Young adults caring for parents with dementia sacrifice their freedom and youth

In the opening scene from the documentary Much Too Young, Kathryn is behind the camera, filming her mother Patricia.

She asks Patricia if there is any advice she would offer to someone else who is "going through it."

"It" is early-onset Alzheimer's disease.

"I can't … right now … I don't feel that I'm any different than I was two weeks ago or two months ago," says Patricia, wiping tears from her eyes.

Patricia was diagnosed with Alzheimer's disease at the age of 55. Of the 747,000 Canadians currently living with cognitive impairment, only 10 per cent are diagnosed under the age of 60.

Patricia's diagnosis has unquestionably changed her life, but it's also changed the lives of her children.

For myself and my family, that was nothing that we actually understood could happen. That someone could get diagnosed [under 65].- Christopher Wynn, co-director,

That's the focus of Much Too Young, which documents the stories of four young people who now help take care of a parent living with dementia.

The film is directed by Christopher Wynn and Russell Gienapp, and has its world premiere screening at the Hot Docs Ted Rogers Cinema in Toronto on May 25th.

As Wynn tells Day 6 host Brent Bambury, he has his own family experience with dementia.

"My father had early-onset Alzheimer's," he explains. "For myself and my family, that was nothing that we actually understood could happen. That someone could get diagnosed [under 65]."

Four families

After helping to care for his own ailing father, Wynn travelled across Canada discussing the illness. And through those trips he learned that there were other families going through the same experience — including much younger families.

I think, still, the general public thinks that Alzheimer's only happens to older people.- Christopher Wynn, co-director,

"That's when I began to think about this film," says Wynn, "focusing on families dealing with Alzheimer's, but at a younger age."

"I think, still, the general public thinks that Alzheimer's only happens to older people," says Wynn.

The film follows the stories of Kathryn, Kathleen and Chris, all in their twenties, as well as Aurelia, who is 13 years old.

Kathleen's mother Moira was trained as a chemical engineer before being diagnosed, and now her husband and children are her primary caregivers.

Chris struggles to cope with his father Peter's care. And Aurelia has a hard time coming to terms with the fact that she and her 51-year-old father no longer have the close bond of her younger years.

When child becomes parent

Of the families in the film, Patricia is the only parent at a later stage of the disease. Before becoming ill, she had been a school teacher. In the opening scene of the film, shot just after her diagnosis, Patricia is lucid and quite animated.

Six years later, the illness has clearly taken a toll on Patricia. She cannot be left alone. Kathryn and her two brothers all take turns spending the night at Patricia's house, and spare time to give their father a break as the primary caregiver.

Even with her siblings involved, it's clear that caring for her mother is emotionally exhausting at times for Kathryn.

In one scene, she is getting her mother ready for bed and is trying to brush her teeth. Patricia is uncooperative. She raises her voice and swears, but through it all, Kathryn maintains her patience and composure.

It is only after her mother is finally in bed that the camera captures Kathryn quietly crying in the kitchen.

There is a similar, albeit less emotional scene between Kathleen and Moira, as Kathleen tries to coach her mother while she sets the table for dinner. Moira struggles to understand what it means to put a drinking glass beside each plate. Kathleen calmly explains the process several times until the table is set.

Unlike Wynn, his co-director Gienapp has not had a family experience with dementia. Witnessing the disease for the first time, he was struck by the patience in every family.

"Patience was the only thing that I could see that would keep anybody together in that situation," says Gienapp. "I saw these young people, again and again, experience patience that was way beyond the level that you would expect from a 20-year-old."

Finding support

There is a cost for each child taking care of their parent, emotional and otherwise. For Chris, who works in a lab, there are concerns that his career will be put on hold.

For younger people in particular, there is a lack of support as the majority of children taking care of parents with dementia are much older, by decades. That leads to a feeling of isolation.

"They're not going to go to a support group, because the support groups are filled with people who are in their sixties," says Wynn.

The children are also cut off from their friends because, simply put, it's a situation few of their friends can relate to.

They're great kids and they're very mature for their ages, but they tend not to open up to friends.- Christopher Wynn, co-director,

"They don't invite friends over. They don't tend to go out a lot," explains Wynn. "They're great kids and they're very mature for their ages, but they tend not to open up to friends."

For that reason, in part, Kathryn helped create The Memory Ball. It's an annual event in Toronto that raises funds for Alzheimer's while also connecting young people affected by the disease.

"For one of the families in the film, this was their first time ever meeting any other kids their age [dealing with Alzheimer's], and I think that was a big step for them and I know that they've kept in touch," says Wynn.

Going back  

Much Too Young will have its world premiere screening in Toronto on May 25, 6pm at the Hot Docs Ted Rogers Cinema. 

There will be a post-screening discussion with family members from the film, as well as Wynn and Gienapp.  

In September, the film will be broadcast on TVO in September. For the fall release event, the filmmakers will return to the families for updates, providing a virtual reality element.

"It's hard to experience unless you live it, and this is what we're trying to do with the VR, is bring the viewer that much closer — to give them more of an experience to try to understand more about the disease," says Wynn.

To hear Brent Bambury's full conversation with Christopher Wynn and Russell Gienapp, download our podcast or click the 'Listen' button at the top of this page.