As Community Care’s dementia campaign reachesits climax, Julie Griffiths looks at the often hidden impact of dementia on children in a family
Mike (not his real name) was 17 when he became a full-time carer for his father, who began suffering from early onset dementia at the age of 47.
Now an adult, Mike describes how tough the experience was. “The first time he soiled himself was the worst because I wasn’t used to doing it. I kept retching and it took me a couple of hours. But I became quite good at it and I’d have him washed and dressed in 15 minutes,” he says.
Mike also struggled to come to terms with other new facets of his father’s behaviour, such as trying to get out the house in the middle of the night.
Mike’s job in a bakery meant his working day finished at lunchtime, which fitted in well in terms of his caring responsibilities. His bosses allowed him to cycle home every few hours to check on his dad. But most people were unaware of the situation and Mike felt isolated.
“It was a lonely time. A couple of friends knew and would come round to watch telly with me at night, but I didn’t tell a lot of people. I didn’t really talk to friends about it,” he says.
Jakey Weech, four, has also been affected by a family member’s dementia. His grandmother, Pauline, has Alzheimer’s. Jakey and his mother Karen moved into Pauline’s home in Scarborough two years ago to look after her. On occasions, Jakey has helped his mum look for Pauline when she has wandered off.
“The key is explaining the condition,” says Karen. “We have a pull-out book on the human body and we go through the pages on the brain and I say, ‘Grandma’s brain doesn’t work like other people’s. Her memory doesn’t work as well’.”
Negative effects on Jakey have included seeing his grandmother angry and having to fight for his mother’s attention at times.
He would also use his grandmother’s dementia to his advantage. “He knows there is no discipline so he’d say, ‘Grandma, can you pass me the biscuit tin?’,” says Karen.
After a holiday last June, when the three of them had to return early because Pauline’s behaviour was so disruptive, Karen found a care home for her mum and she and Jakey visit frequently.
Read more about our dementia campaign at www.communitycare.co.uk/demcampaign
Clive Evers, head of professional liaison at the Alzheimer’s Society, says that young people can often hold misconceptions about dementia.
“Sometimes young children might think they’ve caused the dementia by being naughty. Another fear is that they might catch it,” he says.
Young people are not always able to explain their fears. Or, if they see adults are stressed, they may avoid talking about their feelings.
“Symptoms of distress include difficulties with sleep or attention-seeking behaviour. Sometimes school work takes a dip,” says Evers.
Children can be affected by a parent’s absence – emotionally as well as physically – when dementia is in the family. Reassuring young people that they remain important and loved will help.
What do I tell the kids?
Alzheimer’s Society tips on how to discuss dementia with children:
● Talk openly about dementia.
● Don’t be afraid to use humour. It helps if you can laugh about the situation together.
● Focus on things that the person can still do.
● Try to make sure the time they spend with the person is pleasurable − sorting objects or making a scrapbook.
● Remind the child that there can be good times, even during the illness.
● Do not leave a young person alone in charge, even briefly, unless you are sure they can cope.