Booklet helps kids cope with parent’s dementia
Activities aimed at rising number of children living with a mother or father with frontotemporal degeneration
For eight agonizing years, June Shin watched the husband she knew slip away, taken by an early onset dementia diagnosed when he was only 47.
Compounding her heartbreak was the fear and bewilderment of their three children, who were 11, 8 and 4 when their father’s behaviour started to become erratic.
He flew into rages and became depressed. He went on spending binges and got cuts and bruises from frequent falls as his motor control diminished. He got lost taking his son to hockey, and went from being a loving dad to once laughing when his daughter fell down.
“I didn’t know how to explain anything,” says Shin, 51, of Scarborough. She tried, but most of the time the kids didn’t want to talk about his irreversible disease, known as frontotemporal degeneration (FTD). “I can’t even imagine what was going through their heads.”
At the time, there were scant resources for families and certainly nothing for children living with FTD, which accounts for roughly 20 per cent of dementia cases among those under 65, according to the Alzheimer Society of Canada. Toronto behavioural neurologist Dr. Tiffany Chow is trying to ad- dress that gap, starting with a new downloadable activity book on FTD aimed at children ages 5 to 9.
The-19-page booklet is called Frank and Tess Detectives (based on the FTD acronym). It includes word and picture searches and games kids can do on their own, with the parent who has dementia, or another adult. It also explains how FTD affects behaviour and explores the emotional impact on the household, using language a child can understand.
“Sometimes Mom can say things that make people think she’s a rude person,” explains narrator Tess. “If that happens, it helps to explain that she has a brain illness that makes it difficult to control what she says.”
The book provides “one way for the well parent to talk to the kids about what’s going on,” says Chow, senior clinician-scientist with the Rotman Research Institute and Ross Memory Clinic at Baycrest.
“It helps the children to not take it (the behaviour) personally and helps them have something they can do with the (ill) parent.”
She collaborated on the project with Toronto gerontologist and dementia specialist Gail Elliot of Dementi Ability, who works with patients by using Montessori teaching methods and has expe- rience explaining it to children.
About 500,000 Canadians live with some form of dementia. While FTD is much less common than Alzheimer’s, it is different in several significant ways. It strikes younger, and it affects the frontal and temporal lobes, which control impulsivity, language and personality. So rather than memory loss being the first symptom, FTD sparks disruptive, erratic behaviour and personality changes that can be frightening for children.
While there are few statistics on the prevalence, Chow suspects more children are being affected as a result of older parenthood and the higher numbers of men having second families later in life. She estimates at least half of FTD patients have children, and perhaps one in four have kids under 10.
She sees them in her waiting room while one parent brings the other to an appointment.
“They know something strange is going on and there’s a tension in the household, maybe outbursts or other (unusual) behaviour. It’s hard for kids not to internalize it.”
One patient changed from a jovial hockey dad to a disengaged one prone to scary rages. His youngest son, age 10, was the family member who spent the most time with him.
And it’s those kids she wants to reach through the book. Because while teens tend to have their own social networks and can find young carer support groups online through organizations like Hospice Toronto, younger children may feel alone and afraid.
Chow also plans to launch a similar book for kids who have grandparents with Alzheimer’s.
June Shin’s children didn’t have access to a child-friendly tool that could’ve helped them cope with FTD. Her husband Michael died in April 2011 at the age of 52. The kids were in their teens.
But she’s relieved there is more discussion and awareness of the disease, and now, a new tool for the youngest group affected.
“I think it’s also a way of saying, hey, you are not alone in this, there are other kids also going through it.”