"There's no road map for this disease and how to cope with it," says Sandra Atlin, who found herself desperate for help after her husband Gordon developed Alzheimer's disease three years ago, a condition that began with mild cognitive impairment five years earlier.
"I felt overwhelmed by what was happening," says Atlin, 78. "His short-term memory has completely gone, utterly. So he does not remember now what he did two or three minutes ago ... He can't make decisions anymore, not even about what he eats."
Atlin had attended a couple of support groups, but it wasn't until she discovered an innovative program at Mount Sinai Hospital in Toronto that she learned how to better cope both with her 86-year-old husband's illness and the roiling emotions engendered by her new role.
The program, begun about four years ago at the hospital's Reitman Centre, is designed to address the needs of a husband or wife providing home-based care for a spouse with dementia, or for an adult child looking after a parent.
The 10-week course typically includes about five caregivers, who come together for an intensive 2 1/2-hour session once a week, led by trained professionals, such as a psychiatrist, social worker or psychologist.
Besides becoming versed in the complexities of Alzheimer's and other dementias, caregivers are taught how to problem-solve in an "organized and effective fashion," says program leader Dr. Joel Sadavoy.
The approach is aimed at helping individuals cope with the burden of round-the-clock caregiving, from the endless day-to-day decision-making to feeling physically and emotionally drained.
During the sessions, caregivers are trained to crystallize the nature of a problem, strip away the related emotion, then come up with potential solutions, says Sadavoy, head of community and geriatric psychiatry services.
"Someone might say: 'I'm overwhelmed by my husband's dementia. I feel like I have no life and I have no time for anything,'" he says.
With the help of program leaders and other group members, the caregiver is asked to keep whittling down the problem to get to its core.
"What comes out is: 'I would really like to be able to go out two afternoons a week from 2 until 5 to be with my friend Jane and my friend Harriet,'" Sadavoy says.
"Once you get to that level of detail, then it becomes possible to actually find solutions. What you can't find solutions to is the overall feeling of 'I don't know who I am anymore and I have no life.' That's how problems usually come out, highly charged emotionally, with a sense of ovewhelmingness and complexity.
"The goal is to teach the method of thinking and at the same time to create in the caregiver a sense of mastery and control."
What's novel about this program is the use of actors — called patient simulators — who role-play scenarios with caregivers as a means of working out specific issues raised by individuals in the group.
For Atlin, dealing with her husband's family doctor was frustrating and demeaning because he tended to dismiss her concerns and was loathe to answer questions about her spouse's medical care.
With the actor stepping into the role of the doctor, Atlin was able to practise how she would handle future interactions.
"I got some advice and some practice on how to approach him, and I got the courage, because when I did approach him, in reality, he didn't like it a bit," she says. "I got the courage to leave him. And I don't know how I would have handled that without it.
"I had the opportunity to practise how to be straightforward and strong with this as my husband's advocate. And we now are with a much better person for him — and for me."
Atlin also learned how to react more effectively to her husband's altered behaviours. Like many people with dementia, he often exhibits apathy, though thankfully, she says, he is not physically or verbally aggressive.
Role-playing helped her find a way to get her husband out of bed on those mornings when he was determined to stay put.
"I know he likes to help me, even now. So I would say, 'Well, can you help me make breakfast?' And he would reply more positively to that approach, instead of 'Come on, get out of bed. Your breakfast is ready.'"
Sadavoy says the group lets caregivers feel connected and understood in a "safe place."
"Caregivers are very lonely, actually," he says. "Almost all of them experience a sense of loneliness in the role because no matter how much other people want to understand, nobody really knows what it's like unless you're right there on the spot in the midst of it."
Knowing how much the course had helped her, Atlin approached her rabbi about starting a similar program at Toronto's Holy Blossom Temple. Several health professionals and an actor in her congregation volunteered to be trained by Sadavoy's team, and a 10-week course for caregivers is now provided at the synagogue.
A few similar programs are also in place elsewhere, including one provided through the Chinese Geriatric Community Services of Calgary and the Yee Hong Centre for Geriatric Care in Toronto, and Sadavoy would like to see the course further expanded across the country.
That notion may get a boost with the recent launch of a program for working caregivers, funded by a $2.84-million grant to Mount Sinai from the federal Social Development Partnerships Program.
Sadavoy's team has specially designed the course for Canadians who are juggling a job and the care of a loved one at home, a double-barrelled role that can lead to poor work performance as well as an elevated risk of depression and anxiety.
The Working Carers Program is being delivered by Ceridian Canada, which provides health and work-life support services to employees at client companies.
"This was a great concept for us and a great project to get involved in because it offered an opportunity to reach these individuals before they suffer some challenges at work or at home, or some breakdown in day-to-day living and functioning," says Estelle Morrison, Ceridian's vice-president of clinical and wellness services.
The Bank of Montreal is the first to offer the course to employees, initially in the Toronto area, as part of a five-year pilot project.
Morrison says the plan is to roll out the program to other companies across the country. Courses in French and culturally appropriate programs in other languages are also being considered.
A 2012 Statistics Canada study found 28 per cent of — or eight million — Canadians aged 15 or older were caregivers to family or friends with various long-term health conditions, including dementia. Sixty per cent of those were employed.
About four in 10 employed caregivers said they arrived late to work, had to leave early or take time off during the day to care for their ill family member or friend, the report found. That figure rose to more than half for those providing 20 or more hours of caregiving per week.
"One of the things with dementia is you don't know what every day is going to look like ... every day may bring a new challenge or a new situation that was not expected or predictable," says Morrison, noting that some working caregivers end up taking a leave or quitting their job because they can't cope with the dual demands.
Sadavoy says many caregivers who work end up having to modify what they're doing on the job to deal with their role at home or vice versa. "So they're always under this squeeze."
Although retired from her career as an adult educator, Atlin has needed to seek periodic help from personal care workers so she can get some respite from 24-hour caregiving.
But asking for help was difficult, in part because it brought on feelings of guilt and a sense she wasn't doing enough, she says.
What ran through her head was: "I should be able to deal with all this. I know Gord best. I should be able to keep him comfortable, keep him happy. And I shouldn't have to ask my kids or anybody for help."
Atlin says the caregivers course helped her deal with that guilt.
"I think the problem-solving especially made me understand that if my problem is guilt, there are ways I have to get over that because that doesn't help me or Gord."
Without the program, she says, "I honestly don't think I could have kept it going this long."