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Towards a better understanding

A new website from Alzheimer’s Research UK aims to help young children, juniors and teenagers to understand dementia and the changes it can cause to a loved one’s behaviour. The site also assists nurses to answer children’s questions about the condition.

Nurses are pivotal to helping relatives understand more about dementia and its effects on their loved one. But while adults can be directed to various resources, until now there has been scant information for younger family members.

‘That’s why we’ve worked with health professionals and families to develop a website with information, activities and other resources for children of all ages,’ explains Alzheimer’s Research UK science communications manager Laura Phipps.

Picture credit: Corbis

In a YouGov poll commissioned by the charity and carried out in November, almost three in ten parents said their children had been affected by someone with dementia, with 11% reporting that their children had a family member living with the condition.

Divided into three sections for young children, juniors and teenagers, the website Dementia Explained includes games, stories and the experiences of children who have a family member with dementia. There is also an interactive virtual tour of the brain for each age group, information on research into the condition, and a section where people can share experiences.

‘As well as being a place to signpost children and families to, the information will be useful for nurses thinking about how best to answer some of the questions children might ask about dementia,’ says Dr Phipps. ‘They can struggle to understand why someone they know and love is changing in ways that can be upsetting.

‘We’ve tried to make sure the information on the site is clear, sensitive and as positive as it can be, without ignoring difficult realities.

‘By explaining that the brain – just like other parts of the body – sometimes becomes ill, we hope to help children make sense of the changes that might be happening to someone in their lives.’

Tackling stigma

Pauline Cameron, learning and development officer at the University of Stirling’s Dementia Services Development Centre, says improving young people’s awareness is vital to tackling the stigma and isolation associated with dementia.

‘It will be really helpful if young people grow up knowing that you can live well with dementia, and that there’s a lot we can do to improve people’s experiences.’

Children should be told about a diagnosis of dementia in the family as soon as possible and be given clear and accurate information, she says.

‘When we’re taking care of the person with dementia, we need to consider the family as a whole because everyone is part of their life,’ says Ms Cameron.

It is also important to recognise that everyone’s experience of dementia is individual. ‘There are so many variables,’ she says.

Ms Cameron adds that dementia, like cancer in the past, is a subject people tend to avoid.

‘Even if nurses just use the resource to stimulate a conversation, that’s a good thing,’ she says.

The new website can be found at www.dementiaexplained.org and you can email suggestions on how the site could be improved, or questions it should cover, to youngpeople@alzheimersresearchuk.org

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