Throughout the many years I have been studying and observing dementia, I have found that there is a unique stubbornness that comes along with this disease. Some seem to see it as defiance but I beg to differ.
Over the many decades that I have been caregiver to my family members who have dementia related diseases, I have also been educating the general public on cognitive disorders and best standards of care. You can imagine I have met many, many people trying to make the most of life after a diagnosis of dementia. Are these folks stubborn? You better believe it! They refuse to give in to the stigmas that come with these diseases! Good for them!
For the past half a century or better we’ve been told to believe that once you’ve been diagnosed with, for instance, Alzheimer’s disease, you were done. You’ll be left sitting in a wheelchair, rubbernecked, gazing out a window drooling, not even knowing who you are anymore. This is so far from the truth. There can be a high quality of life from the time of being diagnosed and the end stage of the disease. I believe the trick to this is getting on the right track as early as possible.
A program that I have been heavily involved in on a daily basis for the past six years is an organization called “Dementia Mentors.” This is an international group only for those living with dementia. I have truly been blessed by the opportunity of being friended and educated by the most amazing people I have ever met. There’s not a university on this planet that could have taught me what these people have. It has truly made me the top educator that I am. To learn more about this organization, please go to: DementiaMentors.org These folks are all living with dementia related diseases such as Lewy Body Dementia, Frontemporal Degeneration, Vascular dementia, Alzheimer’s disease and traumatic brain injury and others. But those afflicted have not, thrown in the towel. No! Instead, they have grabbed life by the horns and stared it down. I couldn’t be any prouder of every single one of them. Do they have bad moments? Yes. Do they have horrible days? Of course they do, but what they have learned to do best is adapt and teach and support one another.
Some are even still cooking; in fact, some are baking daily as a type of therapy. They have learned to use timers for everything. Some rely on Alexa. “Alexa, please set a timer for 35 minutes. Alexa, please remind me of my daily pill times.” Living with dementia today compared to 20 years ago, is like being in two different worlds. There is helpful technology everywhere. In truth the need is for it to be used for training early on.
When I started caring for my dad, Facebook didn’t even exist. Now there are online support groups everywhere, some for caregivers and yes, some for those living with dementia.
I personally know dozens of folks living with dementia that are writing their own blogs and even speaking at conferences about what they are experiencing. In my estimation, this is one of the best ways to finally breakdown those harmful stigmas. Let’s learn from these people, for they are truly the experts. They know the symptoms better than anybody. After all, they’re living with them every day. Let them become our mentors.
Gary Joseph LeBlanc CDCS
Director of Education
Dementia Spotlight Foundation