Nancy Blezy was intrigued when she heard about a cafe opening in a Nova Scotia community that would cater to Alzheimer’s patients and their families.
As a registered nurse in a rural part of the province, she had too often seen the isolation that patients experience with their diagnosis and deteriorating condition.
As the child of someone with dementia, she had watched her parents lose some of their social connections as her mom’s situation worsened and her father’s stress rose as he cared for his wife.
Blezy, a nurse manager with a home-care company in the Annapolis Valley, and her colleagues knew there was a need for some sort of social outlet for those suffering from dementia and their families but were unsure what that might look like.
Then she learned about Canada’s first Alzheimer’s cafe in nearby Antigonish.
“As soon as I heard about it, I knew this was it, that this is what we had been looking for,” she said from Kentville.
“I wanted to be able to get them together, just to have somewhere they wouldn’t feel like they were being lectured or being singled out because they were struggling with communication.
“Having people find recognition, support and acceptance are huge components to alleviating that sense of isolation and aloneness that really does accompany this disease.”
Blezy plans to open two Alzheimer’s cafes this September in Kentville and Greenwood, carrying on a movement that started in Europe in 1997 and is slowly taking root in North America.
The intent is to provide a non-institutional space for people with dementia, their families, caregivers, experts and anyone in the community to socialize with drinks, snacks, entertainment and information.
Elizabeth McGibbon, who helped start the first one in Antigonish after one of her nursing students brought the idea to her, says the cafes are intentionally informal but do have an educational component.
Her group has held six cafes, attracting about 40 people each time.
McGibbon said the cafes allow people to get advice from professionals and peers on dementia’s common challenges, such as a patient’s diminished interest in things they once loved, depression, coping with stress and the stigma associated with the condition.
More importantly, it reduces the seclusion associated with dementia, which can hasten mental decline.
“One of the main goals is to decrease the isolation that people with dementia and their families experience,” the nursing professor said from St. Francis Xavier University in Antigonish.
“Even though dementia’s well known, there’s a social stigma to bringing your mom or dad with dementia out into the public and this is a safe place.”
The cafes set to open in the Valley will follow a similar format, operating for about two hours once a month in a casual, community setting with small tables much like a regular coffee shop. The difference is that staff with dementia training will circulate in the crowd and a guest speaker will do a presentation on a different topic each month. Participants can ask questions in a group or privately. Blezy said it’s key that people feel comfortable so they can address difficult questions like whether it’s appropriate to have a sexual relationship with a spouse if they don’t recognize their partner.
“Feeling safe and being able to relate that to someone is really important,” she said. “Caregivers themselves often develop their own significant health issues just because of the stress of caring for someone.”
Sandra D’Arcy, 66, has taken care of her husband since he was diagnosed with one form of dementia in 2004 and then another in 2009.
She says her 77-year-old husband is still active and outgoing, but has lost interest in a lot of his old hobbies and can be unpredictable in his behaviour, causing her to limit, if not eliminate, a lot of their social activities.
“What I find hard is having to explain what he’s doing and what he’s saying — it gets to be a little bit embarrassing sometimes because you never know what’s going to come out of his mouth,” she said from her cottage in New Ross, N.S. “We don’t go out a lot. Friends understand, but they can only understand so much. They’re not living with it everyday.”
D’Arcy said she’s excited about the cafes and plans to attend the Kentville opening in September. She’s hoping to talk to people going through the same thing and also bring her husband, something she didn’t do at regular support groups. “It appeals to me for the simple reason that I can go with him, I can meet with other people who are looking after their loved ones with the disease and get some insight into what they’ve been going through,” she said.
“I think it’s going to be a great thing. I think we’ve needed it.”
McGibbon said the cafes differ slightly from other support groups because they are explicitly informal, include anyone who wants to participate and provide education on the disease.
With the help of experts in the United Kingdom, she is putting together a manual for other Canadian groups interested in starting cafes.
She said a cafe is planned for Toronto and four other groups are trying to get them off the ground in other parts of Nova Scotia and Ontario. There are about 200 in Europe and some springing up in the States.
Blezy says she wished there was such a cafe for her dad and mom, a once busy woman who raised five children, lived on a farm and taught piano, but who is no longer able to speak since her diagnosis in 1999.