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

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.”

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