How to talk to your kids about dementia

When they were young school-agers, Sophie and Hailey Hanson, of Toronto, loved visiting their baba Estelle. She always asked her granddaughters what they learned at school and how they felt about things. A talented musician, she often serenaded the girls on piano. And she never missed their dance or music recitals.

But Estelle started to show some troubling symptoms. “My mom seemed self-centred and had trouble following conversations,” says her daughter, Marla Schacter. An experienced baker, Estelle called one day and asked what icing sugar was. “That’s when I knew,” says Schacter. Estelle was diagnosed with Alzheimer’s at age 75.

“In the early years, my kids understood their baba was sick with Alzheimer’s, but they hardly noticed,” says Schacter. But recently, while spending a week together on a family trip, Hailey, now 11, was shocked by the changes in her grandma. “She didn’t know who I was,” Hailey told her mom. “She thought I was a boy. What’s wrong with her?”

“It’s scary and confusing for them,” says Schacter. “I see them backing away. They’re apprehensive, not knowing if she’ll know them one day to the next.” Family outings like restaurant visits are no longer doable. “How can I include everybody? How can I make this work for my parents and my kids?” she asks.

Many other families are facing the same dilemma. In Canada, more than 500,000 people have Alzheimer’s or some other form of dementia. This number will more than double in 25 years. Currently, 17 percent of Canadians have someone with dementia in their immediate family, says Tiffany Chow, a senior scientist at the Rotman Research Institute at Baycrest in Toronto. So it’s increasingly likely that kids will know a loved one with with the disease.

In a 2010 study at the University of Oxford, researchers explored how dementia affects the grandparent-grandchild relationship. The good news: They found that kids can continue to have a positive relationship with their grandparent. However, fostering this interaction takes effort on the part of the parents — not always an easy task, especially if they are themselves struggling to cope with the grandparent’s illness.

We asked experts and families to share their stories and strategies.

Coming up: How to explain the brain >
Explain the brain

Chow says you can explain dementia to young children by saying: “When you’re sick, you might have a fever or a cough. Grandma’s brain is sick. She has an illness that affects how her brain works.” Using pictures of the brain, children’s books, and online brochures and videos can be helpful.

When Kathryn Harrison’s mom was in the early stages of Alzheimer’s, her kids, Tristin and Rory, were small. “They just enjoyed that Nana was fun to play with,” says Harrison, of Toronto. “Having young kids was helpful for this disease. I had playdough, crayons and bubbles at home and Mom was becoming more childlike. They never judged her. When Nana took off her shirt in the yard, they thought it was no big deal.”

But Harrison started getting “tough questions” when her daughter was five. “We talked about memory — that we could remember what we had for supper yesterday, but that Grandma couldn’t. I explained a lot about how the brain works,” she says. “As the disease progressed, my daughter couldn’t understand why Grandma couldn’t move her body anymore. But I always told her that she was still Nana underneath.”

Kids need to know that their grandparent still cares about them. Gail Elliot, assistant director of the Gilbrea Centre for Studies in Aging at McMaster University in Hamilton, suggests saying, “Grandma’s memory is not what it used to be. She needs your help. She may not use your name, but she still gives the same great hugs. She still remembers the love she has for you.”

Continue reading for more tips >
Help them connect

Harrison used photos and videos as a way for her kids to maintain connection throughout the illness and after her mother’s death. She keeps a book of photos of Harrison’s mom walking in the garden with her grandkids. “It was one of the last times my mom was interacting,” says Harrison. “This book gets read a lot.” Tristin, now eight,  also cherishes a video showing her (as a toddler) being read to by her grandma — before Alzheimer’s. Harrison’s advice: “Videotape often earlier on. The person with dementia will change so much.”

Doing low-key activities together also helps strengthen the bond. When Helen Lammers-Helps’ children were five and six, they’d drive two hours from their home in New Dundee, Ont., to visit her father (with Alzheimer’s) and mother. “We’d drive to the bridge to get ice cream and watch the ships go by,” she says. Since her father always enjoyed puzzles, they brought simple puzzles of rural scenes to do together.

When he moved to a nursing home in his last few years, they continued to visit. Often, they brought their family dog, sat on a bench outside and shared homemade cookies. One time, they watched a videotaped performance of Lammer-Helps’ son in a play. “My dad lit up when he heard some familiar Christmas music on the tape,” she says. As teens, her kids wondered why they were doing things with their grandpa that he wouldn’t remember. “It was still worth the effort to make a pleasant experience that he enjoyed in the moment,” says Lammers-Helps. “And I know we did what we could.”

Up next: Continue to celebrate >
Continue to celebrate

While spending quiet time together is important, so is continuing to mark special family days. “Don’t stop celebrating events like holidays and birthdays,” says Chow. “This would isolate your family and cause more of a sense of loss.

Decide how you’ll make the holiday work for you. Maybe everyone visits the nursing home in the morning and returns to Grandma’s house later for the usual celebration. Or maybe you need to take the person with dementia somewhere else so that everyone can enjoy dinner. You need to connect with each other.”

If the grandparent comes for a visit, you and the kids can prepare simple “cues” to help him feel more comfortable.

Make everyone name tags with a large (24-point) black font on white background. Adults with dementia retain their ability to read, but their vision worsens with age, explains Elliot. Include who that person is, for example, Jane — Joe’s daughter. Also place signs with large print around your house to help Grandpa navigate: for example, This way to the bathroom.

You could even prepare a clearly printed itinerary of the day: 12 noon Lunch at home. 2 p.m. Get picked up for holiday dinner at Sue’s house. 4 p.m. Dinner. 6 p.m. Go home. “If Grandma keeps asking when she’s going home, remind her to look at her schedule,” says Elliot.

Continue reading for more tips >
Acknowledge feelings

While being with their grandparent, kids can witness some disturbing interactions. Once when her son Rory was crying, Harrison recalls her mother shouting, “Would someone shut that kid up!?”

“If a grandparent says something hurtful to your kids, stick up for them,” advises Chow. “Say, ‘That’s not a nice thing to say,’ so they can see you’re on their side. Afterward, debrief the situation. Validate their feelings. So if your child says she is angry, respond, ‘It’s OK to be angry at what she said. I am too.’ If visits become really upsetting for your child,” says Chow, “you might consider letting her stop visiting for a while.”

When Harrison’s daughter Tristin was six, her grandma moved to a nursing home to get the care she needed. “Tristin got upset when I told her that Grandma couldn’t get better,” says Harrison. “In her world, everything is fixable. Both my kids were sad that they never got to know the real Nana.”

As Schacter’s girls continue to see their baba change, they too express sadness. But they’ve also learned to find the humour in situations. Recently, after they received money as a gift from Grandpa, their grandma advised them to cool it in the fridge so it would work better. “My mom was confusing cooking and money,” says Schacter. “Afterward, my girls and I laughed about it.”

After eight years on the Alzheimer’s journey with her mom, Schacter offers this advice: “Remember to give your kids special alone time with the well grandparent too. You need to guard that relationship.” And most of all: “Have open communication and don’t be afraid to laugh, to cry or to get angry.”

Learn more about Alzheimer's
• The Alzheimer Society (alzheimer.ca) in Canada provides information, counselling and support groups to help people affected by Alzheimer’s and related dementias.
• The Alzheimer’s Association (US) has online videos about Alzheimer’s geared toward kids and teens.
• Still My Grandma, by Véronique Van den Abeele, depicts a young girl’s close relationship with her grandmother who has Alzheimer’s.
• When Dementia Is in the House is a website for children and their parents.