Creating Dementia-friendly Communities, One Dementia Friend at a Time

Research suggests a genetic connection between Parkinson’s disease, Alzheimer’s disease, and Lewy body dementia. So, when my father was diagnosed with Alzheimer’s, I became an advocate for dementia awareness.

I may or may not face dementia as my Parkinson’s progresses, but my dad is facing it now. Together, we are Batman and Robin. We do things together. The most important parts of our adventures are the opportunities to empower him. This could mean helping him pay the check if we go out to lunch (Batman: 1, Alzheimer’s: 0). It sounds simple, but it requires patience from others, and I am grateful when we receive it.

Recently, I was introduced to Dementia Friends USA, a program that is part of a global effort to raise dementia awareness in our communities. Last month, my mom and I attended a live session and became two of the 100,000 Dementia Friends in our country.

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What are Dementia Friends and dementia-friendly communities?

The program’s website notes that a Dementia Friend “is someone who, through viewing a series of online videos or attending a live session, learns about what it’s like to live with dementia and then turns that understanding into action.” Anyone can become a Dementia Friend.

The website also explains that, “Dementia friendly communities are villages, towns and cities where more people understand dementia, there is less fear and avoidance, and people living with dementia are included and supported to live independently for longer.”

Dementia is more than memory loss and confusion.

It can also cause vision changes. During the session, we participated in an interactive exercise that allowed us to simulate some of the vision changes that occur at various stages of the disease.

With dementia, the field of vision can decrease to about 12 inches around. To replicate this, we cupped our hands around our eyes, and could only see what was in front of us because our peripheral vision was limited. So, it is important to face a person with dementia, but also be aware that approaching them from the side may startle them.

As the disease progresses, the brain cannot process information from both eyes, so it begins to use only one. This will affect depth perception. For example, a person with dementia may reach across the table and eat from someone else’s plate, rather than their own. They see what’s directly in front of them, but not its dimensions.

The presentation ended with a video from the perspective of someone with dementia navigating their day. It sent a powerful message: Educating people and removing the stigma attached to disabilities can make a difference.

Do we have Parkinson’s- and disability-friendly communities?

Although I always have it, my Parkinson’s isn’t apparent to everyone. As a result, I was hesitant to ask for accommodations. Recently, my mindset changed. I asked for accommodations when I purchased tickets for upcoming travel and performances. However, when the time comes, do I explain myself? Do I explain that lines and steps make me nervous, resulting in tremors? I guess it will depend on the situation. But if someone wants to learn about Parkinson’s, I will take any opportunity to educate them.

September is World Alzheimer’s Month. Consider becoming a Dementia Friend, or encourage your employer to become a dementia-friendly business. Together, we can build communities where people with all disabilities, including dementia, are understood and accepted.

Or, perhaps we can take it a step further, and be patient and kind to everyone. Everyone struggles with something that others can’t see.

Is your community disability-friendly? Let me know in the comments below, or share your experiences at the Parkinson’s News Today Forums.

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.