Telling the Children (Alzheimer's SA)

Alzheimer’s South Africa
Advice Sheet

TELLING THE CHILDREN

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TELLING THE CHILDREN

When you are upset about a loved one’s dementia diagnosis, it is easy to forget how anxious and
confused the children may feel. Children need clear explanations and plenty of reassurance so they
can cope with the changing situation. Though the facts are upsetting, it may be a relief to know that
their loved one’s unusual behavior is part of an illness and not directed at them.

Ensure that your explanations are at the level of the child’s age and understanding, but always try to
be as honest as possible. It’s more upsetting for children to find out after the fact as you will lose
their trust. They will cope better with the truth, however unpleasant, with your support.

Explanations

Children may need explanations repeated frequently, so be very patient.
Encourage questioning and listen to their concerns to establish what may be worrying them.
Give them plenty of reassurance, hugs and cuddles at the right time.
Use practical examples, such as your loved one forgetting an address, getting words mixed up or
wearing a hat in bed, to help them understand the situation.
Use humour to laugh at the situation together, however, do not laugh at your loved one.

Children’s Fears

Your children may need encouragement to show their feelings as they may worry about
upsetting you.
Young children may believe they are responsible for the illness because they were naughty or
had bad thoughts. Older children may worry that the dementia is a punishment for something
their relative did in the past, or that they themselves or other relatives could also develop
dementia. In all instances, the children will need reassurance.

Compiled by Alzheimer’s South Africa
KZN Region: 26 Scott Road, Pinetown 3610

Tel: + (27) 31 702 8811
[email protected]
www.facebook.com/alzheimerskzn/

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Adaptation

It is important to remember that when someone develops dementia, everyone in the family is
affected. Children need to know that you understand the difficulties they face and that you still love
them, even though you may be irritable or have a little less time for them. Try to ensure that you
make time to talk to your children without interruption. Difficulties they may wish to discuss
include the following:

Grief about what is happening to their loved one and anxiety about their future.
Teenagers may experience fear, boredom, irritation or embarrassment at their loved one’s
behaviour, combined with guilt.
Having to take responsibility for someone who once was responsible for them.
Feelings of loss due to lack of communication from their loved one, or a sense that things are
not the way they were.
Anger due to stressed family members who have less time for them than before.

Expressing Feelings

Each child will react and show distress differently.

Increased reassurance will be required when behaviour becomes attention-seeking or naughty,
sleeping habits change (increased nightmares and difficulty in sleeping) or with the development
of inexplicable physical pain.
Schoolwork tends to suffer during heightened anxiety, so communication with the school is very
important.
Some children will appear brave and cheerful on the surface, but may well be internalising it.
Encourage them to express their feelings.
Other children express deep sadness and cry readily. These children need a great deal of
attention over a long period. Try to find time every day to talk things over.

Compiled by Alzheimer’s South Africa
KZN Region: 26 Scott Road, Pinetown 3610

Tel: + (27) 31 702 8811
[email protected]
www.facebook.com/alzheimerskzn/

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Teenagers may find it hard to cope due to all the other changes and concerns in their lives, so
may retreat to their rooms or stay out more than usual. They will need reassurance that you love
them and understand their feelings. Calmly talking to them may help address some of their
worries.

Involving the Children

Find ways to involve your children in the care and stimulation of their loved one without giving
them too much responsibility or taking up too much of their time. It is important to encourage
your children to continue with their lives.
Emphasise that spending short periods of time with their loved one showing love and affection
is the most important thing they can do (try and ensure the time spent is pleasant – e.g. going for
walks, playing games, making a scrapbook of past events or putting together a memory box of
sentimental items).
Talk about your loved one as they were and show your children photographs and mementos.
Take photographs of your loved one with your children to remind you of all the good times,
even during the illness.
Don’t leave your children alone in charge, even for brief spells, unless you are certain they are
happy to do this and can cope with the situation.
Praise your children for their efforts.
Tell the children how proud their loved one is of them even though they may not be able to
express themselves.

Compiled by Alzheimer’s South Africa
KZN Region: 26 Scott Road, Pinetown 3610

Tel: + (27) 31 702 8811
[email protected]
www.facebook.com/alzheimerskzn/