understand. Their relationship with that person will change. They may even become involved in caregiving.

Children tend to know when something isn’t right, even when they haven’t been told. Whether you’re a carer or you have a diagnosis, you might be feeling more stressed, anxious or frustrated than usual. Perhaps you’re struggling with sadness and exhaustion. You might find you’re less patient than usual.

Children express grief and distress differently to adults. They will often move in and out of intense feelings, rather than sustain high levels of an emotion for a long period of time. It’s easy to assume that a child who is happily playing is ‘over it’ or unaffected. But this is a common misconception.

Children often react to sad news in ways that adults might not expect or struggle to understand. Below is a list of common reactions in children according to age, and how you can help them.

Babies and toddlers

Common reactions

• Crying more
• Clinginess, wanting to be held
• Irritability

How to help

• Keep to normal routines
• Hold and cuddle them more, provide comfort items (blanket, dummy)
• Be calm around them, talk calmly

Pre-school to 8 year olds

Common reactions

• Clinginess, irritability
• Bed wetting
• Changes in eating
• Changes in sleeping

How to help

• Start to teach them words to describe how they are feeling (‘sad’, ‘worried’)
• Remind them that they are safe and looked after
• Keep to routines as much as possible
• Encourage play
• Provide cuddles and comfort items

9-13 year olds

Common reactions

• Can be especially anxious about the safety of family members
• Feel strong emotions such as anger, guilt, resentment, rejection
• May feel embarrassed and wish to conceal things from their friends
• Want to take on more adult responsibilities
• Retreating to introverted or solo activities

How to help

• Avoid expectations of adult behaviour, allow them to be children
• Provide regular encouragement
• Have honest discussions about what is happening
• Let them know that you understand what they are feeling and that it’s ok
• Explain that illness is a part of life, use examples of nature or animals
• Encourage routine and normality for them
• Allow them to be involved in caring for the person with dementia as appropriate

13+ year olds

Common reactions

• Withdrawing to be alone
• Feelings of embarrassment, wanting to conceal things from their peers
• Having difficulty in expressing what they are feeling or having conflicting feelings
• A change in academic performance, being more distracted in class
• Behaving as though they don’t care
• A sense of loneliness
• Wanting to take on more adult responsibilities
• Wanting to take on less adult responsibilities
• Feeling guilty about planning for their future
• Not wanting to spend as much time at home
• Being irritable, resentful

How to help

• Be honest and keep them informed of what’s happening, take time to answer their questions
• Be willing to listen, even if you don’t like what they have to say
• Keep routines and activities going as much as possible
• It can be helpful to share with the teenager how you are feeling, particularly if you’re feeling the same way
• Allow them to be their age and not take on too much adult responsibility
• Have open conversations with a trusted teacher at school about what is happening in the family
• Encourage them to identify trusted people they can talk to
• Provide ongoing reassurance and support. It’s not uncommon for things to surface later on
• Encourage them to think of things that make them feel okay: reading, singing, listening to music, exercising, talking with friends

Talking to children about dementia

Children are particularly perceptive to changes in their family. They are sensitive to sadness and distress in their parents and other adults in the family.

Children often blame themselves for distress in a parent. They almost always assume that somebody is upset because of something they did, unless they’re told differently.

Likewise, as care requirements change, a child may misinterpret the reason for this. For example, if a parent is now required to assist a grandparent with shopping on Saturday mornings, when they used to take their child to sport, the child may interpret this change as:

‘My parent isn’t coming to my sport because they don’t love me as much anymore. I must have done something wrong.’

This is why it’s essential to communicate with children about somebody in the family having dementia.

Providing children with information about dementia, and what will change as a result, allows them to understand and adjust to the new situation.

Children are often more resilient than we think. They can handle challenges with their tendency for black and white thinking.

Starting the conversation

Many parents start the conversation with a young child using a story book. There are many books for children about a family member with dementia. These books can be read by a parent and a child together and followed by a discussion about your family member having the same illness as the person in the story.

Generic books about illness, change and death can be helpful for children too. Even if the book isn’t about dementia, it can be a helpful conversation starter. You will find links to suggested reading in the Dementia Australia Library.

Parents of older children often find it helpful to start with a reference to a change they might have noticed. For example:

‘You know how dad has had to stop driving? Well, that’s because his doctor has told us that he has an illness called dementia.’

Providing an example to explain a recognisable change is a great way to help a young person make sense of what’s happening.

Using clear, accurate language

It’s best to use simple, honest and consistent language with children.

If they are hearing them for the first time, terms like ‘dementia’ or ‘Alzheimer’s disease’ are less likely to have negative connotations for children than for adults.

An example of this might be:

Adult: ‘Grandpa has got an illness called dementia.’

Child: ‘What does that mean?’

Adult: ‘It’s a type of illness that means his brain isn’t working the way it used to. And that there are some things he can’t do anymore, or some things that he does differently now’.

Naming the condition means you can refer to it later, when they notice symptoms:

Child: ‘Why does grandpa keep thinking I’m in Grade 2? I’ve told him I’m in Grade 4.’

Adult: ‘That’s because of his dementia. It affects the way his brain remembers things’.

For more general advice on appropriate dementia language, visit Dementia Australia’s How to talk about dementia page.

Answering hard questions

You might be surprised by some of the big questions that children ask when they learn that someone in the family has dementia.

For adults, the questions might seem selfish or inappropriate, but it’s normal for kids to focus on how things impact them directly. They might ask:

• Will I get it too?
• Can I still have my birthday party this weekend?
• Will I have to share my bedroom when Nan moves in?
• Will he still come and watch me at athletics?
• Is it like cancer?
• Will she forget who I am?
• Will he/she die?

It’s important for children to know that dementia is not contagious: they can’t ‘catch’ it from their loved one.

Similarly, genetically inheritable forms of dementia are very rare. Most families will not have to explain genetic risks to children. However, for the small minority that have been informed that there is a genetic link in the family, specialist genetic counselling services exist to provide support and guidance for managing these discussions.

For more on heritability and dementia, visit Dementia Australia’s genetics and dementia page.

Explaining that dementia is progressive means children are prepared for what lies ahead. It might help to inform them that ‘doctors don’t yet know how to make dementia go away yet, and people’s brains get sicker and sicker with time’.

Dementia Australia has a whole section of its site designed for children to learn about dementia alongside their parents or guardians: visit dementia in my family.

To listen to stories about how family relationships change and strengthen after a dementia diagnosis, listen to the ‘Hold on to family’ episode of the Hold the Moment Podcast.

Family relationships and dementia webinar

Jane Smith has worked as a family therapist for over twenty years. In this video, she talks about the impact of dementia on family relationships, communication, and grief, including grief in young people.

Dementia Australia support

When I was diagnosed with Alzheimer’s (disease) I had never been so scared in my life […] I am happy to say that I have received amazing support from my family, medical team and Dementia Australia.

- Linda, living with young onset Alzheimer’s disease

Whatever your experience of dementia, we're here for you. You can contact the National Dementia Helpline any time of the day or night for information, advice and support.

Where to get help

• Your GP (doctor)
• National Dementia Helpline, Dementia Australia Tel. 1800 100 500
• NDIS: the National Disability Insurance Scheme: available if you're diagnose with dementia when you're under 65.
• My aged care: support in navigating decisions around aged care.
• Carer Gateway: Emotional and practical services for carers
• Dementia Behaviour Management Advisory Service (DBMAS): 24/7 advice for people caring for someone with dementia