How to talk to children about Alzheimer's: 'Don't hold everything back – they are resilient'

·8-min read
Telegraph christmas charity appeal - Andrew Fox
Telegraph christmas charity appeal - Andrew Fox

When Debbie Hopkins’ mother, Ann, then aged 70, was tested for Alzheimer’s in 2016, her first request was that her condition be kept private, even from her 12 grandchildren and four great-grandchildren. For the first six months, Debbie and her three siblings were sworn to secrecy, but when Ann’s condition began to deteriorate it became clear that they’d have to start breaking the news.

“In some ways, we dealt with it well, but I wish I'd told them a bit earlier,” says Hopkins, 41 from Warwickshire, who didn’t tell her two daughters, Lottie and Imogen, Ann’s two youngest grandchildren (then nine and six) until two years after their grandmother was first diagnosed. “As adults, we fear that children aren't going to accept it or deal with it, but they’re actually pretty strong.”

One of the things Hopkins thinks was important was breaking the news down into stages, first telling her daughters that their nannie was unwell, then introducing some simple information about the disease itself.

“I just said to them, ‘Nannie is not very well, her brain doesn't work the same as it used to and how ours works, so she might forget a few things but you have to be patient with her. If she asks you the same thing over, just tell her again, don't get frustrated or anything like that’,” she explains. From there, they read books and watched television programmes as a family to prompt conversations about the condition.

Perhaps surprisingly, it was Imogen, the younger child who seemed to cope with the news best. She was “never phased” by her beloved grandmother being bed-bound or struggling to breathe, Hopkins recalls how Imogen would leap into bed with Ann to cuddle her and talk about her day.

“She deals with things very matter-of-factly,” explains Hopkins. “She's so caring in her way, but I think she also sees that my mum couldn't have carried on because that wasn't her, and now she's free to be with her dad which is what she wanted. I think in some ways, when they're a bit younger they probably deal with it a bit more logically. They don't have all the buts and whys.”

Alzheimer’s Christmas charity appeal 2021
Alzheimer’s Christmas charity appeal 2021

For Lottie, however, the gradual loss of the grandmother she knew was trickier to manage. “The biggest thing for me was watching nannie lose her smile,” Lottie explained.

“Mum was very much a family person,” Hopkins explains. “Her grandkids were everything to her. She never forgot us and she didn't forget our names but I remember having conversations early on where she used to say ‘I struggle to find the right word of what I'm trying to think to say’. Then because she was fearful of getting it wrong, she became silenced. I think that was her fear of not being able to communicate properly, so she distanced herself a little bit. She wasn't the fun-loving mum or nan she'd always been.”

When Hopkins took her daughters to visit Ann, Lottie would say hello then go and busy herself elsewhere. She would later explain to her mum that she felt uncomfortable seeing how much her nan had changed, having lost weight, gone grey, and becoming bed-bound.

Even now, Lottie struggles with how her nan didn’t deserve the condition which took her life. “Once we'd spoken about it, and I'd explained the situation to her, she wanted to know more,” says Hopkins. “She kept asking what dementia was about, why it happens. To be honest, there were a lot of things that I couldn't answer: I don't know why it happens to some and not others. My mum's mum is 98 at the moment, and Lottie's response was 'how come my great-nan is 97 and she's okay, but nan's only 70, why?’ It was always ifs and whys.”

More broadly, Lottie was confused and angry at why Alzheimer’s was happening to her grandmother. “Lottie had a real connection with my mum,” says Hopkins. “My mum was the one who, when she was having tantrums with me, could turn it around and talk to her. She struggled with my mum not having that verbal side.”

Anne died in October 2020, and as she approached the end of her life, Lottie was inspired by her mother’s assertion that her nan was always listening, even if she couldn’t talk, to pick up a book. Hopkins describes Lottie sitting in bed with her nan and reading to her. It was a role-reversal of sorts: Ann had always read to Lottie when she was younger, and doing so while holding hands helped them get over the inability to have a two-way conversation.

Ultimately, Hopkins is proud of how her daughters coped with their nannie’s condition. “It's hard for us adults to deal with but for children it's even harder for them to get their little heads around,” she says. “You just have to give them the time, don't try to hold everything back from them because I think children are more resilient than we might think.”

How to talk to children and young people about Alzheimer’s

⇒According to Tim Beanland, head of knowledge at the Alzheimer’s Society

Don’t leave it too late. “If you leave it too late they can feel that they haven't been trusted, so it's best to tell them earlier rather than let them pick up on it themselves. Children are good at noticing subtle signs like parents looking stressed or tearful, or that grandma is behaving a bit differently.”

Let the person with dementia speak for themselves. “It can often help if the person with dementia is able to explain to their grandchild, if they're able to, because the child can see that they’re able to cope with it as well as they can and it’s not something for the child to be afraid of.”

Alzheimer's Telegraph Christmas Charity appeal - Andrew Fox
Alzheimer's Telegraph Christmas Charity appeal - Andrew Fox

Listen to them. “You could ask them 'have you noticed anything?' They might point out certain things they've picked up on, maybe grandma has started forgetting their name for instance. Listen as well as tell. Pick a quiet moment when they're not in the middle of something else, don't do it just before bedtime. If they have questions or concerns make sure they have the opportunity to talk those through.”

It doesn’t have to be doom and gloom. “Keep it clear, straightforward and calm. Be reassuring, while grandma or granddad might change a bit they'll still be able to give hugs, they can still see them and have fun. Dementia does change relationships and it gets harder, but if the child has been told when it's in its early stages then it's important to emphasise that the person isn't going to change that much that quickly.”

… But don’t be tempted to lie. “If a child says ‘is granddad going to get worse?’ I'd say "Yes, but it'll take several years" and try to help them not to worry about it. I would never tell them they're going to be fine or they're going to be cured because that's setting a false expectation which could be damaging in future.

Don’t overburden them. “I'm not sure it's helpful to tell them everything at once. Children are still developing themselves. You want to overburden a young child with information that they can't do anything about, so don't go into masses of detail about the progression.”

Try to find the positives. “While no one would ever wish it on the child for their grandparent to be diagnosed with dementia, it can be a learning experience and help them develop their listening, emotional resilience, and their empathy. It’s a terrible illness but families can get through it.”

Make a clear distinction between the illness and the person. “Sadly people with Alzheimer’s may get frustrated, agitated or angry. You'll need to explain clearly that it's the dementia which is causing them to behave oddly and taking away their memory. It's a hard distinction for an adult to make and even harder for a child so be gentle and keep reinforcing that point.”

Try to encourage empathy. “It might often be that the person with Alzheimer’s comes back to the same stories, and sadly the advice to the child will have to be not to get too frustrated if stuff comes around again and again. Teach them to ask gentle distraction questions without being too blunt and try to move the conversation on to another topic. It's hard to say to a child 'imagine what it must be like', but it really is all about developing their empathy.”

Fond memories aren’t off-limits. “If the child is talking to a grandparent, you might suggest they talk about the good times they've had together, a funny story they share, a pet that they both know, a person they're a fan of, or a sport they're both interested in. Talking about common interests can break down patterns and will often give them something that they can both genuinely enjoy. Photographs together can be a great prompt. The person's long-term memory tends to be okay, it's usually their short-term memory which has gone.”

Staying in touch is worth it. “Try to keep the relationship going, have fun together as a family, and while dementia might affect their information recall and their memories, it does not affect their ability to feel emotions. Often for children it's enough to be with a grandparent and in their space.”

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