Let’s talk about dementia, because honestly, not enough people do. Despite the fact that our society is becoming more and more open about other medical conditions every single day, we still have a tendency to sweep the subject of dementia under the rug- especially when it comes to the people closest to us. Dementia Friends Canada wants to change that.
Today, we’re not going to sweep it under the rug. In fact, after today, we’re never going to ignore it again. We’re going to stop believing the myths, stop stigmatizing it. Instead, we are going to learn to help those around us cope better. We are going to become proud Dementia Friends.
Become a Dementia Friend and End the Stigma
Dementia Friends Canada wants to put an end to that stigma and help dispel all the myths once and for all. By becoming a Dementia Friend, you will learn about the signs and symptoms, as well as the simple things you can do to help your loved ones communicate and live better. You’ll discover great tips like how to speak slowly and calmly, keep your sentences short and ask yes or no questions, as well as tips on how to communicate non-verbally.
You’ll also learn ways to make your time with your loved one more comfortable for both of you. For example, did you know that when you are visiting with a loved one with dementia, it’s important to approach from the front, maintain eye contact and go with the flow? Some of these things I learned during my time and experiences with people with dementia.
Dispelling the Myths & Learning the Facts About Dementia
I want to share a couple of stories with you about my experiences with dementia. They are three very different stories, but all have a common element. I think you will see it emerge. These stories also help illustrate what happens when we let the myths of dementia overwhelm the reality.
Myths: Dementia is hereditary & preventable
When I was a teenager, my great-grandmother began showing signs of dementia. I can’t tell you exactly what those signs were because I was so young. I just remember that, one day, she went to live in a nursing home and I never really saw her again. My grandfather visited her often, but the rest of the family did not. Around the same time, my grandfather became very worried that he would develop dementia. He believed the myth that it was hereditary. He also believed it was preventable, so he started memorizing new words and quotes every day to keep his mind sharp.
Fact: While genetics can play a role in dementia, it isn’t a very strong link. Some people have multiple family members with dementia and never develop it. Others have no family history and do. Also, dementia related to Alzheimer’s disease (which my great-grandmother had) is not preventable. Dementia related to damage to the brain from strokes and heart disease, on the other hand, are.
Myth: People with dementia don’t understand what is going on around them
About 7 years ago, I was a nursing student just starting my clinical rotations at a long-term care nursing facility. On my first day there, I met two women with dementia. They used to walk the halls together, the best of friends. If you know the signs of dementia, you might know that sometimes it causes people to use unpredictable and, well, inappropriate language. I have never been easily offended, but I was a more than a little shocked to be called a few less than flattering names by women I had never met before, especially women who were the same age as my grandmother.
I remember one of my fellow students saying, “oh, don’t worry about them, they don’t know what’s going on.” I am ashamed to say I ignored them for the first few days. They weren’t my patients and I didn’t really interact. Then, one day, as I was walking down the hall, I overheard one of the ladies saying that she just wished someone would listen. She was asking, why don’t they listen? I stopped. I looked at her and realized she does understand, just in different ways. Then I listened…and I learned. She had wants, needs, desires for companionship. Someone to stroll with her, even if she wasn’t quite “herself” at the moment. She just needed a friend.
Fact: People with dementia may not be able to communicate verbally in a way that we’re used to with them, but it’s still important to reach out to them. Engage their other senses. Use touch, music, or even just your soothing presence.
Myth: A diagnosis of dementia means life is over.
For my last story, I am going to change a few details to protect a friend whose family still believes that dementia is a stigma that should be hidden. My friend’s uncle was diagnosed with dementia, except he doesn’t know it. His wife hid it from him because she is afraid that he’ll see it as a death sentence. She has hidden it from most of the family, as well. Only one of his kids knows about it. The rest have no idea, which leads to some devastating family feuds when he acts “inappropriately.”
Because his condition is hidden from him, he doesn’t have access to the best medications. His wife does give him some medications as prescribed by his doctor, but if he himself was an active part of his treatment, his care would improve significantly.
Fact: Many, many people with dementia go on to live active and meaningful lives for years after the diagnosis.
While all three of these stories deal with different myths surrounding dementia, one thing is common throughout: in each case, the stigma associated with it led to a breakdown in communication and some heartbreaking consequences.
Visit Dementia Friends Canada and find out more about how you can end the stigma. While you are visiting the website, check out their social media sites as well to learn more ways that you can get involved. Become a Dementia Friend today by signing up on the Dementia Friends Wall. You’ll be glad you did!
Have you ever had experience with dementia? I would love if we could share our experiences in the comments below and get more people talking about this!
This post has been generously sponsored by Dementia Friends Canada, the opinions and language are my own.