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A forgotten piece of the family picture Add to ...

When David Greene was 14, driving with his father meant making sure Dad didn't run the stop signs.

"I know how to drive," Bob Greene would snipe back. By then, though, he'd often forget to put on his blinker, and he would shortly lose his licence completely. Their father-son time soon narrowed to camping and David's football games, where Bob once wandered onto the field. "At least he was there," says David, now 18.

Today, at the age of 65, his father is no longer "there" at all. It's been years since Mr. Greene recognized David as his son. By the time the former marketing professor went into a nursing home in May 2009, David had become just that "teenaged kid" who lived in their house in King's Landing, N.B. Frontotemporal dementia had turned an intelligent man into an empty presence in his family's life. In the early years, David would still make an effort.

"I'd ask my father anything, to get a hint of him." Bob would babble nonsense, but at least it was something. Now, his son doesn't visit him often. "It's just the shell of him," David says. He speaks of his father as though he has died.

They stand in the background, the children and teenagers of families trying to care for loved ones with dementia, hearing their loving grandmother curse at them, or watching their father decay in front of them. Dementia may be a disease that primarily strikes the elderly, but as Canadians marry and have children later, the number of youth confronted with dementia firsthand is only expected to grow. Yet often the family picture of dementia fails to widen to the younger members who also feel the devastating emotional turmoil of this disease.

"We need to be open with our children," says Marg Eisner, program director for the Alzheimer's Society in the Hamilton area. When counsellors conduct workshops with youth, they break down the brain, showing how damage in certain areas causes strange behaviour, so children have a scientific explanation, and know they aren't to blame. And they are careful to point out that just because a family member may have dementia doesn't mean it's in their own future.

Getting Alzheimer's worries Taylor Stevenson 12, whose father has the disease. She lives in the small town of Elbow, Sask., with her Mom while her dad is in Kamloops, B.C., so the phone is their main form of communication. Taylor can laugh at her dad's mistakes - recently he greeted her with "little lamp," when he meant to say "little lady." "He just got stuck on the 'L'," she says.

But her mom, Debbie, believes Taylor often keeps her feelings bottled up. Wanting Taylor to be informed, she took her to an Alzheimer's information session when she was 10 (raising eyebrows, she says, among the much older crowd). Taylor has read books and fundraised for the Alzheimer's Society.

"Out of the blue one night, she said she wanted to be tested," recalls Debbie of a recent conversation. They talked it over - Taylor wondered whether she should have kids without knowing; her mom explained that a test wouldn't be definitive. "I kind of want to know, but I don't at the same time," Taylor says, tearing up during a phone interview. "I will wait until they have a cure, and then I'll get tested."

Thuy Nguyen-Crawford and her husband, Darren, wanted to make sure their three children felt involved in the care of their grandmother, who has vascular dementia and lives with them part-time. They have given them jobs - Lauryn, 3, helps "Ba" with her shoes; Tyler, 6, helps his grandmother at suppertime; and Tristan, 9, helps her hook up her seatbelt. "They have all become Ba's little shadows, making sure she's okay," says Ms. Nguyen-Crawford.

But, as experts suggest, she has also learned to be specific about the symptoms of her mother's disease, specifically that she may say mean things, or act in a way beyond her control. The hardest part has been explaining to Lauryn why her grandmother sometimes tells her that she "eats like a pig." It's complicated, Ms. Nguyen-Crawford admits, to explain to a hurt three-year-old that her grandmother doesn't mean it.

Understanding is hard for adults, let alone for kids who witness a loved one disappear. It's not been easy for the Greenes, who were close to divorcing when Mr. Greene was finally diagnosed. Beverly Greene, a government health consultant, chose to keep her husband at home for as long as she could, trying to normalize his illness.

But she wonders, in hindsight, if this was the best decision: "I'm not so sure I should have taken up so much of [David's]childhood." She remembers the times David fruitlessly sought out his father's praise, and regrets not insisting that her son go to counselling so he could talk freely with an objective party.

The last months were especially rough, with his mom working full-time and his father incontinent. David, who has since moved out and is trying to finish high school after taking time off, has some anger about this: "No son should have to change his dad's diapers," he says.

To parents, he offers this advice: "Be straight-up. [Kids]need to know what's going to happen." And he shares his own regret: "Treasure every moment. Looking back, I wish I had spent as much time with him as I could."

For age-specific books and resources to educate children and teenagers about dementia, please visit the Globe and Mail's Dementia project online at tgam.ca/dementia.

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