People with Dementia are Speaking Out and Why Not?

People with dementia are speaking out and why not? Many people with dementia have this rich reservoir of experiences to share with others. I would encourage others like me to get out there and become a face of dementia that members of the public don’t get to see very often. In this video, people with Dementia and Alzheimer’s are telling memories they don’t ever want to forget:

Right now, while I can, it is my responsibility to make the most of my life. It is a blessing for me to feel part of an Alzheimer team that educates the public and reminds them that there are real people with dynamic personalities behind this illness.

My early stage support group wanted to educate the public so we put an invitation in the newspaper inviting them to a panel discussion by people with the disease. What a hit! We shone that day and the public saw a whole new face of Alzheimer’s disease. Each panel member shared from their heart. What an eye-opener! People were amazed that we all appeared articulate and moreover intelligent. We were seen as competent people anxious to share things that mattered to us.

Leslie Barrans, my father, had a habit of leaving his care facility often, without that he got noticed. My dad is now 90 and he’s no longer able to get around, but he used to be very determined to go off on his own. I often got the call at work telling me that Dad had gone missing. It was very upsetting. Alzheimer’s is really a family affair! At that time I was an operating room nurse, so not only was I worried about him but there was the added stress of getting called out of the O.R. for family emergencies.

On one occasion my father was found asleep on the railroad tracks. Another time he was sitting in the park in the pouring rain. Thankfully, on both of these occasions, he was found by someone passing by. My father is registered with Safely Home™ and the people who found him followed the instructions on his [Safely Home] bracelet and called the police who then made sure he got home. This program gives an extra measure of assurance that someone you care about can be found returned quickly and safely. Only that alone will give you at least some sort of peace of mind.

On May 1st my friend Kris Kendall and I began cycling across Canada to promote Alzheimer Awareness. We believe that it’s important that younger people speak out about Alzheimer’s disease. Often we see it as an old people’s problem but, in fact, Alzheimer’s is a real family disease. Part of our message will be to tell people how this disease affects all generations. Everyone connected to the person with the disease is affected in some way.

I lost both my grandmother and grandfather to this disease and I wonder if it’s inherited. It was very difficult to watch them slip away. When they died I was comforted by my belief that their spirits had been set free from the chains of their body and mind. My grandparents have inspired me to help fund Alzheimer research in hopes of one day finding a cure.

Before we left Regina we raised $5,000 to support a summer student scholarship at the University of Saskatchewan Neuropsychiatry Research Unit. This money will support a promising science student while contributing to Dr. Peter Yu’s important research into Alzheimer’s disease.

As the baby boom generation ages, the cost of this debilitating disease will be immeasurable. That’s why the search for a cause, a cure and better treatments for Alzheimer’s disease is so important. To read more about how to best recognize early symptoms, read the post “Could It Be Alzheimer’s Disease?”