Exploring dementia with Professor Graham Stokes: Helping young children to understand dementia

When a loved one develops dementia, it is likely that every member of the family will be trying to cope with their own feelings, including young children. However, young children in particular may struggle to come to terms with the changes caused by the condition, and you may find them asking: “What has happened to grandma?”

In the fifth instalment of Exploring Dementia with Professor Graham Stokes, Graham, the Director of Memory Care Services at HC-One, shares some useful methods to approach the topic of dementia with young children, and gives advice on how children can still spend quality time with their loved ones.

Firstly, Graham, why is it important to have the conversation with children when a loved one develops dementia?

Most members of the family will need time to adjust to the news, but it can be particularly difficult for young children as they will not understand what dementia is, or they might find it harder to cope with their feelings.

It is natural to want to protect young children from a potentially difficult or upsetting situation, however, it is important they know what is happening. After all, relationships with people living with dementia will not and should not end. By explaining why the person living with dementia is behaving differently, children can understand the situation more easily.

When is the right time to talk to children about dementia?

Ideally, the best time is as soon as possible. Even very young children notice when something is different, and if they are not told why then they may fret and even start to think they are somehow responsible.

So, how can parents first approach the subject with their children?

It is important to explain clearly what dementia is, and to offer plenty of reassurance that people can live well with dementia.

Remember to encourage children to say how they are feeling and ask any questions they have, while reminding them that their feelings are normal, and that they can speak to you without being judged. You may find that listening is the most valuable part of your conversation, even more so than talking.

It may help to imagine the situation from the child’s perspective, as this will help you find out if they are worrying about something specific.

Of course, children who are much younger may not be able to communicate their feelings at all. What signs can parents look out for?

It is completely normal for children of all ages to experience a range of emotions. For example, they may feel confused about what dementia is and how they should behave around their loved one, or they may fear what will happen to their loved one in the future. Some children may even worry that they, or other members of the family, might catch dementia.

However, very young children may not be able to communicate that they are feeling upset and worried at all. Therefore, the following signs may be useful to look out for:

 .        Being sad and weepy.
 .        Withdrawing from the situation by being quieter than usual or retreating to their bedroom.
 .        Possible symptoms of anxiety, including nightmares, difficulty sleeping, poor behaviour, loss of appetite, feeling or being sick, or constantly feeling tired.
 .        A deterioration in their schoolwork, as some children may find it harder to concentrate.
 .        Not wanting friends to come over if the person living with dementia lives in the same house as them.
Thank you, Graham. In the instance that children are in fact asking a lot of questions, what is your advice to reassure them and help them understand?

My first piece of advice is simple: answer questions honestly. Explain as clearly and calmly as possible, at a level that a young child can understand, and acknowledge that things are happening that might seem strange.

Here are a few scenarios that families may come across, along with some guidance about what to say to young children:

.       If the person living with dementia cannot remember who someone is, explain that the child remains special to their Relative, who will still enjoy seeing them.
.       If the person repeats stories and questions, explain that dementia is affecting the part of the brain that helps people remember, so they may forget what they say within moments. However, the person will often remember events that happened years ago, because these historical memories have been thought about hundreds of times and therefore take longer to lose.
.       If the person is getting bad-tempered and impatient, explain that they might not be able to do some of the things they used to, which can make them frustrated. Make sure the child knows this is a symptom of the person’s dementia, rather than how their Relative feels towards them.
.       If the person does not want to play anymore, explain that dementia makes it difficult to concentrate on activities like counting and reading, but there might be different ways they can spend quality time together.
.       If the child is worried that dementia is something they can catch, explain that some people develop it as they get older, but you cannot catch it.
.       If the person eventually moves into a care home, explain this is because the person is becoming more forgetful and muddled, so they require additional support. They are moving into a care home where people are properly trained to look after them, to help with the things they find difficult and to keep them safe. Last but by no means least, you can let young children know that, if it’s possible, simply being with their loved one and showing them love and affection is one of the most important things they can do.

What other support and resources are there to help families and young children to understand dementia?

There is plenty of support available to help families understand dementia and adjust to a loved one developing the condition. There are also several websites that are aimed specifically at helping to educate children, including Dementia UK and Dementia in My Family. By helping young children learn about dementia, it may make them feel more comfortable talking about it.

In addition, it might also be worth letting your child’s school know what is happening, so they are aware of the situation and understand the challenges the child may be facing.

And finally, what can families do to help children get the most out of visits with their loved ones?

First and foremost, try to make sure the time children spend with their loved one is pleasurable. This is important because for the young child, they are making new memories.

Before your visits, it is a good idea to be aware of the things the person with dementia may find upsetting or confusing. Be prepared to provide reassurance if these things occur when a young child is present and talk to them afterwards to help them understand why it caused a reaction.

During the visit, talk to the person with dementia in a way you want the child to communicate with them. After all, young children often learn by example.

To help the child adjust, you could also involve them in the person’s care, if they are interested in helping. They may find there are aspects of caring that they find fulfilling, which may help them feel more included.

Finally, at any stage of dementia, the person can still hug the child or hold their hand, if that feels right. These can all be good ways of reducing fear, reassuring the child, and maintaining a positive relationship.

A short case story: David and Alice

David did next to nothing all day. He had settled into a sedentary lifestyle remarkably quickly, but at 15:25 there was something he had to do and he never forgot. Yes, he had to be prompted by the alarm, but thereafter you could set your clock by him.

Alice, who was only eight, was at primary school and needed to be picked up at the end of the day. Without fail that is what David did. The alarm would sound, and David would leave the house. He would walk down the road, turn left at the junction, and walk to the end of the cul-de-sac where his daughter would soon be running through the playground to the school gate. Together they would return hand in hand. It was touching to see, and he never let her down. Dementia was not going to stop him being a dutiful father.
 
Professor Graham Stokes: an expert in memory care

Professor Graham Stokes is a clinical psychologist with more than 30 years’ experience in dementia care. He is one of the most influential people working in dementia in the UK and has been involved with many leading initiatives in his field. In his previous article, Graham explored how to recognise the early signs of dementia, which you can read here.
 
Memory care at HC-One

Many of our homes at HC-One offer dedicated memory care services for Residents living with dementia. Our Colleagues are specially trained to care and understand the needs and aspirations of each individual living and to provide them with the kindest possible care and person-centred support. We also have homes offering nursing care for older people living with dementia, who have additional health needs that require care and support from qualified nurses.

For more information about homes in your area, please contact our friendly Careline team on: 0333 999 8699