How DO you tell a child that granny’s got dementia?
Great-auntie isobel greets Oliver with a hug and the ten-yearold responds with an affectionate grin. the pair have an easy rapport as they spend a relaxed afternoon together at her care home, and Oliver knows without doubt that she is pleased to see him. But then she asks him his name — again, and again, and again.
it can be quite annoying, the tenyear-old admits, but he knows auntie isobel has dementia, so he’s patient.
‘if she keeps asking me the same question, i just keep saying the answer. it’s not her fault she can’t remember.’
they do jigsaws — special, simple patterns designed for adults with dementia — and talk about their lives. it’s a relationship that enriches both octogenarian and little boy.
Oliver, in turn, is learning how to listen, that life isn’t always perfect and that you have to look after those you love when they need you most.
‘Kids get it,’ says tV broadcaster angela rippon, who leads the alzheimer’s Society’s rapidly expanding youth programme. ‘they don’t have the fear, and the word stigma is not in their vocabulary.’
Deciding how much to tell children about a relative’s dementia — or whether to tell them at all — is a dilemma faced by increasing numbers of parents, as i discovered when i was researching the condition for a radio programme.
Oliver is among many thousands of children dealing with dementia in the family. Once comparatively unusual, as Britain’s population ages, the condition is rapidly becoming an unavoidable part of day-to-day life.
even those who don’t have a close relative with dementia are more and more likely to encounter it in elderly neighbours, or on a trip to the shops.
Some 850,000 people are living with dementia in the uK, and this figure will top a million in the next eight years, reaching two million by 2051 — when Oliver will be in his early 40s.
‘every child growing up now is going to know an adult with dementia,’ says Professor Clive Ballard, leading expert on the condition and head of exeter university Medical School. ‘and if they live past 80, they have a one-in-four chance of developing it themselves. So it’s a really important thing for children to know about.
‘i believe it should be on the national curriculum. a lot of our attitudes are set in childhood. it is absolutely pivotal that they learn about dementia.’
He
SeeS this as one of the key ways to reduce the lingering stigma that surrounds the illness. People are often pushed out of society, isolated from friends and family, because we don’t know how to cope with them.
the world we live in — including shops, banks, cafes, certainly websites and even most medical centres and hospitals — is not dementia-friendly. When someone starts behaving strangely, we tend to shy away, afraid of what we don’t understand.
experts believe we can change this for the better by educating people — especially children, whose minds are open and receptive — about the illness.
‘We’re beginning to destigmatise it, but there’s a long way to go,’ says Professor Ballard.
in Oliver’s case, his mother, Kathryn Smith, was already knowledgeable about dementia through her work, and she read bedtime stories about dementia to her children — Oliver, Jacob, 14, and Kian, 18. it meant it was relatively easy to explain to them what was happening to their great-aunt.
But she admits many parents feel reluctant to raise such a sensitive issue with their children, fearing upsetting them.
‘ideally, it’s best to talk to them about it before it’s in the family,’ she says. ‘that way, awareness grows with the child.’
isobel was diagnosed when Oliver was five, so he’s grown up accepting her for who she is, rather than being afraid.
‘People with dementia are still individuals — the same person underneath,’ says Kathryn, who points out that if you are not honest with children, they will conjure up something in their imagination that is often far worse than the reality.
they may even believe it is their fault when a relative becomes unsettled, or they are no longer taken to visit.
Most importantly, though, their presence does the person with dementia so much good, Kathryn stresses. ‘ even if they don’t remember who you are, a visit can still make them happier. they may forget the facts — but not the feeling of being loved.
‘i tell the children never to lie. if you are asked a straight question, answer it. But if auntie says something wrong, don’t correct her. and that includes when she’s complaining, “i’ve been stuck in here for months and nobody’s visited”, even though you know you have!’
each time they visit, Kathryn takes a photo of the group, which she prints out and brings along on their next trip. Pictures, she says, are great conversation-starters.
While it’s natural to want to correct a person with dementia when they get things muddled, many experts now say it’s better not to contradict them, as this can cause greater distress. april Dobson, head of dementia care for Hallmark Care Homes, explains: ‘Go where they are; don’t try to drag them into our reality.’ Young children are often better at this than adults, she adds, as they can feel less upset or embarrassed by awkward comments. Still, dementia is not easy to understand — even for an adult. So what does a child think about it? Oliver tells me confidently that the condition is ‘a brain disease that is slowly getting rid of their memories’. ‘You should keep reminding them that you love them,’ he says seriously.
He adds that, while his auntie isobel’s repeated questions can be frustrating, that doesn’t mean it’s not worth speaking to her.
