Feature Friday has always been a way to share the stories of people who are doing incredible things in Calgary. In the 13 months I have been creating these features, I have not featured a more deserving and worthy cause. Today, I am humbled to share the story of the Alzheimer’s Society of Calgary. I sat down with two women who have been affected by this disease in some form, and you can read their stories below. I hope this feature is more than a feature; I hope it is a call to learn more, understand what more than 12,000 Calgarians live with every day and to support them with compassion and care.
Dementia is not a not normal part of aging. It is a progressive, degenerative disease that destroys vital brain cells. More than 12,000 Calgarians are living with dementia, and every day approximately eight more Calgarians will develop Alzheimer’s disease or a related form of dementia. In Canada, over 564,000 people are living with this disease, and this is expected to double by 2031. More than 65% of these will be women.
There is no known cause or cure, and it can affect anyone. The Alzheimer’s Society of Calgary supports those affected with Alzheimer’s disease and their families.
I sat down with two women who have been affected by Alzheimer’s disease. Here are their stories.
Janet: affected by Alzheimer’s by two generations
Can you share a little bit about your experience with Alzheimer’s disease?
My grandfather and grandmother were diagnosed with Alzheimer’s in the 1970’s. Both my mom and dad were diagnosed with Alzheimer’s in the early and mid-2000’s. For my mom seeing her family members living with dementia was traumatizing.
Dementia develops insidiously, and people – especially spouses – think it’s their fault. So they don’t reach out or ask for help. Sometimes friends and family abandon because they don’t know how to deal with it. Finding a support group was helpful because you get the opportunity to talk with other people, and take their advice, lean on their support and know that you, as a family member, don’t have to go through this alone.
I think one of the biggest things I learned going through this many times is that it’s not about right; it’s about being kind. I remember driving my dad home one evening and he told me that he wanted to marry this woman. This woman was my mother. I said, “Dad, you’re already married to her, and I’m your daughter.” He became very quiet and withdrawn after that. I have learned that you need to be with that person in that moment however they are experiencing it. I had to remember that it wasn’t my dad who was acting this way, it was the disease.
In your experience, what common misconceptions do people hold about Alzheimer’s disease?
I think there is still a misconception out there that you can’t talk about it, that people with dementia are often violent and it’s not safe to be around them. There’s also a cloud of shame that follows this disease. What I have learned is that if you don’t talk about it, things are not going to get better. Talking about it will help you get the help you need.
How does an organization like Alzheimer’s Society of Calgary help support those living with dementia?
They have a great workshop where they teach the Best Friends Approach. It’s all about how to be with that person as they are in that moment. It’s not about correcting them, but it’s just about being with them.
The Society has been invaluable to me providing support. The support groups are wonderful – you can connect with other people going through the same thing, get some advice, learn how to not only care for the person living with dementia but also yourself and know that it’s okay to laugh, cry and have fun.
The Society also does wonderful events like this weekend’s Walk + Run. And I think they are very progressive as they are launching a Dementia Network.
No one should go through dementia alone, and the Alzheimer’s Society of Calgary provides that support.
Allyson Kenny: Alzheimer’s Society of Calgary Program Coordinator and currently living with Alzheimer’s
Can you speak a little bit to your experience with Alzheimer’s disease?
Both my grandmother and my uncle lived with dementia. My grandmother had a stereotypical case of dementia, and my uncle had vascular dementia, which is damage to the brains caused by a stroke or other vascular event.
What are some common misconceptions you believe people hold about dementia?
One of the biggest misconceptions of dementia is that it just affects memory. Dementia can affect more than memory – it can affect depth perception, emotions, personality and more.
Many people often think that dementia is like a death sentence, that life is over. However, we know that people living with dementia can live full, healthy lives.
There’s also significant fear surrounding this disease. Often, people don’t know to be around those with dementia. There are questions like, “What do I talk about with them?” or “Will they recognize me?”.
It’s important to know that dementia affects more than memory, people with dementia can live life well and reaching out to support the person and their families can be invaluable.
Tell me about the Alzheimer’s Society of Calgary.
The Alzheimer’s Society of Calgary started 35 years ago by Jeanne Bentley. Dementia was a growing issue, but there was little support for those living with dementia and their families. Jeanne gathered 8-10 of her friends to form what is now the Alzheimer’s Society of Calgary.
We are a person-centered organization – we focus on the person with dementia first, but we also offer programming to support caregivers, family and the community.
Our tagline is “where community, empowerment and insight begin.” Rallying the community through our Walk & Run, creating support groups and giving people the power to educate themselves on the disease is important to reducing the stigma around dementia and continuing to support those living with this disease.
You are launching a dementia network in Calgary. Can you tell me a little bit more about this?
No one organization can tackle dementia alone. The Dementia Network is a collective of organizations working in concert to provide a holistic, coherent system of support for those living with dementia and their families.
We have two main initiatives going on right now. We host a community gathering where people can bring their thoughts, ideas and questions about dementia to this space. We are launching the Conversation café on October 11, where we will gather at the new restaurant at the Kensington Legion. We are launching this to create an open space to gather as a community, to socialize, have a meal and simply be together as a community.
How can people get involved with the Society?
Join us on October 8 for the Thanksgiving Walk & Run. Online registrations close on October 7 at 2:30 pm, but people can still register on the day of the event.
People can also volunteer with the society. They can get more information about our volunteer opportunities on the website.
Lastly, people can educate themselves about the issues surrounding dementia. Education is a great step toward reducing that fear surrounding this disease.
Is there anything else you would like to add?
I think it’s important for people to know that we are all about empowering communities and having a local impact. Any donations made to the Society 100% stay local.
About the Investors Group Alzheimer Walk & Run
The 27th Annual Investors Group Alzheimer Walk & Run takes place this Sunday, October 8 at Eau Claire Market. The Walk & Run includes a 5km walk, 5km run and 10km run. This event is for everyone, whether you are 2 years old or 92 years old. The funds raised from this event will go to support a growing number of families impacted by this disease. Learn more about the walk here: www.alzheimerwalkrun.ca
You can learn more about the Alzheimer’s Society of Calgary and get involved by visiting their website, or following them on social media.
Facebook: Alzheimer Society of Calgary
LinkedIn: Alzheimer Society of Calgary
YouTube: Alzheimer Society of Calgary
Do you know of a person, business, non-profit or other organization doing amazing work in Calgary? Tell me about it! Visit the Feature Friday page for more information!