The “Invisible Disability”

February 5, 2014

Some small towns around the world are taking a new tack with dementia… they are trying to become “dementia friendly”.

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In our Chapel Hill-based home care agency, we see that for some, a diagnosis of dementia or Alzheimer’s is treated as a stigma.  Like many diseases or disabilities, people who suffer from dementia can continue to live happy, productive lives with just a little assistance.

But for people to help, they need to know how.   This extends beyond just the immediate caregivers, to the larger community.

As an example, it’s common practice for businesses to have ramps so someone in a wheelchair can enter without assistance.  It obvious that if you are in a wheelchair, you don’t do steps.

Dementia is the “invisible disability”, because people suffering from the disease, especially in the early stages, show no outward inability to perform tasks.  The dementia sufferer can look like anyone.  Many dementia sufferers have also learned coping mechanisms that help them mask the disease.

There are two problems with dementia:  1) it’s not obvious to observers that you have the disability, and 2) people do not naturally know how to help you if you do.

Consider the experience of ordering in a restaurant.  The waiter might overwhelm you with a long list of choices.  The list might confuse anybody, but to a person with Alzheimer’s they can be impossible to decipher.

What we can do is simplify choices.  Instead of offering six specials, the server could start by saying, “Would you like chicken or fish?”    Instead of offering a list of coffee, teas, sodas and juices, the waitress could ask, “Do you want something hot or cold?”

These are simple ways to reduce the choices.

One town has opened a cafe specifically for people who have dementia.  It is a place where people can find sympathy and understanding.  It is also a place where with slight adjustments in service they can be allowed to feel as complete human beings.  They enter, are treated with dignity, interact with others, order lunch.  Just like normal.

If you ever studied a foreign language in another country, you get the idea.  If your speaking skills are rudimentary, you love it when someone speaks more slowly to you.  You are an intelligent person, with lots of interesting thoughts.  You just need someone who will speak slowly and clearly, and listen with a bit more attention.

As the number of people with dementia grows, the need for this consciousness will also grow.    With a little effort, every place be dementia-friendly.


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