‘take a stress ball to squeeze if you get annoyed!’ he advises other youngsters.
While children can be ideal visitors, you do have to take into account the character of both the child and the older relative.
Kathryn’s grandfather was diagnosed with dementia in the same year as her great-aunt. But while isobel had always adored children and still derives great pleasure from seeing them, for her grandfather it was different.
‘He wasn’t a child person before he had dementia,’ says Kathryn. ‘and as the illness progressed, he showed his irritation more openly.
‘the children’s visits weren’t beneficial for them or him, so i stopped taking the boys to see him some time before he died.’
emma Crozier worked hard to make sure her seven-year-old son Matty maintained a loving and meaningful connection with his grandfather, alan.
emma’s father, who died last year, developed dementia in his mid-50s. this is not as unusual as you might think: more than 40,000 people under 65 have a diagnosis of dementia, and many more go undiagnosed.
‘My dad had always been fit and good-looking, a sportsman, a geologist who travelled the
world,’ says emma. ‘ Then he started losing parts of himself and his behaviour could be quite challenging. he sometimes got angry with himself when he was unable do simple things — like make a cup of coffee — and could seem impatient with those around him.’
To help matty understand his grandfather’s behaviour, emma told stories about Alan’s past life and explained why he got frustrated when he couldn’t do something. she chose activities her son and father could do together. They read books, coloured in, played with toy cars and kicked a ball between them.
‘my father could kick a ball almost until he died,’ she says. ‘it was instinctive for him. You need to find things to help the person interact in familiar ways.’
Leah hearnshaw, aged eight, has found her own ways to connect with her grandfather. he can no longer see or talk much, but he’s always loved nature, so she made him a basket of crunchy leaves and shiny conkers so he could hear and feel the autumn. ‘he liked it,’ she says. ‘he was smiling quite a lot.’ Leah also feeds her grandfather little chocolates and takes his arm as he walks around.
When intellectual ability is gone, the sense of touch remains. it is a way to interact with someone even in the advanced stages of dementia, and can be reassuring at any time.
some children, like Leah and matty, will offer a hug instinctively. Others are more wary and a shared toy or game may provide a good way to make contact.
Leah’s mum, Cate, explains that her little girl’s involvement isn’t just good for Grandpa, it helps Leah deal with his illness, too. Finding ways for children to join in makes them feel less helpless.
Leah and her mother recently gave a presentation at Leah’s school. ‘i told them dementia is a disease,’ says Leah, ‘but you don’t catch it like a cold. i said you can die from it, but you can live a very long time — and there are lots of things we can do to help.’
Professor Ballard stresses that although some children may find unpredictable behaviour frightening, these worries may be overcome with reassurance and by finding a way to play together. Of course, there is no one-size-fits-all solution, but educating children and teenagers so that they better understand what is happening to elderly relatives will help.
After five years, the Alzheimer’s society education programme is in some 600 schools and has reached a quarter of a million children.
if we can help them to understand dementia at an early age, Angela rippon says, ‘ they will take the knowledge forward into maturity.
‘They will recognise dementia in their families or people they meet in the street. They won’t be impatient or unkind. They will know how to deal with it, and they will pass that understanding on.’
The goal is nothing short of societal change, and the creation of a ‘dementia-friendly generation’.
John ramsay also believes this is of paramount importance. he grew up in a family affected by dementia and is evangelical about helping children stay close to relatives who have the condition.
his grandmother was diagnosed when he was very young and died when he was ten. his father then developed early- onset dementia, and died when John was 22.
‘When i think of Grandma Clare, i remember a lady who knew nothing, remembered nothing and behaved bizarrely. We were told to be kind to her, and we were, and she’d laugh and laugh at anything we said.
‘i remember sitting on my father’s knee when i was very small and saying: “Promise you won’t turn into Grandma Clare.” it’s harrowing to remember that.’
he now travels around care homes selling Tovertafel (Dutch for ‘magic table’), a colourful game with projected lights designed for people with dementia — and children can play, too.
my research on the condition for articles and a radio programme led me to write a children’s picture book that gives parents a simple way to explain to the very young why someone with dementia is behaving oddly.
Travels With my Granny follows an older woman who voyages in her mind — revisiting her exciting past in rome, Jerusalem, London and New York — and the grandchild who, through Granny’s reminiscences, travels with her.
‘The grown-ups think Granny is confused and doesn’t know where she is,’ the grandchild says. ‘i think she knows exactly where she is; it just isn’t where the grown-ups are.’
it’s this simple acceptance of different ways of seeing the world that could make children the key to changing society’s approach to people with dementia.