Those with Alzheimer's face stigma
Diagnosed with Alzheimer's Disease at just 54 years old, Dennis Serafini went from managing a local grocery store to being unable to look after himself in just a few years.
His wife and caregiver, Debbie, said Dennis used to lead a very social life, interacting with the store's staff, suppliers and customers.
But after he was forced to retire due to his condition, it seemed like all of the people who used to be in his life just dropped out of it, she said.
Debbie said many people are afraid to talk to those with Alzheimer's because they're not sure if they're going to recognize them or what they should say. She encourages people not to think that way.
“You don't have to sit down with them and visit with them for an hour,” she said. “Just say 'Hi, how are you, what have you been up to, how are the kids, how is the wife, nice seeing you.
“Five minutes would make so much difference in his life. He might not remember your name, but remind him of your name, and said 'Nice seeing you Dennis.”
During January, which is Alzheimer awareness month, the Alzheimer Society has launched a national campaign called “See me, not my disease. Let's talk about dementia,” aimed at reducing the stigma associated with the condition.
According to a recent poll of those with Alzheimer's Disease and their caregivers conducted by the Alzheimer Society of Ontario, 40 per cent of respondents said stigma was one of the reasons they didn't access services right away.
“Research demonstrates that people who receive a diagnosis ... may wait up to two to three years before accessing any kind of service or talking about it,” Lorraine LeBlanc, executive director of Alzheimer Society Sudbury-Manitoulin, said.
If a friend told you they have cancer, you'd likely ask them what you can do for them, she said. But your response might be different if that same friend said they have Alzheimer's Disease, LeBlanc said.
“What comes into your mind?” she said. “'Does she understand what I'm saying? That behaviour what is that? That must be the disease. Am I in danger, or what?'”
“We want to break that wall. Through dialogue, we want people to really not be afraid to say what they've got, and to tell people how they can be assisted.
“The easiest way they can communicate is to tell that person 'I can be there, and you let me know how I can be there.'”
The difference in response is because people don't understand the condition, and therefore fear it. She said the only way to break the stigma is to education people about Alzheimer's Disease.
Debbie said her husband was diagnosed after she began to notice a deterioration in things such as his driving skills, ability to speak and participate in recreational activities such as cribbage.
After being on sick leave for a time, Dennis, now 59, went back to work, although on a part-time basis in a role with much less responsibility.
What he didn't do, however, was tell his employers about his Alzheimer's diagnosis. “He was ashamed,” Debbie explains.
But his disease started catching up with him at work as well. After Dennis began performing his job poorly and even doing things like going for walks after lunch and not coming back for several hours, his boss called him in to talk to him.
“He didn't want to tell anybody he had the disease, but he finally told them,” Debbie said. “I got a call, and I explained it all.”
After Dennis was forced to retire, Debbie asked him to begin attending the Alzheimer Society Sudbury-Manitoulin's adult day program, which provides care and recreation to those with the condition.
Although he now loves the program, it took Debbie about a year to convince Dennis to attend the program. When he finally spent a day there, he came home crying, saying the other participants were all so old.
“I said 'Yeah, they are. You're pretty young to have the disease ... But there's nothing wrong with old people. We socialize with our parents. Old people are very nice,'” Debbie said.
Part of the challenge was to break the stereotypes Dennis himself held about elderly people and those with Alzheimer's, she said.
“He's now accepted it and very comfortable with it,” Debbie said. “He's very comfortable with people with that disease. I'm very comfortable with people with that disease, because I have the education.”
While the couple are managing with the help of support services such as the adult day program, there's no denying their life is forever changed.
Debbie, who recently retired at the age of 56, said she and Dennis had planned to go on trips, volunteer and use their snow machine more in their retirement. They also used to spend a lot of time at camp.
“I can't take care of the camp myself, so we ended up selling that,” she said. “So your whole life is changed from what our expectations were five years ago, to what they are today.”
For more about the Let's talk about dementia campaign, visit www.alzheimer.ca.
Alzheimer Awareness Dinner
As part of Alzheimer Awareness Month, Alzheimer Society Sudbury-Manitoulin is hosting its annual awareness dinner starting at 6 p.m. Jan. 22 at the Radisson Hotel.
The guest speaker is geriatrician Dr. Samir Sinhar, the expert lead for Ontario's seniors care strategy, who will be speaking about the impact of Alzheimer's Disease and dementia on the health-care system.
Tickets cost $50 each, or $375 for a table of eight. For more information, contact the society at 705-560-0603.