By Lincoln DePradine
When The Walnut Foundation (TWF) organized a symposium on Alzheimer’s disease and dementia, they wisely picked Danielle Farrell and Primrose Mharapara as the main presenters. That is because they are both experts in their respective fields, and both have had firsthand experience of having someone close to them who suffered from a dementia-related illness.
“My grandmother, I believe, when she died had dementia,’’ said Zimbabwe-born Mharapara, a nurse practitioner in hemodialysis at the Toronto General Hospital. She made the comment as she addressed the symposium that was organized by TWF as part of Black History Month observance.
Last Saturday’s symposium, at Bramalea Baptist Church in Brampton, was titled “Alzheimer’s, Dementia & Caregiving’’.
“This topic was chosen as a result of feedback from people in past symposiums, where they gave a list on the evaluation forms of things they want us to actually address within the Black community. This was probably at the top of the list,’’ TWF president Ken Noel told The Caribbean Camera.
TWF, a registered non-profit support group, was established in 2007 with the aim of raising awareness “in the Black community about diseases affecting Black men’’, including prostate cancer. The organization has two arms – the “Prostate Cancer Support Group’’ and the “Men’s Health Interest Group’’.
Alzheimer’s is one type of a large group of disorders known as dementia. It’s a progressive, irreversible brain disease characterized by as memory loss, as well as changes in behaviour, mood, judgment and reasoning; and also changes in the ability to communicate and to perform daily living activities. No cure currently exists for Alzheimer’s and an estimated 750,000 Canadians are reported to be afflicted by the disease.
Farrell, public education coordinator with the Alzheimer Society of Peel, revealed that she has had family members who were affected by the disease. She explained that while “age is a risk factor’’ in getting Alzheimer’s, “there are young people living with dementia as well and sometimes it’s missed because they don’t fit the profile’’.
Other risk factors, according to Farrell, include having suffered a head injury, family history and genetics, mild cognitive impairment, Down’s Syndrome, and cardiovascular disease.
“There is no place in the world that dementia does not exist. It’s worldwide,’’ said Farrell, whose expertise includes gerontology.
“Our memory, as we get older, will not remain as sharp as it does when we are younger,’’ said Farrell. “That does not mean we have developed a disease of the brain.’’ The concern, she said, is where there’s “memory loss on a grand scale’’, such as when a person begins forgetting the names of children, sisters, brothers and other family members, whom they should know well. “That indicates a problem; that is not a normal age-related change,’’ Farrell said.
Mharapara said due to lack of resources and knowledge, her Zimbabwean grandmother was never taken to visit a doctor for the dementia with which she appeared to suffer. “It’s something that I continue to see every day and I know it’s something that does impact my family back home in Africa,’’ she said.
As part of recommendations on taking charge of one’s “brain health’’, several suggestions were made, including learning new things, practicing memorization and engaging in doing puzzles, riddles and other “strategy games’’.
People who serve as caregivers for dementia patients were also advised to try and make use of provincial and community resources such as in-home bathing support, occupational and physiotherapy, adult day programs, and applying for disability tax credits.
Lana Salmon, who was one of a panel of three sharing their experiences of having been caregivers, said people should also examine their workplace health benefit plans “and know how these things work’’.
However, caregivers themselves were cautioned that they, too, must pay attention to their health by taking breaks from their patient responsibilities; getting enough rest at nighttime; avoiding the abuse of alcohol; and by joining a social group. “Caregivers have to be able to recharge their batteries,’’ said Farrell. Mharapara added that “caregiving can drain you out. So, take of yourself, so you can take care of your loved ones’’.
The symposium “exceeded expectations’’, said TWF president Noel. “Just look at the number of people who showed up and pretty well everyone stayed right to the end, even though we went over a few minutes,’’ he said. “I’m very satisfied with the outcome, with the questions that were asked and the dialogue that was engaged in among people.’’