Seventeen Questions that Children Ask about Dementia
And thirteen questions they may not ask.
Answering children’s questions about dementia can be difficult if you are at a loss yourself. Every dementia is different as the person with it is different. And every child is different.
I have tried to predict questions that children may ask about dementia and give general responses. You can add the individuality.
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This is the title of a poem and ebook written to engage children and gently open the door to frank discussion. Written in a fun way, it raises issues that the child may want to ask about but does not know where to start. Explain that Granny’s memory is not working. She may remember things that happened long ago but new memories are not being stored.
What does dementia mean? What happened to cause it?
Dementia is brain damage. There are different causes, the most common being Alzheimer’s Disease and strokes (vascular dementia). However, the most important pat of any dementia is the person who has got it! They will have different symptoms to anyone else with dementia because it is THEIR dementia!
What will happen next?
Generally, the first thing anyone notices is memory loss. Forgetting people’s names maybe. Then, over time, forgetting where they live…right up to forgetting how to talk, walk, use everyday objects. This can take years though and some people never get that bad. Children asking this question about dementia are asking for reassurance for the future. Be honest.
Will they get better?
It is unusual for a dementia to go away. Sometimes there are other problems alongside the dementia which make it worse. Maybe the person is not drinking enough, maybe they are not taking their medicines properly. Once those issues are sorted out, sometimes there is an improvement. But usually, people with dementia do not get better.
Why do they shout?
The person with dementia might have forgotten that shouting is frightening for other people. Perhaps they have gone deaf and cannot hear how loud they are talking. A child may need reassuring that the person is not cross, just loud.
Why can’t they talk? Why don’t they talk to me?
Children are used to receiving verbal responses from adults – it tells them where their boundaries lie. It is disconcerting to be ignored. Advanced dementia can mean that a person has not only lost the ability to speak, they cannot interact at all. There are many potential reasons for this – brain damage or the inability to process communication are two, They may still be able to hear so encourage children to be remain respectful.
There are methods which can be useful to aid communication with someone with dementia which children can understand and use. That’s for another page!
Why do they just sit there?
Of course, there may be many reasons why a person loses the ability to walk, but dementia may mean that they have literally forgotten. Talk the child through all the little moves which go into standing up from a chair and walking. We take it for granted but try it whilst not moving any part of you without thinking about it first! “Sit forwards – move left arm – hold arm of chair- move right arm….” If the person has tried and fallen, then their confidence will have gone or they hurt,
Why do they argue with everyone?
People with dementia often struggle to make sense of what we regard as normality. And, as an adult, they resent being told they are wrong. If the person with dementia wants to eat with their fingers, they will argue with anyone who tries to tell them differently. Bear in mind, they have possibly forgotten what knives and forks are for. It is not always a case of being cantankerous. Sometimes allowing them to carry on is the best solution. This question may come from a child worried about the increase of tension and volume in the home. The person with dementia cannot step back from the argument, so you may need to. An explanation to the child about brain damage and how the person may put themselves in danger should be enough to stop any copycat behaviour! Kids soon learn!!
Why do they keep asking the same question?
The same question repeated over and over is highly irritating. But for the person with dementia, each time is the first time. The memory has not retained the answer from last time. Resist the temptation to give silly or different answers however, there will be a part of the answer which is remembered; you’ll confuse them even more. Saying “try to remember what I said last time” does not work – they can’t! A child will learn compassion and patience if they see it in action. Repetition of a song is common too. The song could remind them of a time when they felt safe, loved or happy.
Why don’t they live at home any more?
The answer to this will depend on circumstances. If the person has moved into care, you can explain that they will have someone there all the time now. People who are trained to help with everything that needs doing. Maybe the child misses the old house. If the person with dementia has moved in with you, the question may have a deeper, more serious root. Life may have changed dramatically for the child. Read some of the questions below that the child may not feel able to ask and pre-empt worries. This is the time for an open and frank discussion.
Why do they like the same things that me and my friends like?
