Three Torontonians Share their Family’s Experiences with Alzheimer’s Disease

The Alzheimer Society of Toronto’s Young Leaders Council Memory Ball took place this last weekend in Toronto. The committee who puts on the ball is dedicated to educating young Canadians about dementia. This cause is very personal to many of the members on the committee who also act as caregivers to their own family members suffering from Alzheimer’s or dementia.

Memory Ball - Alzheimer's Disease

This was the 6th annual fundraising event which was hosted by SportsNet’s Caroline Cameron. The gala brought together young urban professionals, community leaders and local philanthropists to raise money for the Alzheimer Society of Toronto. The team has already raised $310,000 over the past five years.

I got to chat with a few of the folks involved about their experiences with the disease and how they cope.

Name: Kat Andrikopoulos
Occupation: Digital Marketer in the clothing/apparel industry
Role with YLC: Co-founder, Director of Marketing – I lead our team in getting the word out about Alzheimer’s disease and how it affects young adults. Our small but mighty team spans two timezones and we work with bloggers, influencers, our wonderful pro-bono PR team at Craft PR to make sure people are talking about the event and Alzheimer’s disease. We write blog posts on brain health and what to expect at Memory Ball, post on social media all year-round and send emails to our committed base to build awareness and raise funds.

What was your first personal experience with Alzheimer’s?

When I was 18 I came back from being away at school to my summer job to work with Jane Holland-Poirier (Carolyn’s mom) at her PR firm as an intern. After having known and worked with Jane for several years, I noticed she was exhibiting some strange behaviours… her habits had changed – a sensible woman, she began spending money on things she had previously deemed frivolous expenses, she was typically an industrial early riser, and started coming to work later and later, I found myself unlocking the door in the morning. Her driving was impacted, and she struggled with regular tasks she was a pro at. I had no idea what was wrong with her but I remember being very scared. Everyone around me told me she was fine. Even her doctors had said she was ‘just experiencing menopause.’

How did it first present itself?

I most prominently recall Jane not remembering that she had switched the language settings on her computer so she could write a press release in French. She called me and my coworkers into her office several times to help her through it. She would say her computer was typing in a strange language (she was fluent in French). This was very bizarre, as Jane was one of the most tech-savvy ‘adults’ I knew at the time and had been using computers proficiently throughout her whole career and the time I had known her. As someone with a keen attention to detail, she would ask several times if something was done, when she had witnessed it being done a few hours earlier. At one point, our colleague, Sarah, did an online quiz to see if someone has dementia, and Jane scored a 7/10 based on those questions. Before that, I couldn’t fathom that what she was going through was Alzheimer’s.

What perceptions changed for you about the disease after knowing it more personally?

First of all, that Alzheimer’s can and does affect young people. People as young as thirty can be affected with this disease, sometimes even younger. In addition, there are hundreds of thousands of young caregivers in this country and the system isn’t built to support them. At a young age, friends may not understand what their peers are going through when caring for a parent. At 18, I barely even thought about Alzheimer’s before seeing Jane and her family go through it. I didn’t realize that someone’s personality could change and they could forget their nearest and dearest loved ones, including their children.

Advice for others who have loved ones affected by Alzheimer’s?

Reach out to your local Alzheimer Society, they have wonderful support groups and resources to help you. Look up similar groups in your community and internationally on social media for support. Participate in charity events like walks and other fundraisers where you can meet people going through a similar situation. The Alzheimer’s advocacy movement has gained momentum in recent years and you are not alone. Check out groups like Hilarity for Charity and Dementia Friends. I personally like to look up hashtags on Instagram like #endAlz, #wipeoutAlz or #dementiaawareness to see what the Alzheimer community is doing around the world.

If you know someone who is a caregiver to someone with Alzheimer’s, do not ask if you can help them, but proactively do things to help – offer to stay with the person with dementia so the caregiver can do basic tasks like take a shower, cook or run errands without worry. Make sure you support the caregivers in your life so they may engage in self-care and personal time. This can be especially difficult if they are a sole caregiver but they need to take care of themselves, too. If the caregiver is not well, they can’t take care of the person or people they’re supposed to help.

From your personal experience, how can society better help those with Alzheimer’s and their families?

Get educated on Alzheimer’s disease and different forms of dementia. Take the time to learn that this disease has a much more profound effect on many people. Help to fund brain research – we still know very little about this powerful organ that still contains so many mysteries. Tell your MP that you care about Alzheimer’s and that you expect that we should have a robust National Dementia Strategy in Canada.

