How to help kids maintain a close relationship with a loved one who is living with dementia

One summer day, seven-year-old Eva Schiefler went outside to water the plants and was delighted when her granddad turned her chore into a family water fight. On another occasion, her granddad transformed a game of carpet bowling into a game of his own invention — bowling soccer. “Everything with my granddad is a surprise,” says Eva, who is now 12 years old. For those people who know and love him, the mischief, playfulness and laughter have always been a big part of who her grandad is.

Eva’s granddad, John Poole, was diagnosed with vascular dementia in 2012. As his illness has progressed, his daughter Krista Poole has made sure that her daughters, Eva and 15-year-old Sophia, remain involved in his life. Since John was a very involved grandparent, this was a natural thing. Krista and her husband, Mark Schiefler, knew from the beginning that they wanted to be open with their children about their granddad’s illness.

“As a family we made a decision early on to keep life as normal, active and happy as possible for my dad. We didn’t want him to become defined or limited by his dementia diagnosis. Instead, we wanted to be open about it and to push boundaries to normalize dementia for those around us,” she says. “We informed ourselves; we talked a lot as a family about what was most important and what we found hardest. Sophia and Eva have definitely been on this journey with us and with Dad.”

No matter how John’s illness has changed his circumstances, the family has kept him closely connected, but it’s required them to be adaptable. For instance, they needed to rethink their fun, noisy dinner gatherings when it became clear that John was overwhelmed in these situations. When John, now 80, lost his ability to communicate clearly, the family needed to find new ways to communicate with him.

“We focus on making sure he has the best quality of life, and this means meeting him where he is at. He still smiles when we play balloon volleyball together, he likes getting outside and saying hello to passersby. There are still things we can enjoy together,” Krista says.

The Alzheimer Society of Canada estimates that 564,000 Canadians are currently living with dementia, and that 1.1 million people are affected directly or indirectly by the disease. Compared to other serious illnesses like cancer or multiple sclerosis, a dementia diagnosis can be a source of shame and stigma in a family; sometimes even the person who receives the diagnosis is reluctant to disclose or discuss it. When a disease is poorly understood by adults, it’s no surprise that kids can get left out entirely.

According to Sarah Salus, director of philanthropy and engagement for the Alzheimer Society of Calgary, reluctance to discuss dementia is rooted in a widespread lack of education about the disease. It’s a complex disease and sometimes people are not sure how to explain it to children.

“Some people are inclined to brush off a diagnosis or sweep it under the carpet,” she says. “If you try to hide it from your kids or prevent them from seeing that person [living with dementia], it is going to be weird for them.”

Krista included her daughters from the get-go, and, as things became more complicated, used a mixture of expert advice, common sense and advice from peers who’d had similar experiences. She says dementia-education resources helped the family overall, but didn’t really help inform them in how to involve their children. “I don’t think I ever found a resource for children around dementia that was as valuable as our lived experience,” Krista says. Her family has never focused on what her father is losing: John is still John.

“My dad still loves his family, a good meal and laughing. He still loves being active. That just looks very different now,” she says.

Gail Elliot, a leading gerontologist and dementia specialist, is the founder and CEO of DementiAbility Enterprises Inc., an Ontario-based organization that provides dementia-education resources including workshops, books and online tools for professionals, caregivers and people living with dementia. In 2012, Elliot co-authored an activity book called Frank and Tess – Detectives! for children aged five to nine who have a parent with frontotemporal degeneration dementia (FTD). The book includes age-appropriate scientific and behavioural information. Elliot says a good place for families to start is at alzheimer.ca, which has some introductory information aimed at children.

Dementia is generally defined as loss of memory, but Elliot points out that memory is complex. That’s one reason why it’s difficult to come up with a one-size-fits-all best practice for teaching children (or indeed adults) about diseases that affect cognition — because these diseases manifest differently in different people. Typically, for a person living with dementia, their declarative memory (recalling facts and events) gets worse as it progresses, but procedural and emotional memory is usually spared much longer. Elliot says what a person was like in the past will usually be very similar to how they are in the present, depending on where and how severe the damage is in the brain. They still love the same people and can often perform practiced skills such as reading, baking or working on a car, but, as Krista observed, these skills may look different or take longer.

Elliot uses what she calls the WOW model to teach people how to interact with someone living with dementia in a positive way: Who is the person, past and present? What are your Observations? What are you going to do?

In this, children may have a natural advantage. Salus notices this ability to be present in her own sons, ages 10 and 12, when they interact with their great-grandmother, who is living with dementia.

“Kids live more in the moment than adults do. Adults are always thinking, ‘What if I say the wrong thing?’” Salus says. “People with dementia tend to live more in the moment, too.”

Krista has also made this observation. Her daughters are less nervous than the adults are about trying new things and laughing when their granddad is around, and their laughter is contagious.

“The kids are often showing us what my dad is capable of still doing,” Krista says. As Eva puts it, “It’s kind of just seeing what our granddad likes to do, rather than forcing him into anything.”

Kids can even help ease some of the frustration that accompanies cognitive decline. Krista’s daughter Sophia was often better than adults in the room at understanding John when his communication challenges began.

“When he used an unusual word for something, we were stuck on that word, while Sophia was more in tune with the sentiment,” Krista says. “She would say something like, ‘Grandad’s sock is bothering him,’ and then a knowing look would travel between them. My dad looked so relieved that someone finally understood him.”

Sophia says she may have been less conscious of changes in her granddad than the adults were, which made it easier to handle what came up. “I wasn’t really looking for a difference,” Sophia says. “Eva and I have grown up with the idea that Granddad does have dementia. It’s what we’re used to.”

While there is no single way to involve children in the life of a person with dementia, Elliot says one thing is certain: when young people and people living with dementia interact, magic can happen.

Salus agrees. The Alzheimer Society of Calgary is working with high schools to get young adults to volunteer in the art program of Club 36, a day program for people with dementia. “That kind of experience is so valuable,” she says.

Salus feels hopeful when she sees younger children donating their birthday money to organizations like hers and weaving empathy and philanthropy into their lives. Dementia awareness is rising — and that’s good news for everyone, including children. [ ]