Michiomi Kabayama has always cut an impressive figure: A multilingual physicist and a gourmet chef who, to relax, would produce complex origami figures such as jaguars.
But the most attractive trait of the meticulous polyglot was his personality, says Kathlene Willing, his wife. "He was always mild-mannered, polite and really sweet."
A few years back, though, Mr. Kabayama began to change: He had trouble following recipes and couldn't get his mind around paper sculptures any more; he began to drink heavily and was prone to sullenness and uncharacteristic outbursts of anger. They were classic signs of dementia, likely brought on by a series of mini-strokes.
Mr. Kabayama, although in his early 80s, remained spry, so he didn't need a lot of assistance with tasks usually associated with caregiving, such as bathing, dressing and going to the toilet.
But Ms. Willing, a school teacher, recognized that she needed help nonetheless, especially in dealing with the emotional upheaval posed by the disease.
"A caregiver is like a frog in slowly boiling water," she says. "You don't always recognize what's happening to you."
The physical aspect of caring for someone can be demanding, says psychiatrist Joel Sadavoy, a dementia specialist at Toronto's Mount Sinai Hospital, but it pales in comparison with the toll taken by dementia's "behavioural disturbances." Caregivers see loved ones fade away mentally and physically, and have to cope with ever-escalating challenges such as wandering, insomnia, outbursts of violence, incontinence, hallucinations and loss of verbal and motor skills.
Given the pressures, it is no wonder that caregivers have rates of depression and suicide far higher than those in the general population, as well as higher rates of physical illness and premature death - many spouses pass away soon after their partners.
Most of the problems are related to stress. In fact, 40 per cent of family members caring for a loved one with dementia suffer from signs of mental distress, according to a new study from the Canadian Institute for Health Information.
Ms. Willing turned to Mount Sinai's Cyril & Dorothy, Joel & Jill Reitman Centre for Alzheimer's Support and Training at Mount Sinai Hospital, which offers a unique hands-on, skills training developed by Dr. Sadavoy to focus on emotional support.
The 10-session program features small groups of caregivers (up to six) who do group therapy and then problem-solving using actors who re-enact scenarios from their daily lives. (The care recipients meet separately with an occupational therapist and they also learn coping skills.)
In developing the program, Dr. Sadavoy studied research on the subject extensively and concluded: "Nothing will be effective unless the caregiver is supported emotionally."
As a result, "everything we do is about reducing tension and stress in the relationship," he says of the approach, which involves basic education about the disease, allowing exchanges between people with similar circumstances and, above all, teaching problem-solving skills.
Ms. Willing says the program was a godsend because it helped her understand that her husband "wasn't being perverse and difficult; it was the disease."
That may seem obvious, she adds, but, when caught up in the day-to-day demands, you can lose perspective so coping skills are essential. "We began to communicate in a different way. I don't get angry any more. And when he's angry, I understand he's not angry at me, he's angry at the disease."
Mr. Kabayama changed too. He no longer drinks and is much more emotionally stable, even though the disease continues to progress.
While her formal program is long ago complete, Ms. Willing remains in touch with the Reitman Centre and other members of her group, and says it is helpful to know that she can turn to them for support. "We're all at different stages, so I can see what's coming. It's not exactly comforting, but at least I'm prepared."
David Harvey, government relations officer with the Alzheimer Society of Canada, says that, given the rising tide of dementia (today's 500,000 cases are expected to reach 1.1 million in a generation), preparation is just what's required.
At least one in five baby boomers can expect to fall prey to dementia, and dealing with that requires a plan, Mr. Harvey says.
"We need to create the same framework in the later stage of life as we have in the first stage of life," he says, referring to the way society accommodated the boomers and their offspring with policies, programs and a massive investment in daycare, schools and recreational facilities.
"We are overdue for this type of social change for families with frail, elderly parents."
That includes broad-based education programs, training for caregivers, more geriatricians, adult daycare and respite care, tax breaks and workplace policies that adapt to caregivers as they do to new parents, and an investment in appropriate care facilities.
Mr. Harvey says that having a strategy is essential for economic as well as social reasons. A report the Alzheimer Society published this year estimated that, by 2038, dementia will cost the Canadian economy a staggering $153-billion a year, including a huge jump in health-care services, specifically the demand for institutional care by overwhelmed caregivers.
But the report also says the number of people with dementia cared for at home will rise from 55 per cent today to 62 per cent - an additional 510,000 people.
Care in the home
One way to lessen the financial blow - and to ensure a good quality of life for those with dementia - is to invest today in programs that make it possible for families to care for their loved ones in the home, says Neena Chappell, the Canada Research Chair in Social Gerontology and a professor in the Centre on Aging at the University of Victoria.
"One of the great myths out there is that, if we offer support, family members will … walk away," she says. "The truth is that families provide care very willingly but, because of the lack of support, they can't always cope."
Dr. Chappell says the key response to the rise in dementia (and other chronic illnesses common among the frail elderly) is to invest in comprehensive universal home care and thus keep people out of institutions much longer: "Let's give people help to keep grandma at home."
There is a place for institutional care, says William Reichman, chief executive officer of Baycrest, a Toronto facility that specializes in care of and research on the elderly, but it is neither humane nor efficient to warehouse people with dementia.
"The number of people with dementia is expected to double but we can't afford to double the number of beds," he says. "And even if we had the money, it wouldn't make sense to do so."
Dr. Reichman notes that between 50 and 60 per cent of people with dementia end up in institutional care, for about three years on average. But the vast majority also suffer from at least one other physical ailment, and that's usually what forces them to leave the family home. "It's physical frailty, not cognitive frailty."
He said it's not realistic to eliminate institutions altogether; the goal should be to reduce the length of stay by raising the level of care in the community (from homecare services to better transport for those with disabilities).
At the same time, Dr. Reichman says that institutions must improve, providing more specialized care, ideally in a homelike setting. Currently, almost all institutions maintain rigid feeding and sleeping schedules, something that is antithetical to those with Alzheimer's. "We need to pay more attention to their lives than their meds."
Howard Bergman, a professor of geriatric medicine at McGill University and chair of an expert committee that produced a much-lauded report on dementia care for the Quebec government, says the needs of patients and caregivers are intricately intertwined.
"The best way to help caregivers is by vastly improving accessibility and responsiveness of the health and social-services system to the needs of their loved ones," he says.
His committee not only recommended creating Alzheimer's support centres to help caregivers but making the system more responsive by providing a 24/7 dementia hot line. Things can go off the rails in a crisis, he says, so "caregivers should be able to pick up the phone and get answers in a quick, non-complicated way."
He also stresses that, beyond improved services, political action is what's really needed to improve the situation: "People basically know what needs to be done - organize the system in a coherent fashion, coherent for caregivers and coherent for patients."