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Name: Carolyn Poirier
Occupation: Financial Services – Marketing/Business Development/Events
Involvement with YLC/Alzheimer Society: I’ve been involved with the Society since 2011, when Katherine Andrikopoulos, Megan Shaw, Lauren Hopkinson, Cristina Costa, Kathryn Fudurich and I founded Memory Ball. To date, we’ve raised over $310,000 to support programming and research for the society. At present, I am a founding member of YLC, and am responsible for the day-to-day of Memory Ball.

What was your first personal experience with Alzheimer’s?

My grandfather passed away from complications related to Alzheimer’s in 2005, his was my first real experience with the disease, but from my (limited) knowledge at the time, it seemed normal he was in his late 70s and maintained a happy demeanour throughout the disease. When my mother was diagnosed three years later (2008), I was 19, my sister was 14, and that definitely did not seem normal. Her diagnosis in 2008 was life altering.

How did it first present itself?

For my mother, it was small things, she was a perfectionist but started having problems spelling. One of the more nerve-racking examples was when she was picking up a group of university friends from the bus station, and began driving on the wrong side of the road. She blamed it on being British, having grown up there, but she had driven in Canada for 20+ years – it was telling. Many other changes to her generally bubbly personality occurred before and after the diagnosis, my mother, in the way she’d like to be remembered left in part a year or two before the official diagnosis.

What perceptions changed for you about the disease after knowing it more personally?

It is not a normal part of ageing. I cannot stress this enough. The day-to-day of this disease is a challenge for all those involved, at all stages. It is terribly difficult to manage. The further into the disease you are the more time is required to care for the individual. When you think about it, your brain controls everything – when you lose cognitive abilities and memory, you become dependent on caregivers to live. I believe that scares people the most, it is not just forgetting keys or names, it is being unable to feed yourself, go to the bathroom or feel safe with your loved ones… you ultimately and slowly lose everything.

How do you cope/manage? Advice for others who have loved ones affected by Alzheimer’s?

Find a support system, whether it is friends, family or something more formal like the ones put on by the society – you need to talk to people about this. Sharing your experiences with people going through the same thing can make you laugh, cry and ultimately stronger. Giving back has also been a major key to my “management” of this disease. When confronted with a terminal and degenerative diagnosis, people can feel helpless. In supporting and fundraising for the Society I have been able to do something for future families, even knowing there wasn’t much I could do for my own mother. Hopefully, somewhere down the line, someone will hear a story like this, donate a dollar to research (or their time) and we’ll find a cure or better support families.

From your personal experience, how can society better help those with Alzheimer’s and their families?

Keep on doing what they are doing! In general, elder care and support for those with a terminal illness is something that as a country we can do better. The wait-list for long-term care facilities is lengthy, and the costs of diseases like Alzheimer’s are detrimental to most families. As the population ages, these concerns are going to grow tremendously, as such, finding a cure is vital. There needs to be more support for caregivers in the workforce, and greater resources for those facing this kind of disease.

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Name: Caroline Cameron
Occupation: Sports Broadcasting at Sportsnet
Involvement with YLC/Alzheimer Society: 2017 Memory Ball Emcee

What was your first personal experience with Alzheimer’s?

My Grandma Shirley was diagnosed with Vascular Dementia a few years ago.

How did it first present itself?

It came on slowly. Looking back, there were early warning signs: forgetting what year it was, sudden confusion etc. It built up gradually and still continues to.

What perceptions changed for you about the disease after knowing it more personally?

It effects everyone differently as it progresses. Emotionally, it’s difficult to continually adjust to the new reality that the disease presents. It’s always evolving.

How do you cope/manage?

Advice for others who have loved ones affected by Alzheimer’s? My family is very close so we help support each other. It’s really important to have people to talk to about it. As for supporting my Grandma, what helps is that I’ve always been close to her. I always remind myself ‘what would she want us to do’. That helps me process the changes.

From your personal experience, how can society better help those with Alzheimer’s and their families?

It’s all about support: support for those directly affected by the disease but also support for the supporter.

 

Learn more about the organization and memory ball from their website.

 

 

Joel Levy
About Joel Levy 887 Articles
Editor-In-Chief at Toronto Guardian. Photographer and Writer for Toronto Guardian and Joel Levy Photography