Alzheimer鈥檚 disease may not always be top-of-mind for many students, but it鈥檚 rare to find someone who hasn鈥檛 been touched by the disease through the diagnosis of a parent, grandparent or other relative.
Every January is marked as Alzheimer鈥檚 Awareness Month, with Alzheimer Societies across Canada engaging people in discussions about the disease.
鈥淲e have a campaign, and its purpose is to increase awareness, increase education, reduce stigma and make people aware of services available,鈥� explains Wenda MacDonald (PhD鈥�89) manager, client services/research liaison with the Alzheimer Society of Nova Scotia.
This year鈥檚 lineup includes a 鈥渇antastic array of public offerings around some books and movies鈥� adds MacDonald. Many of those events are being hosted in partnership with (Faculty of Medicine), an interdisciplinary research team at AV俱乐部 focused on the intersection of health, bioethics and public policy. includes a public lecture and two film screenings with panel discussions featuring community experts, including several Dal faculty.
鈥淭here is still a lot of stigma around the disease鈥� says Linda Bird, director of programs and services with the Alzheimer Society of Nova Scotia. 鈥淪ometimes it even stops people from seeking help,鈥� adds MacDonald. The two are familiar with the consequences of the stigma, hearing from clients about customer service personnel calling persons with dementia 鈥渟tupid鈥� if they forget something, which causes that person to isolate themselves further.
Addressing stigma
Darce Fardy has been fortunate to not experience much of this stigma, likely because of the openness with which he speaks about his Alzheimer鈥檚 disease. As a lifelong journalist who spent 40 years with the CBC, when he was diagnosed he said to himself, 鈥淭his seems to be a good story, I must write about it.鈥� He now writes columns in the Chronicle Herald about his experiences, articles which have gained him a significant following. Fardy says he receives emails from across the country, mostly from families of persons with dementia who find the columns very helpful.
Fardy will be on on January 18 at the QEII Royal Bank Theatre on the main floor of the Halifax Infirmary (1796 Summer St. entrance). As part of a moderated discussion, he will be joined by fellow panelist Dr. Melissa Andrew, an associate professor of geriatric medicine at AV俱乐部 and a member of the Alzheimer Society of Nova Scotia鈥檚 research advisory committee.
The other events include on January 11 with a panel discussion (also at the Royal Bank Theatre), , a renowned medical anthropologist and the Marjorie Bronfman Professor Emerita in Social Studies in Medicine at McGill University, on January 25 at Paul O'Regan Hall (Halifax Central Library, 5440 Spring Garden Rd.).
Fardy says he鈥檇 never heard about Alzheimer's disease in his youth, 鈥渂ut all of our grandparents were what we used to call 'out-of-it' towards the end.鈥�
Dr. Andrew still sees some signs of this approach today: 鈥淪ome cultures tend to normalize dementia,鈥� she explains, 鈥渟aying it鈥檚 just a part of getting old, and others would medicalize it more [and are willing to treat it]. Sometimes we鈥檒l see patients coming in at a very late stage and not that there is a cure but there are things that could have been done to mitigate symptoms, or we could have provided services.鈥�
Challenge and community
The progress made since Fardy was a child has been extraordinarily positive. 鈥淭here are pills to take. But there are also things you can do. Stay active, which I do. And I read a lot, I read two newspapers a day and I鈥檝e always got a book going.鈥�
Bird says one of the major challenges for persons with dementia is 鈥渉aving an understanding community.鈥� She points out that 鈥渢he research shows that if you get families involved early in the disease and they start to think about the future, they make better choices and more informed decisions as they go through the disease.鈥�
鈥淎nd they do have a better quality of life鈥� adds MacDonald. While involving the family helps with the journey there are still challenges in 鈥済etting a cohesive picture of what is happening and what supports there are at all phases along the journey,鈥� she says. The Alzheimer Society of Nova Scotia鈥檚 work with the provincial dementia strategy seeks to fill these gaps and expand services across the province to better service rural areas.
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