Some types of dementia lead to a child suddenly having a new best buddy! Often this is wernicke-korsakoff’s syndrome. All adult cares and responsibilities are cast aside and the person becomes great fun…for the child certainly. Things may be more of a challenge for the parent however. Children are used to doing as they are asked by an adult – if that adult has blurred boundaries, the child will have to use their own sense of what is safe for them both. Usually the fun is confabulated memories – the person will say that they have been to Scotland for the morning for example. Let that go…ask them how it was. No need for an argument. The child may wonder why an adult is not telling the truth. Speak to them about memory loss and how the person has forgotten what they did this morning, so their brain is filling in the gaps.
Why don’t they use a knife and fork?
There are different types of memory. Sequential memory is how we tie shoelaces or ride a bike without having to think through each step every time. It is brain and muscles working together in synchronicity. However, brain damage breaks the link and, for instance, a knife or fork make no sense. Seeing others using the items can jog the memory, but not always. Talk the child through something they can do without thinking – get a glass of water maybe. Now…supposing they forget what a glass is, or where to find it. (I really want to bang on about how this can lead to dehydration – a major cause of confusion. Or to drinking dangerous liquids. Or feeling like a fool and not wanting to ask anyone. There’ll be a dementia poem on it soon!)
Why do they hit and kick and throw things?
Imagine the frustration of having dementia! Not being able to remember simple things, not understanding the world around you. Perhaps knowing that you should remember, but cannot. Being told you are wrong. Over and over again. Who wouldn’t be angry? And scared? Talk to the child about what they would do if they felt scared. If they thought that people were going to hurt them. If they didn’t understand what was happening around them. Very often, hitting, kicking and throwing things will come up! Many arguments can be avoided however. Allow the person to do things their way as much as possible. Back off when they are feeling threatened. And ask for professional help if you are getting hurt.
If you are finding it hard to answer children’s questions about dementia, Dementia poems can help to get things straight in your head.
Why do they keep ringing?
If the person with dementia gets frightened or worried, the natural thing is to pick up the phone and call family. The issue is that they may not have any concept of time of day, or memory of having called only five minutes previously. Firstly explain to the child about memory loss and how the person is worried. Secondly, learn to hear the ring tone as an invitation to breathe in deeply and relax before choosing whether to answer it. Talk the child through this too – it’s a great way to cope with office life!
Why have they changed?
Change is inevitable in life. Talk to the child about how they have changed. Grown up maybe. People with dementia can change quickly, particularly with vascular dementia as another bleed or clot affects the brain. The child may need reassurance about life changes – they may be worrying that change is going to affect everyone faster than they would want.
Why do they do strange things?
To someone with dementia, normality may be something they have forgotten. They are trying to make sense of a strange world. So, maybe they see a hairbrush and wonder what it is for. It could be mistaken for a cooking utensil which then gets put in a kitchen drawer. A vase looks like something you can drink out of. A dressing gown is a lovely warm coat..wearing it outside makes more sense than we realise! What is strange to us may make sense to the person with dementia. The person may know that something is wrong – they could try to cover up their confusion by hiding anything they do not understand.
Why do they see things that are not there?
Hallucinations are common for several reasons. The dementia may be literally showing the person dreamlike images – they may see other people or animals in the room. Another reason for seeing things is that the brain can no longer correctly interpret what the eyes are showing it. Also poor eyesight can lead to misinterpretation. A confused brain sees a shape and tries to make sense of it. Some people can understand that they are having a hallucination. Others are calmed down when someone takes them seriously and shows them that what they are seeing is not a dog, its a pile of clothing for instance. Be careful not to make things worse by pretending you can see it too – that just cements the illusion. Don’t argue – just say you cannot see it but you understand that they can. Reassure the child that hallucinations are common and there is nothing there to fear.
Why do they keep going out at night?
People with dementia often lose concept of day and night. If they fancy a walk, want to go to the shops, or cannot remember where they are and need to escape, they may go out during the night. They will not realise that they cannot see as well, or that no-one else is out.
13 questions your child may not like to ask –
Children’s questions about dementia often hide a question they would ask but do not like to. If you feel that the child is holding anything back, let them know that all topics are open for discussion and sit with a drink and a biscuit. Below are some that may emerge from behind the curtain.
