January is Alzheimer’s Awareness Month, although I don’t think we should ever wait for a specific month to draw awareness to something as important as Alzheimer’s disease and other dementias. I never tire of talking about dementia and I hope others don’t tire of talking about it, reading or hearing about it, because we need to continue talking about it. The more we talk about it, the more we reduce stigma and break down stereotypes. Stigma is a major barrier to living with respect and dignity. Many people living with dementia feel lonely and isolated because they fear judgement from others.
I just finished recording a six-part podcast series entitled Forget me not about dementia and I’m very excited about it. I had the opportunity to interview some wonderful people who shared their experiences as persons living with dementia, caregivers and experts because the people who know the most about dementia are those experiencing it. I encourage everyone to listen to the podcast here.
Nobody can better explain what a person living with dementia wants than a person living with dementia. In fact, the Alzheimer Society Canada 2020 campaign is: “Yes I live with dementia. Let me help you understand.” This campaign allows persons living with dementia to share their stories in their own words. I encourage everybody to visit their website and read these wonderful stories.
There, you’ll meet Mary Beth, who I had the privilege of interviewing in one of my podcasts. I first met Mary Beth on a committee almost two years ago and was immediately struck by her candour about living with dementia. She is an excellent ambassador and is passionate about changing people’s opinions. She is also a brilliant spokesperson.
In speaking with people who really want to make a difference, I try to dispel some of the myths associated with dementia; myths like a diagnosis of dementia means that life is over, or that only older people get dementia or that people with dementia don’t understand what is going on around them. These myths create stigmas that have very negative impacts of the quality of life of people living with dementia.
Stigma is perpetuated by lack of understanding, so let’s help one another to understand. Let’s listen to those living with dementia. Let them tell us what they are experiencing and what they want. Let’s start looking at the person who has the disease, rather than the disease the person has. It is time to begin focusing on what a person can do, not what they can’t do.
We have the power to help persons living with dementia live. We have the power to help persons living with dementia experience enjoyment and freedom to do the things they want to do without fear of stigma. We have the power to change people’s minds. Let’s talk about dementia. Not just in January, but all year.