Dementia - advice for families

Although most people with dementia are older adults, there are often young children and adolescents in the household, or close by, who are strongly affected by the illness of someone they love. It may be their grandparent who is affected or, in the case of younger-onset dementia, their own parent.

At a time when they are already trying to cope with growing up, they find that they also have to cope with a family member who is ill.

Talk openly and listen#

The most important way to help children or grandchildren cope with a family member or someone close to them who has dementia is to talk openly and be willing to listen. They need the chance to ask questions and express their feelings without fear of a negative reaction.

Remember that young children may not be able to take in too much information at once. Keep it simple and try to answer their questions at their own level.

Adolescents are often good at expressing themselves and their feelings, but do not be surprised if they do not start the conversation. Watch for clues in their behaviour that something is on their mind, and then try to talk openly.

Some young people may find it hard to talk with their parents because they do not want to worry them, are afraid of making them sad, or do not want to be an extra burden. They may prefer to talk to people of their own age or to a counsellor.

How young people react#

Young people will react to dementia differently depending on:

• how often they interact with the person
• their age and stage of development
• their personality
• how important the person with dementia is in their lives

They may ask questions such as why the person is angry or why things cannot be the way they used to be. Like adults, they may feel a wide range of emotions, including fear, guilt, denial, jealousy, resentment, frustration, anger, sadness, tension or stress, embarrassment, an overwhelming sense of responsibility, an unwillingness to take responsibility, helplessness, or despair and hopelessness.

Helping young people cope#

You can help young people cope with their feelings about dementia if you:

• Let them know they are cared for, and acknowledge that this is tough on them too.
• Give them permission to say what they really feel, and do not be afraid of their feelings or your own.
• Help them confront and deal with their worst fears. Sometimes these fears may be unrealistic, but they are very real to the child.

Try to keep family structure#

Continue to do some of the things you used to do as a family, as this gives children a feeling of security and self-confidence. Try to spend some time with each child every day, where they have your full attention.

Make family plans and carry them out#

Continue even if there is not much enthusiasm for your suggestions.

Use respite care to give everybody a break#

Encourage teenagers to get on with their own lives and make their own plans.

Deal with conflicts and problems#

Do not ignore them. Set aside special times when the family can discuss responsibilities and problems, but try not to let ‘helping’ become the only focus.

Keep the school informed#

Tell the child’s teacher or school counsellor that there is a serious illness in the family. Check in with the school from time to time to see whether the child has had any problems. Schools may also have resources that help young people learn about dementia.

Carers need to look after themselves and reassure children that they will not get sick too.

What young people can do#

If you are a young person wondering how to help, safe, simple and quiet activities that involve repetition are best for people with dementia.

Many people with dementia can remember things from long ago but not things from a few minutes ago. You might look at a family photo album together or play music they may remember. The person may only be able to concentrate for a short time, so stop or change what you are doing if they become anxious or distracted.

Even if they no longer recognise you, your love and understanding can be a great comfort. Give them a hug, a kiss or stroke their arm. The best help you can give is reassurance and letting them know that you care about them.

Other things young people can do to make life easier for the person with dementia include:

• Learn all you can about the disease.
• Be calm and patient.
• Be involved.
• Be understanding.
• Treat the person with dementia with respect. Do not correct what they say, even if it is wrong or mixed up.
• Help around the house.

Explain the situation to friends so they know what to expect. Remember that all the feelings you have are normal and OK. It is very hard to watch someone you love, and who loves you, forget who you are and lose their independence.

Try to remember that even if the person becomes angry, cries a lot or does strange things, it is because they have a brain disease and cannot help what they are doing. Do not blame yourself for their behaviour.

Where to get help#