Baycrest’s new, moderated e-support groups provide a sense of community and friendship for caregivers of relatives with chronic diseases.

Technical Support

Andi Wilson had never felt so alone. Her husband, Barry, 57, had been diagnosed with frontaltemporal dementia (FTD), a debilitating, degenerative brain disease. There is no cure for the patient, and as the disease progresses, little emotional respite for the caregiver. “FTD is so rare,” says Wilson, whose husband is being treated by what she calls a “phenomenal team of experts” at Baycrest. “I didn’t know a single other person who had it.” Her chest heaves with emotion as she describes the difficult twists and turns her life has taken since she first started to notice an odd decline in Barry’s behaviour several years ago. “My whole life changed with Barry’s diagnosis, and I had nobody to talk to about what I was going through. As his disease progressed, he couldn’t work; he couldn’t drive. People didn’t invite us out; our social lives changed. I was home caring for Barry full time and I felt so isolated. It is a very hard life.” Dr. Elsa Marziali, a senior scientist at Baycrest’s Kunin-Lunenfeld Applied Research Unit, has spent the last 10 years trying to address the needs of caregivers like Wilson and patients with chronic diseases. As a professor in the faculties of social work and medicine at the University of Toronto, Dr. Marziali understands how difficult life can be under the blanket of a diagnosis of a neurodegenerative disease such as dementia. Being a caregiver is unrelenting and highly stressful,” says Dr. Marziali. “Depression and anxiety are com-mon, and caregivers carry a huge emotional burden. Life changes from the moment of the diagnosis.

”Research has shown that speak-ing to people who are facing similar situations can help ease the burden on caregivers. “Caregivers are able to immediately identify with one another,” says Dr. Marziali. “That is why support groups can provide emotional relief for the anxiety, frustrations and loneliness that care-givers are often reluctant to discuss with anyone else.

”She has found that grouping together caregivers of family mem-bers with the same diagnosis – for example, Alzheimer’s, Parkinson’s, stroke or traumatic brain in-jury – and having separate groups for spouses versus adult children, allows caregivers to bond, share information, and identify with each other’s sadness, challenges and suc-cesses. It enables caregivers to want to keep their chronically ill family members at home for as long as pos-sible. By delaying their admission to a long-term care facility, even for one year, savings to the Canadian health-care system are estimated at $5.4 billion annually, according to some cost projections.

Fortunately for Andi Wilson, Dr. Marziali was developing an internet-based support program for caregivers of people with long-term degenerative diseases. Wilson jumped at the chance to be part of the research and participate in one of several of Dr. Marziali’s online support groups. Called Caring For Others (CFO), the web-based in-tervention program – which began six years ago – involves providing caregivers referred from clinical sites across Canada with access to a password-protected website where they can engage with each other via imbedded e-mail, a chat forum, and a video-conferencing group moder-ated by a professional. In addition, information handbooks about the chronic disease and its management are posted on the website.

With baby boomers being the largest group of new internet users, and most caregivers being unable to leave their loved one at home to attend face-to-face support groups, the development of an online sup-port group is timely.

“Evidence shows that our group intervention model is accessible, that caregivers anywhere in the world can access the program, that using our website is intuitive, and that any caregiver can be trained to manage the technical aspects of joining our video conferencing intervention program,” explains Dr. Marziali. “To my knowledge, it is the only online video-confer-encing support group happening in the world.”

But it is happening across Canada thanks to the work being conducted at Baycrest. Every Mon-day at 8 p.m., Wilson and six other caregivers from across the country log on to their secure, password-protected CFO site and settle in for a chat. “I was very excited to join the group,” says Wilson. “They showed us how to use the com-puter, got us set up, and once we were online, we could actually see each other.”

It turns out that participating in the program was the raft Wilson needed to stay afloat.

“We support each other and have come to care for each other. I used to blame myself for certain things,” Wilson continues. “Now I know it’s not just me; that I’m not going crazy. All of a sudden I know there’s a whole group of people I can rely on, and there’s a sense of not being alone. I am part of a community.”

The success of her online sup-port groups has Dr. Marziali excited to expand her model. This fall, Baycrest social workers will begin offering the online program to caregivers. Dr. Marziali encour-ages caregivers interested in join-ing an online video-conferencing support group to contact their local Alzheimer Society, Parkinson’s Association, or Heart and Stroke Foundation to ask whether those organizations plan to adopt an on-line program. In the meantime, Dr. Marziali has licensing agreements to enable other researchers to evalu-ate the CFO program within their service delivery systems. This would allow clinics and hospitals to assess the feasibility and costs of adopting the program.

If there is anything Dr. Marziali’s work has shown thus far, it is that she has indeed developed an effec-tive model of support for caregivers of family members with chronic debilitating diseases.

“I’m not lucky with what happened to Barry,” says Wilson, “but I am lucky in that I’m no longer alone in this. Now I always have someone to call. Because of CFO, we can laugh, we can cry, we can meet.”