Two striking examples of early-onset dementia show just how much more difficult the disease is on families — and how much harder it is to get help and health care.
An otherwise perfect driver goes through a red light, but he insists it was green; a mother-daughter relationship becomes increasingly volatile; a wife suffers a momentary inability to remember the littlest things — like writing her own name.
All brief lapses are often chalked up to stress, depression or a bad day, but for people in their 40s, 50s and early 60s they can be signs of something more serious to come.
Early-onset dementia is a form of the disease that strikes people before the age of 65, but it is frequently misunderstood and written off by family members, even doctors, as some other ailment.
“There’s this assumption that oh, you’re 40 years old, you can’t have early-onset dementia,” says Marija Padjen, chief program officer at the Alzheimer Society of Toronto and founder of its first early-onset support group. “Even at the very, very beginning, trying to get a diagnosis is a struggle for a lot of people.”
Early-onset patients face a unique battle: memory loss and behavioural changes are often compounded by the difficulty in getting a diagnosis, dementia drugs that may not be covered for people under 65, and a struggle to fit into long-term-care facilities where most people are older than 75. The disease can progress faster in early-onset patients, although the science is not yet definitive.
There’s this assumption that oh, you’re 40 years old, you can’t have early-onset dementia,
“The one uniform difference is age,” says Dr. Morris Freedman, director of the Sam and Ida Ross Memory Clinic at Baycrest.
Renata looks after her husband, Richard, 60, on weekends as he lives in a nursing home through the week. Three years ago he was diagnosed with early-onset dementia.
When the disease strikes early, it also means people are burdened with caring for parents and siblings at a much younger age.
Claire Poirier was 14 and her sister Carolyn 19 when their mother, Jane Holland-Poirier, was formally diagnosed with early-onset Alzheimer’s, which starts with mild memory loss and progresses to an inability to carry on a conversation and react to the environment. Jane was 54, although her daughters say she was exhibiting symptoms a couple of years before that.
Once a successful, independent businesswoman with more than a decade to go before retirement, Jane spent the entire summer of 2008 crying. She struggled to leave her bed.
Jane had watched her own father die of Alzheimer’s two years earlier; she saw how it slowly ate away at his brain.
She knew then, her daughters say, that the disease many attribute to old age was going to take everything from her.
The knowledge “killed her,” says Carolyn.
Jane watches Mamma Mia! almost daily.
Now 60, Jane is confined to their North York home, clapping in rhythm to Mamma Mia!, a musical she has watched almost daily the past six months. She remembers the beat of ABBA songs, but not her daughters’ names or how to feed and bathe herself.
More than 35 million people live with dementia worldwide, and the World Health Organization has identified it as a public health risk. The number of people affected with the irreversible disease is set to double by 2030 and more than triple by 2050.
In Ontario, 200,000 are afflicted with the illness, with an estimated one in six, or 15 per cent, suffering from early-onset dementia.
It’s that small subset of the population Jane belongs to that often goes unnoticed.
“Everything is depression,” says Dr. Carmela Tartaglia, a neurologist working with the Memory Clinic at Toronto Western Hospital. Tartaglia is also part of a global team working at the University of Toronto’s Tanz Centre for Research in Neurodegenerative Disease.
“They can’t remember? Well, it’s because they’re depressed. They can’t think straight anymore? It’s because they’re depressed. It’s just our bias, because we haven’t been exposed (to early-onset cases).”
That lack of exposure can have particular repercussions. “A lot of them are working, a lot of them are still managing their own finances, a lot of them have younger children . . . they have a lot of responsibility,” she said. “If people aren’t noticing that there’s something changed about their ability to function, they can get themselves into a lot of trouble. We all (doctors) have cases of people who have lost everything.”
Even after the diagnosis, Carolyn and Claire say there have been many moments where Jane’s young age, at a time when the sisters themselves were growing up, made for difficult circumstances.
Going out in public with her mother has felt a little like babysitting, Claire says.
“You have to make sure someone’s holding her hand, and a year ago I’d still have to sort of yell at her and be like, ‘Jane, come on, you have to walk this way’ and everyone around looks at you like you’re 18 years old yelling at your mother to come . . . it’s just uncomfortable.”
Now that Jane is confined to the house, “she’s more manageable,” Claire says.
The denial and delays have myriad implications. In extreme cases, people squander all their money before someone realizes they have lost their mental faculties.
Carolyn, Claire and their father — who they say has had trouble accepting the diagnosis — live by a strict schedule. Jane is looked after on weekdays by a caregiver, but instead of living in a university residence or enjoying nights out on the town, the sisters come straight home each day to make sure Jane is fed, clean and well-looked after.
“We have to make sure she takes her pills, and it’s hard to have to explain how to swallow to someone,” Claire says, “as well as bathroom habits, making sure she’s clean and showered.”
It’s very different from watching their grandfather die, Carolyn adds.
“Losing a grandparent (to Alzheimer’s) feels more like the course of life; they’re at an older age . . . but the fact that she’s your mom is the clincher. You’re now her mom.”
The family made a promise years ago: when Jane no longer remembers who they are, they would look for a home to care for her. This past year, they have started the search.
Renata knows all too well the difficult decision the Poirier sisters face in relinquishing care of their mother to a nursing home.
“It’s a question of autonomy,” she says. “At what point do you start taking over?”
She struggles with the responsibility of caring for Richard — a man who is “no longer my husband” — after he was diagnosed three years ago with early-onset frontotemporal dementia, a type that affects behaviour, language skills and movement. He was 57.
In Ontario, 200,000 are afflicted with the illness, with an estimated one in six, or 15 per cent, suffering from early-onset dementia.
He had been acting strangely for a few months but had not been diagnosed. Then, one hot June day, Richard started a fire after lighting candles all over their west Toronto home. It sent Renata to hospital with second-degree burns.
A day later, she had her husband of almost 30 years committed.
“He’s not my husband anymore; he’s basically another kid that I babysit,” she said, asking that their last name not be used since not all of their friends know. “I mean, I know he’s my husband, but I just look at him as someone I’m responsible for.”
The emotional adjustment is compounded by external struggles.
Though Richard won a placement, Renata doesn’t think it’s the best fit. Her husband is young and strong, while many of the other residents — most over the age of 75 — must use wheelchairs. To keep him active, she visits daily and brings him home on the weekends. “I’ll take him out for walks; we’ll go around the block,” she says, adding she keeps a close eye. In the past, he has wandered off a few times.
The Poirier sisters’ mother, Jane, has been on a waiting list for a long-term-care facility for months. They say they’ve been told Jane’s young age keeps her from landing a priority placement, even though she has been labelled “critical.”
However, a spokesperson for the Toronto Central Community Care Access Centre said decisions about placement “have nothing to do with age.” While a doctor might have described Jane as “critical” to the sisters, it’s up to a CCAC worker to make the decisions — including taking into consideration whether the person in need has a family taking care of him or her, which Jane does.
Still, it’s a lot of work for families, and placing early-onset patients in nursing homes is a “huge problem,” says Tartaglia, of Toronto Western Hospital. She adds that one of her patients, at 51, needs full-time support yet still goes for a run on a daily basis.
“They don’t actually belong in these homes,” she says. “These early-onset, they’re stuck in a place, but they’re physically well.”