Will I catch it?
Short answer: NO! Kinder answer is that dementia is not contagious. It is not proven to run in families although certain lifestyles may lead to some types of dementia.
Will you catch it?
Again, reassure the child that dementia is not contagious. However, their question may be based on the fear of losing you as well as the person with dementia. They need to know that you are not going to be unwell. They have just realised that people are not around forever maybe.
Will I have to look after them when I grow up?
A gentle explanation that the person with dementia will not live forever seems unkind, but the child is worrying about their future. Offering frank facts will reassure them.
Will my friends laugh at them? Or me?
Children are often the most accepting of humans, however they can also be unkind. If the child is being teased about the person with dementia, it is worth inviting discussion with those kids’ parents to promote understanding, maybe with the kids themselves. Usually however, if given an explanation they can understand, children will amaze you with their ability to empathise. It may also be a great idea to ask the school if they can have a dementia awareness week. Educate the entire neighbourhood! Perhaps the child does not invite friends indoors any more, maybe they are embarrassed. Suggest a get-together in the garden if you can. Or explain to another parent and arrange a play-date at their house.
Why do they smell?
Be honest! Explain if washing is difficult, and about how the person cannot walk to the loo any more. If there is a constant offensive odour, consider constipation or an infection. Consult a doctor.
Why do you keep crying?
Again, be honest. The child is seeking reassurance that you are alright, and that it is not their fault. But be open with them about your feelings. Feeling tired and frustrated is nothing to be ashamed of. If things are that bad, try to find support. But if you engage the child, you have one extra supporter already.
Why can’t we go out any more?
Life has obviously changed for the family and the child may be feeling bored, resentful or fed up. That is understandable. Kids need time out – as do adults. A chat about it, asking what the child would like, may help. It could be as simple as a couple of hours playing football. Maybe the person with dementia could come along.
Why am I not allowed to visit?
Have you decided that the child would be traumatised by seeing the person with dementia? You will have to be more honest with them if this question has come up. They may be feeling left out, or frightened by what they are not being told. Children have powerful imaginations which can conjure up all sorts of gruesome pictures. You may find that given an explanation, they still want to visit. Be prepared for more questions if they do – and answer them as honestly as you can. If the person is in a care home, enlist the help of a staff member. Care staff are usually angels who hide their wings.
Why am I not important any more?
With all the work and worry in caring for someone with dementia, this child is feeling left out. Maybe they have had to grow up quickly. Enlisting their help in the care can ease their pique, and quality time together is important, no matter how short. Devise some sort of timetable which shows the child that they are going to get attention regularly, not just when they ask this question. As always, talk openly and honestly with them.
Am I horrible because I don’t like them?
Short answer: NO! The child does not see the person with dementia as they used to be. All they see is a disruptive adult who has taken over the lives of the family. It is understandable that there is resentment there. Tell the child that you understand, then try to talk things through. Agreeing with them is not going to help!
Why does a grown-up wear nappies?
Be open about how the person with dementia can no longer get to the toilet. And that although it would be better to take them to the toilet every hour, you cannot do it. Sometimes there will be an “accident”. The person with dementia has probably forgotten what the urge to urinate or open their bowels means – they just know they feel uncomfortable.
Why do we have to go round every day?
It’s easy to get annoyed with such a question as you’re possibly wondering the same yourself. Could you visit a park en route? Make the daily welfare visit a treat? Could a couple of visits be replaced by a phone call? Is there a friend nearby who could look after the child for an hour if you have to go every day? Failing that, an explanation will ease the concern.
Why do I get told off for saying that word?
Sometimes, people with dementia can come out with words or phrases that shock. What has been buried is now released from the cage of social niceties. Usually right in front of the person it will offend the most! You can explain about brain damage and remind the child that even though people know those words, they are not nice to say in company.
I hope that you have gained some insight from my Children’s Questions About Dementia page. If so, please consider leaving me a small tip – the price of a tea or coffee and cake maybe. Thank you. The Ebook with the Children’s poems in will be on sale on this site.