Expert / 5 September, 2022 / My Baba
Talking to your child amount dementia can be tricky, especially if your children are still young. Fran Vandelli, Dementia Lead for Bupa Care Services shares how best to explain a dementia diagnosis to our children and the importance of being transparent. Fran shares a toolkit of tips to help guide you and your child through this worrying time.
Dementia impacts not only the person diagnosed but also their family, friends and carers. It’s important to give everyone time to adjust to the impact it has on the family dynamic – including children.
Physical, emotional and financial pressures are just some of the effects of dementia, so trying to explain what your loved one is going through to your children can be difficult, especially when you’re coming to terms with the diagnosis yourself.
Here, Fran Vandelli, Dementia Lead for Bupa care services shares her advice on talking to a young child about a dementia diagnosis, and how to start the conversation.
It’s important that you do tell young children about dementia and any diagnosis within the family, although it’s likely they won’t understand fully what is happening. Speaking about it allows them to open up and ask you if they have any questions or worries. If your children are young, they will be satisfied with a simple explanation such as, ‘Grandma has a brain illness called dementia which is making it harder for her to remember or do all the things she used to’. If they want to know more, you could give more detail, such as, ‘The illness may make her act in a way that’s a bit odd, or you might find upsetting, but try to remember she’d still the same person she always was, and still loves you just as much as she always has.’
Whilst you might be trying to be protective of your child, they will pick up on secrets and hushed words, which could worry them even more. The most important thing when your explaining dementia to your child is to be honest in an age-appropriate way. Children love to feel helpful so tell them as soon as you’re ready and encourage them to think how they could help such as spending time with their loved one, creating a memory box or simply drawing and colouring pictures.
It’s beneficial for both your child and the loved one that has been diagnosed with dementia. As adults we tend to find dementia harder to deal with than children, who tend to take it in their stride. Don’t be afraid to let your child spend time with their loved one, the more we encourage their curiosity and engagement, the more accepting they are. Furthermore, talking to your child about the diagnosis will help you all to focus on the fact that your loved one is still a person, with the same feelings, hopes and fears they had pre-diagnosis.
Talking to your child about dementia is as much about listening as it is about informing them. Chances are that a grandparent’s diagnosis will be the first time your child has had any form of exposure to dementia, so it’s important to use this conversation as a platform to encourage them to express any feelings about their loved one’s diagnosis, going forward.
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Using terms that your child will understand, explain what dementia is clearly and calmly. By keeping the explanation simple, it will help you to ascertain how much information your child’s able to cope with at this time.
Use your conversation to reinforce that whatever your child is feeling is normal, and that they’re always welcome to share what they’re feeling with you or ask any questions.
You could strengthen this offer by setting aside a regular time – for example, once a week – to spend some quality time together, giving your child the opportunity to share what they’re feeling.
Coming to terms with a loved one’s dementia diagnosis can be difficult from an adult’s perspective. Though you may be going through a range of grief-like emotions, like panic and a low mood, it’s important to try and put yourself in your child’s shoes, too.
Try not to assume how your child will react to the news of your loved one’s diagnosis, and instead let them explain, in their own words, what the diagnosis means to them. Listen carefully to what they have to say to see if there’s anything specific about the diagnosis that’s worrying them, so you can think of ways to support them.
Again, it may feel tempting to protect your child from the full extent of what’s happening, but it’s important to be realistic about any changes to your loved one’s behaviour. Identifying any behavioural changes – and informing your child that they’re down to their loved one’s dementia – can help to better develop their understanding of the disease.
Don’t forget that it’s fine to openly share with your child that some of the behaviours that they may witness may seem strange – for example, your loved one struggling to recognise family members, or them having difficulty remembering where they are.
Whilst it’s important to be realistic about the things that their grandparent may not be able to do as well anymore, remember to consider the ways in which you speak about your loved one’s diagnosis in front of your child. Don’t forget to remind them – and yourself – that there are still things that their grandparent can do, and still things that you can do together as a family.
Often, living with dementia means that the creative aspects of a person’s character become more prominent. With this in mind, plan days where your loved one and your children can enjoy music together. Whether singing or dancing, music can be a great vehicle for communication; providing mental stimulation, along with opportunities for talking together about times gone by.
Though your emotions may feel fraught, try to practice patience with your child. They may not have fully understood the way you explained dementia the first-time round. If this happens, take a deep breath, put yourself in their shoes and calmly try and reframe your explanation in a way that accounts for their age and level of understanding.
This also applies if your child is still expecting their grandparent to get involved with activities, they were previously able to, but no longer can because of their diagnosis. A gentle reminder can help to reinforce reality and keep you all on the same page.
At this uncertain time, reassurance and hugs are a great way to connect with and calm your child. Plus, this reassurance and comfort will help to remind yourself that you’re all there for one another.
Don’t forget that there are lots of resources to help support your child’s understanding of dementia, and to help you communicate more effectively together about the condition.
If you’re struggling to encourage your child to open up to you but they seem distressed about their grandparent’s diagnosis, why not try making a comfort kit for them?
Additionally, Dementia UK has a range of resources specifically designed for children to help develop their understanding of the condition and how it may affect their grandparent.
Article by Fran Vandelli, Dementia Lead for Bupa Care Services
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