Dementia: The Invisible Diagnosis

“Dementia is not a physical disease, but a cognitive one.” These are the clear words of Jim Mann, living with dementia and desperately trying to shatter the stereotypes that surround it. The face of dementia is quite varied. You can’t always tell if the person in front of you, behind you, or beside you might be experiencing it. And here’s the real kicker: it doesn’t just happen with old age. It’s becoming more commonplace to hear about dementia touching someone right in our own communities. The question is: what is your initial response to that? If it’s immediately fear and uncertainty, this story is for you. Listen to the full episode above or check out the action steps below.

After being formally diagnosed with Alzheimer’s in his retirement years, Jim has become a well-respected partner on multiple research projects and has both authored and co-authored many academic papers related to dementia research and practice and validating the voices of people with dementia. He finished two separate six-year terms on the board of both the Alzheimer Society of Canada and the Alzheimer Society of British Columbia and remains active on the advisory and leadership councils for both organizations. With a personal history caring for a mother with dementia and now living with it himself, Jim spends his time “advocating to educate.” The main point he keeps routing back to is this: if we really want to help someone living with dementia, we have to understand that having a good quality of life is quite possible.

We’ve summarized some of the main points of this interview into your Action Steps for today:

  1. Jim talked about how there is a stigma surrounding dementia no matter where you are at on the journey, be that early in the diagnosis or later. It’s important that we continue to acknowledge that dementia is not a diagnosis of “the old and decrepit.”  You can present very well living with dementia and appear perfectly “normal” – yet still need the assistance of those around you. So we need to get the stereotype out of our minds that dementia “looks” a certain way.
  2. Next, he also mentioned how negative stereotypes are exactly what inhibits progress in the area of person-centred care, and that it was extremely important for persons living with dementia to share their voice.  To stay active and keep talking to people, not retract out of embarrassment or fear of feeling “uncomfortable”. It is the voices of lived experience that make the largest impact on the community and relationships with others within the community
  3. That leads me to the point that we, within the community, need to look for ways to join and assist PLWD in sharing their voice. So they can educate on what they’re living with and how they’re living well – or better – with dementia. The only way to reduce stigma is to help people get more comfortable with dementia and that happens by learning more about it. 
  4. For researchers in this space of Alzheimer’s and dementia, I hope you heard that quality of life research is what’s so important. By partnering PLWD also with those who aren’t (particularly of all ages); this learning that happens directly from each other has a very large impact on the quality of life experienced by all parties. 
  5. His last point I found quite empowering: that we all have a role to play, including those living with dementia. Hearing the stories of others can offer more confidence and encourage a sense of purpose. Life goes on and you can be a part of that. A little bit of encouragement goes a long way toward building the confidence of someone else just diagnosed.

Here’s Jim’s CALL TO ACTION: Get the diagnosis and LIVE. Find your purpose. Find a reason to get out of bed in the morning.  Don’t away from life with this diagnosis, but to step out and live. 

– Jim Mann, dementia educator and advocate

Join us next time on Life With Dementia, the solution-driven podcast sharing relevant research, personal stories, and practical tips for living well with dementia. 

Tune in through Spotify, Stitcher, or Apple Podcasts, or stream live on our website.

If you like what you read (or heard) share your comments with us on social media via Twitter or Facebook and please share with others to help us continue to grow. Together, we can all become dementia advocates and create a more inclusive, dementia-friendly world.

Show Notes:

Life with Dementia podcast is a proud member of The Alberta Podcast Network, powered by ATB.

Want to know more about Jim Mann? Follow him on Twitter or LinkedIn.

Featured image by Darius Bashar on Unsplash

Podcast episode music by Blue Dot Sessions “OneEightFour”