For Dennis Goddard, it started, about two years ago, when he became confused over directions while he and his wife, Clara, were driving to a wedding. Not long after, he couldn’t find his belt. He scoured his condo, enlisted his wife’s help, only to finally discover he was already wearing it.
It soon became obvious that it wasn’t just forgetfulness. And, a year ago, after his family doctor referred him to a specialist, he was officially diagnosed with dementia. Learning he had Alzheimer’s Disease was not particularly surprising, he says.
“I wasn’t upset and wasn’t really surprised because I had been forgetting things,” said Dennis, 84. “I know a lot of people won’t admit it. I’m not embarrassed by it. If I’m out somewhere, I’ll just say ‘You’ll have to excuse me because I have dementia.’ I tell them that and then they understand where I’m coming from.”
That healthy attitude is what the Alzheimer Society of Simcoe County is looking to foster in the community. To coincide with Alzheimer’s Awareness Month in January, the local organization released results of a survey that revealed awareness about dementia has increased, but the stigma and negative attitudes around it continue to persist.
The on-line survey, which questioned 1,500 Canadians between the ages of 18 and 65, discovered that 46% of respondents would feel ashamed or embarrassed if they had dementia, while 61% of those surveyed said they believed they would face discrimination of some kind. The survey also found that one in four Canadians believe their friends and family would avoid them if they were diagnosed with dementia, and only five per cent of Canadians would learn more about dementia if a family member, friend or co-worker were diagnosed.
That’s why the Alzheimer Society has launched a new social awareness campaign whose message is simple: ‘I live with dementia. Let me help you understand.’ It’s meant to spark conversations and encourage people to see dementia in a new light.
“These results validate our thinking, that stigma is one of the biggest barriers for people with dementia to live fully with dignity and respect,” says Debbie Islam, CEO at the Alzheimer Society of Simcoe County. “The findings underscore the work we must still do to end stigma once and for all. There is no shame in having dementia. We can’t let negative perceptions stand in the way of people with dementia seeking help and support. Life without discrimination is a right for anyone affected by this disease.”
Dennis and Clara Goddard embody the message. The active couple, who have been married for 46 years, accepted the diagnosis, refused to let it change their lifestyle and made a conscious decision to have a positive attitude. Not only are they unafraid of being forthright about the diagnosis, they offer help to those who are struggling with it.
“We go to the monthly meetings (of the Alzheimer Society) and we love it,” said Dennis of the sessions held in the ground floor of the Leacock Care Centre where the seniors’ care clinic is housed. “They put people with dementia in one room and the caregivers in another. We do activities and I like it because there are others like myself and I can help.”
If you weren’t aware of it, you would not know Dennis has dementia. He can vividly recall details from his 19 years working the line at GM in Oshawa or his 17 years selling cars in Orillia; he happily recounts stories of landing jobs, of being named the top salesman at Orillia Chrysler and the retirement party they threw for him. He is gregarious; he loves to connect with the world through social media on his smartphone and, after falling in love with the internet a few years ago, searched his roots online.
“It took me a while, but I’m on Facebook, Instagram and we Skype with our children and grandchildren,” he says. “But I’m getting a little scared about the computer because I’m getting slow in remembering the passwords. My short-term memory is terrible. This morning, I was about to take out the garbage and I lost my train of thought. If I wait two seconds, it’s completely gone. It’s frustrating.”
Because of that frustration, he began feeling anxious at times. So, his doctor prescribed him some medicine that has helped; he regularly sees a specialist who closely monitors his progress. And while he is doing well, plans to stay in his home and vows to remain active, he does worry about the future.
“Once in a while, it comes to me when I see others and I’m not looking forward to if you get to the point where you don’t recognize your own wife,” he says. “I feel badly for people who are going through that and I think about that, but then I put it out of my mind. I’m going to enjoy my time and focus on that.”
Clara said they believe in the power of positive thinking and having a good attitude. “You could be crying everyday if you wanted to, but you can’t spend your life feeling sorry for yourself,” she said. “We stay active, we have a sense of humour … having a positive attitude is so important.”
With a mischievous grin, Dennis glances at his wife and asks if she remembers what he said the other day. “I said ‘If you see me go out the door without my pants, for God’s sake, grab me,’” he says with a laugh. “I don’t want to scare the old girls in the building.”
They also recognize dementia is serious. Their advice is to tackle it head-on. “Don’t ignore it,” says Clara. “Look into it. Accept it and do positive things.” Dennis agrees: “Get an appointment with your doctor. Don’t sit at home and think about it, worrying.”
They also advise people to take advantage of the programs offered by the local Alzheimer Society. That includes monthly social luncheons, care partner/family support meetings, support groups for people with dementia and their care providers as well as a range of programs.
“We have a number of educational programs – everything from single sessions to eight-week programs,” said Susan Nagy, family support coordinator for the Alzheimer Society of Simcoe County. “We provide education opportunities to address the different stages of progression.”
Nagy said that about 8,800 people over the age of 65 are living with dementia in Simcoe County. That number doesn’t reflect those under 65 and those who have not obtained a diagnosis. “We’ve made strides but there is still a large stigma,” she said. “When some people think about Alzheimer’s, they’re thinking about being incapacitated, but the reality is you can still be very productive.”
She said, for many, the diagnosis is a relief. “It helps to know what you’re dealing with. It helps to have a place to talk about things, where someone understands your frustrations, where you can have questions answered and help to move forward,” Nagy said. “It’s important to realize you’re not alone.”
For more information, visit www.alzheimer.ca/en/simcoecounty
