Dementia isn’t a condition that just affects an individual, its impact is felt through whole families and across generations. Dementia is a difficult condition to understand even for adults. Changing personality, confusion, misrecognition, and behaviour changes in people that we care for the most is hard for anyone to adapt to. For a child, whose grandparent or parent has dementia, the impact of these symptoms can be acute.
‘Why does she not recognise me?’, ‘Why is she angry with me?’, ‘How can I help him?’ are just a few of the questions we heard when talking to parents and children whose lives have been impacted by dementia.
There are many households in the UK, and across the world, grappling with the answers to these questions. A new YouGov poll commissioned by Alzheimer’s Research UK has revealed that nearly three in ten parents in the UK (29%) say their children aged 18 and under have been impacted by dementia but just 27% would be very confident explaining the condition to their kids*. Parents have told us that they particularly struggled to explain aggression, as well as the later stages of the condition, when communication and recognition start to break down.
This isn’t just a problem in dementia. We know that discussing issues around chronic illness can be some of the most challenging conversations for a parent to have with their child. However, there is a glaring lack of engaging and informative resources for children and young people about dementia.
5 common questions children ask about a relative with dementia:
- What is happening to them?
- Will they get better?
- Is there a cure?
- Will I get it too?
- Does it hurt?
While the questions themselves sound simple, the answers most definitely are not. Many of the questions children ask don’t have clear right or wrong answers and every family’s experience of dementia is different. But what can help is an understanding and appreciation of what dementia is and how it affects someone.
Our work developing ‘Dementia Explained’ – a new online resource for children and teens – was eye-opening in many ways. The young people we spoke to were adamant they wanted to know the reality, and to be informed about dementia and why it affects someone in the way it does. They didn’t want to be wrapped in cotton wool or left out of conversations. With the internet at their fingertips, we can’t stop young people accessing a huge wealth of information about health online, some of which may be misinformed or poorly written. We wanted to make sure there was a dedicated and engaging resource for parents and young people to visit, with up-to-date information written with the help of health professionals.
For adults and children alike, if you can understand how the brain works and how it helps us to live our lives day-to-day, then you can start to appreciate what might happen when this goes wrong.
If the area of your brain controlling how you perceive your arms and legs has trouble working, then you might be more likely to stumble or knock things over. If we can picture and understand this process, then we can start to appreciate these problems aren’t anybody’s fault. This knowledge can help children start to put themselves into the shoes of their relative, as well as start to make sense of some of the emotions they are feeling.
We hope that Dementia Explained can act as a starting point for children and young people who are on a journey with dementia. We want to help them have a discussion with their parents or grandparents, to learn more and understand the condition, and to read about experiences from other people their age.
As Dan, 12, describes so eloquently, his family still talk about his Nan but not as if she isn’t there, because she is there – just in a different way.
Our ambition is for the site to grow and for those who have found it useful to share their tips to help other children who may one day find themselves in the same situation. We’ve already been contacted by schools in the UK who are doing dementia projects to raise awareness and understanding of the condition, which is fantastic.
A powerful way to change the stigma that still surrounds dementia is to engage, educate and support the next generation. We’re incredibly grateful for all of the families and organisations who have recognised the importance of this conversation and are helping to move us all forward.
Visit www.dementiaexplained.org to find out more.
Is your story missing from Dementia Explained? Tell us and help us share it with other families.
* New poll figures quoted are from YouGov Plc. Total sample size was 4,479 adults, of which 1,059 were parents of children aged 18 and under. Fieldwork was undertaken between 12th – 16th November 2015. The survey was carried out online. The figures have been weighted and are representative of all UK adults (aged 18+). The survey was commissioned by Alzheimer’s Research UK.