“None of us expected Mom’s symptoms to be dementia – she was only 46”
“At my wedding, there is a tradition that the bride drinks from a special cup during the ceremony. I was shocked and confused when my mother drank from it instead of me. The Rabi refilled it, but it was the kind of memory I understand much clearer now,” remembers Alison.
Her mother was showing the first signs of what would later be diagnosed as Alzheimer’s disease, but Alison and her family were unable to spot the warnings.
“Thinking back to my wedding, it was noisy and full of people. My mother kept stepping on my dress, and became very agitated. A few days before, she threw food against a wall in a restaurant. At the time, none of us knew why she was behaving like that. Now we recognize that my mom was in the early stages of Alzheimer’s disease.”
Alison’s mother was only in her 40s when the first symptoms started to present themselves. Young onset dementia impacts 16,000 Canadians under the age of 65, and yet, the general awareness amongst Canadians is quite low.
“My sister and I were just teenagers when our mom's mood changes started. Never once did we think that it could be Alzheimer’s.”
“I wish I had known 15 years ago what I know now,” explains Alison. Without context, her mother’s behaviours drove a wedge between them. “I didn’t speak to her for 10 years. If I knew then, what I know now, I wouldn’t have held a grudge. I would have made sure to talk to her, because when her ability to talk was gone, I didn’t know how to communicate with her.”
Teenagers and children must be able to access adequate support in order to help them better understand the disease and the changes that lie ahead. Alison is heartened to see the number of programs aimed at teens and children available in her region.
“I follow the Alzheimer Society’s different pages on Facebook and see that they run events for kids and teens. That’s so helpful. I hope that awareness of those resources grows.”
The most important first step in terms of living well with young onset dementia is to get a diagnosis. Interventions and support are still the best ways to mitigate the impact of the disease on those experiencing it and their loved ones.
However, getting a diagnosis can still be difficult, especially in the case of young onset dementia. Alison’s mother was 55 when she received a diagnosis, almost 10 years after the first symptoms began to present themselves.
“It was a real battle at first because before she saw the neurologist, years before her symptoms were obvious, doctors said she had anxiety and other issues, due to her young age.”
The memories of watching her mother fade away due to the disease remain painful for Alison.
“Before Alzheimer's took my mom's life, it subtly took away bits and pieces of her, not just her memory. It took away her sense of humor, it made her irritable and moody, it made her do and say things she never would have done.”
When Alison’s mother passed away in 2016, the pain and grief became unavoidable.
“I went to a bereavement group at the Alzheimer Society. I was going through a really horrible time after my mother died. I knew right away that I would need support. I was there when she passed, and I needed to find others who had been through a similar experience,” she explains.
“My local Alzheimer Society was actually having a bereavement group soon after I got home, so the timing was perfect. The facilitator taught us the process of grieving. Each week had a different theme, and it helped so much to be able to talk openly with others who have also experienced what I had experienced.”
Above all, Alison hopes that her story helps others to learn more about the warning signs of the disease, and that the general awareness amongst Canadians grows. For her, a dementia friendly community is all about dignity.
“An ideal world for people living with dementia is one that promotes dignity and respect, even when they can’t speak for themselves. They’re still an adult, and even something like baby talk can hit them in a moment of lucidity. Even in advanced stages, there’s no telling what someone understands, and how it might impact them.”