‘Dementia Friends’ Changing the Way We Think About Dementia

Health Wellness

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It’s difficult to see a parent, grandparent, aunt, uncle and especially one’s spouse be stricken with dementia. It doesn’t just make the person forgetful, but it can change their entire personality and eventually leave them helpless to take care of themselves. They become dependent on family, friends or are dumped off in a nursing home or senior center.

Many of us have or have had, experience with someone suffering from some form of dementia, including Alzheimer’s disease. It can be frustrating, tiring, endless, emotionally, physically and financially grueling, but most of all, it’s a sad tragedy played out far too often.

My oldest daughter spent some years working in adult daycare and seeing dementia patients of all ages really affected her. From one older lady who constantly asked if she could go home now to others who not only didn’t recognize their family, but didn’t even know who they were.

When I was in college, I worked as an orderly on the intensive care ward of a nursing home and we had our share of dementia patients at varying stages of the disease. After the first night of working in the nursing, I came home and cried and said I couldn’t go back, but my sister-in-law told me that these people needed someone to help them and if I was strong enough to ride bulls that I was strong enough to handle this job, so I went back and worked the entire semester until I got very sick and had to quit.

Even though that was over 45-years ago, I still vividly remember many of those patients (rather they were people, not just patients). Mary was one lady who was completely mindless and helpless, but I still managed to steal time to sit and talk to her even though she didn’t know who I was. Ed was a man in his early 90s who had been a minister and counselor. His family said that he was a very devout and very prim and proper man, but due to the dementia, Ed frequently stripped off his clothes and go visiting the ladies, which was completely out of character for him.

There is a social effort known as Dementia Friends who is trying to help open up a healthy discussion with others about dementia and to bring people to a whole new understanding about the condition.

Last November, they organized a public event in North Haven, Connecticut. At the very beginning, they asked the audience of about 100 people to write down 5 words that they associated with dementia.

Then one-by-one, six people with Alzheimer’s took the stage and talked about their lives with dementia. They spoke openly and deeply about what it was like.

Afterwards, the audience was asked to once again write down 5 words associated with dementia, base upon what they had heard.

Erica DeFrancesco, a clinical assistant professor of occupational therapy at Quinnipiac University, helped organize the event and reported:

“‘Without exception, the words people used had changed — from ‘hopeless’ to ‘hope,’ from ‘depressed’ to ‘courageous,’ from ‘empty’ to ‘fulfilled’.”

According to their website:

“Dementia Friends USA is a global movement that is changing the way people think, act, and talk about dementia. Developed by the Alzheimer’s Society in the United Kingdom, the Dementia Friends initiative is underway in the USA. By helping everyone in a community understand what dementia is and how it affects people, each of us can make a difference for people touched by dementia.”

The organization currently lists over 13.300 people who have registered with the group nationwide. They have chapters in Arizona, California, Connecticut, Hawaii, Illinois, Indiana, Maryland, Massachusetts, Michigan, Minnesota, Ohio, North Carolina, Virginia, Wyoming. Worldwide, they boast about 14 million people in 33 countries that are involved with Dementia Friends.

The more everyone knows about dementia, the better equipped we are when it hits our own family. Like so many other things in life, the more we understand, the better off everyone is. If you or anyone you know suffers from some form of dementia, take time to join and learn more about it. It will make all the difference to your loved one or friend and to you.

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