Tuesday, October 15, 2013

Can it really be this simple?



I (John) focused particularly on presentations by persons with dementia.  As mentioned in an earlier post, the Dementia Working Group that was formed only a year ago now includes persons with dementia from 11 European nations. They are not waiting passively for society to toss them the occasional crumb – the Dementia Rights movement is gaining steam, and I hope it will find its way to American shores soon.

A gentleman from Scotland shared his remarkable story.  After being diagnosed with Lewy Body dementia he sunk into a period of depression and withdrawal; his “dark year,” he now calls it.  Then he and his wife hitched up their figurative pants and began making calls on their neighbors, explaining his circumstances.  They visited 30 homes near their own.  “As a result,” he explained, “I found I now had 60 sets of eyes watching over me, there to help if I became lost or had other difficulties.”  Then they began making visits to the shops and businesses he had long frequented, beginning with the newsstand, the post office and the supermarket.  “Now if they see me staring blankly, people help me sort out what I came in for.  They put my items into my bag.  They count out my money and give me my change.  They have given me back my life.”

Can it really be that simple?  Perhaps more so in a smaller community, but people really do want to be kind and helpful.  But before they can be helpful, they need to understand the situation, and it takes courage to overcome the fear of being stigmatized and ask for that help. 

A related conversation that unfolded in our final plenary focused on businesses that declare themselves “dementia friendly” and so identify themselves with a sign in the window.  The largest-scale effort of this type is in the U.K., fostered by the Dementia Action Alliance, and their chosen logo is a purple angel.  It can be found in shops, churches, and places of public accommodation.  Other nations employ different logos, but the purple angel seems poised to become the most universal.

But precisely what does it mean for a business to declare itself dementia friendly?   At a very minimum it means that a business publically declares that persons with memory loss of cognitive challenges are welcome there, but some worry that it may be entirely too easy to make such a declaration simply for the sake of public relations or competitive advantage (“Our bank is dementia friendly while the bank down the street is not!”).  Is there a commitment to training employees to recognize signs of dementia and extend hospitality and support?  How much training, and provided by whom?  Would such a declaration extend to thinking through the physical layout of the business to make it less confusing to persons with dementia?  Who should set the standards, if indeed there should be standards at all?

Which brings us back to the Dementia Working Group.  In the end, it was argued, only persons with dementia are equipped to determine whether an establishment is dementia friendly.  What we need, in other words, are dementia activists who will provide education, feedback, and constructive criticism.  As the Working Group proclaims, “nothing about us without us!”

Approaching local businesses has been on my screen for some time as a focus for the Fox Valley Memory Project, but there have been so many other initiatives to get up and going.  But I am ready to open this conversation in our region, beginning with the downtown Appleton business community.  The Americans with Disabilities Act ensures that all of our businesses are accessible to persons with physical limitations.  Now it is time for these businesses to take steps to make themselves equally accessible to persons with dementia and those who care for them.

5 comments:

  1. Hi there,

    I am a caregiver and just came across your blog.

    I have been a young(ish!) carer for my mother-in-law, who suffers from dementia, for the last three years now.

    I am in the process of creating a new poetry site primarily aimed at carers, but also people with dementia as well - http://dementiapoetry.com.

    The blog is an honest account of my experience of caring over the last few years in poems - some silly, some exasperated, some happy, some sad - of my last three years caring for my mother-in-law, who suffers from Alzheimer's disease, and is aimed at helping to support other caregivers in a similar position.

    If you would be happy to link to me, I would gladly return the favour!

    DG x

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