Being with people who have dementia is confusing for most adults but for children it can also be alarming. Alzheimer’s Research UK has developed a new website (www.dementiaexplained.org) with input from children and families who have experience of the condition, which now affects 850,000 people in the UK. As well as videos, games and a memory board where children can share experiences, the website features stories narrated by radio and TV presenter Edith Bowman (above). Grandad’s Hat – which he has put down somewhere and eventually turns up in the fridge – is for young children and When Grandma Came To Stay for older ones. This explains that dementia is affecting Grandma Mary’s brain so messages get muddled and she forgets important things, which is why she has come to live with the family. But, and this responds to a common fear for children, the story emphasises that you cannot catch dementia.
Edith Bowman became a supporter of Alzheimer’s Research UK after visiting researcher Dr. Selina Wray at her laboratory at University College London and discovering that the brain of her much loved uncle Ian, who died in October 2014, was in a brain bank a few floors below. Ian had progressive supranuclear palsy, a rare brain disease that can lead to dementia. Earlier in Edith’s life her grandfather Alexander, who she was very close to, had a stroke in his 60s: ‘I was eight and it was very hard. My mum and dad were really honest and that comforted me.’
Her grandfather later developed dementia. ‘He had no problem with remembering facts from many years ago, but more recent things troubled him,’ explains Edith. ‘One time he mistook me for his beloved wife Edith, who died when my dad was three.’
Edith’s two-year-old son Spike is too little to notice what is happening but Rudy, six, is ‘a very inquisitive child’ and asks lots of questions about Edith’s grandfather and how he died, and about uncle Ian, who he knew. ‘Rudy asks things like “how did his brain get poorly?” I try to be as honest as my parents were with me,’ says Edith.
During research for the website, the charity found that children who had a relative with dementia wanted answers to questions including ‘what is happening to them’, ‘will they get better’, ‘does it hurt’ and ‘will I get it too’. The Dementia Explained website provides simple answers to these and other questions in a child-friendly way.
The two books Edith narrates are, she says, ‘a brilliant idea. They will help children understand things that can be upsetting and confusing. I can see this site being a real help for parents who want to talk through the condition and explain why a family member might be behaving in an unusual way.’
WHAT IS DEMENTIA?
■ Dementia is an umbrella term for symptoms caused by a number of diseases; Alzheimer’s disease is the most common.
■ Symptoms include memory loss, problems with swallowing, change in personality and behaviour and difficulty with language and communication.
■ Age is the biggest risk factor for dementia. There are very few treatments available and none that can slow or stop the progression of diseases such as Alzheimer’s.
More information at www.alzheimersresearchuk.org
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