THERE can be a big fallout when dementia isn’t explained properly to children whose grandparents have the condition, says Professor Suzanne Cahill, director of the Dementia Services Information and Development Centre.
She has worked for 30 years with families affected by dementia.
In Ireland, 55,000 people are living with dementia, a condition that affects more than 500,000 families.
“For children, there can be issues like embarrassment, a reluctance to bring friends home because Granny might behave irregularly or come out with a strange statement.
"If children don’t know about dementia, they can make a joke of it, distance themselves or be frightened of their relative,” says Cahill.
Parents’ first natural inclination is to protect their child — no matter his/her age — around what’s essentially an incurable condition, says Samantha Taylor, national information and advice services manager with the Alzheimer Society of Ireland.
“Children naturally jump to ‘oh, Granny will go to the doctor and get better’. It’s difficult for parents to broach the news that Granny can’t get better.”
While the news may be gradually revealed if Granny lives further away or isn’t part of the child’s daily life, it’s still challenging to know how much to tell, when to tell and how to tell it.
“But it’s not an option to say nothing,” says Taylor, explaining that children — even teens — can sometimes believe Granddad’s erratic behaviour is down to them: they’ve been naughty or they haven’t been chatting to him.
“Or perhaps Granny brought the child to ballet every week and now she can’t, there’s been no explanation — the child’s confused, thinking Granny doesn’t want to spend time with her anymore.”
Children may also think their grandparent’s condition is contagious, says Taylor. So while it’s heartbreaking to hear about dementia, it can be a relief.
“The child realises ‘so that’s why he isn’t remembering my name’.”
It’s important, says Taylor, to give children plenty opportunities to talk about the dementia.
“They may feel a sense of uselessness — there’s nothing they can do to make the situation better.”
However, she points out that through the early and moderate stages, children and individuals with dementia can interact really well.
“Children are very good at being in the moment — and people with dementia often live in a moment.
"Together, they can do simple tasks — folding socks, potting plants, going for a walk. The child and the person with dementia can be completely in the moment together.”
With a view to awareness-raising among younger generations, the Dementia Services Information and Development Centre has developed a new tool to educate young people about the brain and dementia.
The resource — ‘The Brain, from the Fantastic to the Forgetful’ — is for secondary school students and follows a previous dementia programme (‘Will Granddad Remember Me?’), which Dearbhla O’Caheny, education officer with the Dementia Services Information/Development Centre, delivered in two Dublin schools in 2014/2015.
“Some students had personal experience of living with relatives with dementia. They all spoke about the confused talk of their relatives. They didn’t know why this was happening, why they couldn’t remember things that happened last week.
"They were curious about why memories of things that happened long ago were more readily available than stuff that happened a week or an hour ago,” says O’Caheny, adding that children’s unconditional love for their grandparents came across strongly, as did their eagerness to learn how they could communicate and connect with them.
“We explained they should focus on the grandparent’s long-term memory. Children said they loved having conversations with grandparents and learning about things that happened a long time ago when they were children.”
Such reminiscence-themed chats can be very bonding for grandparent and child, agrees Taylor.
“They can each find wonderful linkages — Granddad talking about the days when he played football with the local club and the child plays football too.”
The new educational tool educates children about the brain and the interaction between brain and lifestyle.
It explains that, while young people are legally adults at 18, their brain isn’t fully developed until their mid-20s so it’s vital they engage in healthy brain behaviours — new learning, exercise, a healthy diet, keeping a check on weight and avoiding risky behaviours detrimental to the brain, such as alcohol, binge-drinking and smoking.
“The students we met knew, for example, about the effect of obesity on cardiovascular health — they didn’t know about its impact on brain health,” says O’Caheny.
For dementia awareness, the resource teaches what’s happening in the brain of the person with dementia and encourages the student to see the condition more as a disability, where the person still has ‘retained abilities’ —activities they can still do.
Info: email firstname.lastname@example.org or phone 01-4162105.
Ethan Cunningham, 18, works in Tallaght Leisure Centre. Grandfather Seamus was diagnosed with Alzheimer’s disease when Ethan was in third year.
“My granddad and I always got on well. We could talk about anything. I don’t remember it being a big deal, his being diagnosed with Alzheimer’s. He didn’t treat me differently, I didn’t treat him differently.
"I can’t remember a conversation about it — certainly not more than a few sentences. I didn’t know the stages or that he’d get worse. It felt like I’d known already he had it.
“He used to have breakfast with me but when he got the Alzheimer’s he didn’t get up early. I missed that, but it would only have been ‘good morning Pop’ – I wasn’t much of a morning person!
“There was one time he thought my mate, Aaron, was me. Aaron said ‘you know it’s me, Aaron?’ We just laughed. It’s more of a laugh when he does forget something.
"There are moments when he gets lost in a strand of conversation. Sometimes you need to keep an eye on him, and just be patient – what would have taken him five minutes now takes 10.
“It’s like a light switch. You could be going along fine and it just takes one little moment. Say you’re having an argument — sometimes he’s able to say ‘oh, yes, I’m wrong’, other times he’s persistent even when he is wrong. But he’s still my granddad.”
Ethan’s father Stephen, (Seamus’s son) says: “The first sign was the constant forgetfulness. He seemed agitated at times, which wasn’t my dad — he’d always been calm. Now he’d get fixated on stuff.’
“Before the diagnosis, we didn’t know what to say to Ethan. When we found out, we said ‘just give your Pop a little extra leeway’. Ethan was very good at sitting down and talking to him, asking how his day went and telling him about his own.
“I could get frustrated quickly. Ethan wouldn’t. It could be an argument over what Seamus did that day. He’d say ‘I was out doing the garden’ and I’d say ‘but I saw you doing the car’. Even at 15, Ethan would nudge me and say ‘let it go’.
“Seamus has a close relationship with all his grandchildren. They bring out his bubbly side. He gets down on the floor to play with his great-grandchild, Morgan.”