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Spouse or Partner Caregiver Forum
In This Together Lecture Series
I’ve been out of touch for awhile. All is well. Here’s what
I’ve been up to:
All of us here know that
no one should face dementia alone, but there are many folks out there
caught in the Alzheimer’s Ambush: confronted
with trouble they are unequipped to handle, with no help at hand and not even
knowing where to turn. Of course, this message board, and the Alz. Association
aims to help get people out of that situation, but a resource is only as
effective as its reach. It doesn’t help those who don’t know about it.
Knowing that there were people even in our small southeast
Michigan community who were uninformed, unprepared, and pretty well unraveled
in dealing with dementia, a small group at our church tried an experiment. On a
shoestring of a budget, we put together a program we called In This Together-Dementia Awareness © It was a weekly series of 12 talks about
various aspects of dementia and caregiving and the overall journey. I gave a
personal talk about my 11-year caregiving journey. Then there were classes
using material from the Alzheimer’s Association---Know The Ten Signs,
Understanding The Disease, and several others. We had a financial planner, and
a lawyer, who gave talks on financial and legal planning in a dementia context.
We had a gentleman living with dementia, and his wife, who happens to be a
professional dementia caregiver herself, give a joint talk about their family’s
journey. We also had a couple of caregiving skills workshops a la Teepa Snow’s
Our last talk, coming up next week, is one that several of
you provided input to a few months ago—the idea of a Dementia-Friendly Community.
This involves persuading businesses, banks, stores, restaurants, government
offices, police and fire and so on, to learn about dementia and the challenges
PWDs face in making their way day to day in a typical city or town. The premise
is that as people learn about the problems PWDs—their friends and neighbors—face,
they will adjust their business and organizational practices to make it less
difficult for PWDs to deal with them.
This “last” talk in our series is the first one dealing with
dementia at the community level. It may be the beginning of a community-wide
initiative. Regardless of whether we spur a Dementia-Friendly Community effort
right away, the series of talks has been successful: with zero paid
advertising, relying solely on things like store-window fliers and notices in
church bulletins and community calendars, we had about 50 people every week,
from not just our town, but from communities up to 25 miles away. We had
returning regulars, and new faces every week. And although a lot of people felt
alone when they walked in, I don’t think anyone did so when they left.
At each of the talks, we also had tables-full of free
literature from the Alzheimer’s Association and Canada’s and the UK’s
Alzheimer’s Societies, plus booklets and leaflets from NIH on many aspects of
Alzheimer’s and other dementias. No one left empty-handed either.
In collaboration with our program, the local library mounted an Alzheimer's exhibit, with Alzheimer's literature from the Alz. Association, the NIH and other sources, some posters with statistics and overview facts, and a selection of their own Alzheimer's-related books. Fliers at the library, of course, also advertised our program.
Written and spoken comments after every talk told us that we were meeting a
real need in the community. We connected people dealing with dementia--
themselves, or as caregivers, as family members, or concerned about having to
deal it with in the future—with the information and the resources they needed
to know about, but didn’t.
On one occasion, during my talk, I virtually saw the
lightbulb go on for someone in the audience. She perked up, she smiled. Oh, she
still had a loved one at home with a problem, but suddenly she understood his
behavior better, knew that she wasn’t alone, and realized she could get help.
Surely it was nothing especially brilliant I said; it was just a matter of
presenting information that had not been adequately put out there before.
Fact is, too many people know too little about dementia. The
program my friends and I ran here in southeast Michigan made a small dent in
that large problem, but I think we made a difference for at least a few sweet
people we brought in from the information wilderness. We each do what we can.
Just thought you might be interested.
This sounds like a wonderful program, Mr. Toad. Thank you for sharing.
Wow. Nice work, Jim. If there's something I can do from Texas to help, let me know.
Fantastic Mr Toad !
Thanks for the offer, Mike. I will reciprocate for you and
others: if anyone is interested in trying to set up a similar program, I’d be
happy to offer information and assistance in terms of what we did, how we
publicized it, and what lessons we learned.
Glad you liked the “Alzheimer’s: It’s a Disease Not A Disgrace” video. In a week or so I will try to post a video
about the Dementia Friendly Community talk coming up.