Back around 2012, I had just earned my license to become an assisted living and memory care administrator, and my partner Ed and I were attending a lot of conferences to learn as much as we could about Alzheimer’s disease and other causes of dementia. We invariably came away from these events frustrated and disappointed. We heard a lot of researchers talking about plaques and tangles and Tau protein and the “stages” of Alzheimer’s, and on and on, but we heard nothing that could be remotely useful to families and care partners who were in the actual journey of dementia.
Don’t get me wrong, I understand the importance of looking for a cure, but in the meantime, what about care? Where does one go to learn about effective dementia care or where to find the resources to navigate this long and difficult journey? I had learned some effective techniques of care with my husband Albert, who had died from dementia in 2010, and I had begun to discover the theory and teachings of a few leading care practitioners, such as Teepa Snow, Naomi Feil, and Diana Waugh. But it was a slow process. As far as we knew, a one-stop learning opportunity did not exist.
Then one day, Ed said, “We need to organize a different kind of conference. It will address people in everyday language; there will be no medical and scientific jargon. It will talk about care, not cure. It will present the resources that are available to make life easier for caregivers.” We were not yet using the term “care partner,” but that is a story I have already addressed in previous columns.
So, with the enthusiasm of anyone who has no idea what he is doing, in September of 2014 we organized our first dementia conference for care partners. I said, “What will we call it?” Ed said, “It’s about helping people cope, so let’s call it the “Coping with Dementia Conference.” Little did we know that it would be so successful that a few months later, we would transfer its name to a new corporation dedicated to education and training.
When we opened the doors to our event, 200 people filed in! They looked worn, haggard, and hungry; they were in the difficult journey of dementia and looking for answers to make their lives easier and more manageable. That very day, I resigned my day job as an administrator and we embarked on our new adventure called Coping with Dementia LLC.
Coming up on April 20 will be our Ninth Annual Coping with Dementia Care Partner Conference. It will take place from 9:30 to 3:30 at Our Lady of Grace Catholic Church at 6 Roosevelt Boulevard in Beverly Hills, Florida. As always, it will be free, with lunch included.
Our keynote speaker will be Eileen Poiley, Director of Education at the USF Health Byrd Alzheimer’s Institute. Other speakers will include board-certified elder law attorney John Clardy, grief counselor Mary Ellen Shea, author Janice Martin, and several more. There will be more than two-dozen information tables offering free resources useful to families living with dementia. Seating will be limited to 200, and we are taking reservations at 352-422-3663. I hope to see you there!
What we’ve learned in nine years of organizing care partner conferences is that our initial assumption was correct. Eighty percent of American families do not want, or cannot afford to pay for professional care. They need the tools to keep their loved ones at home. Doctors and academicians will keep looking for that illusive cure, but until there is a cure, we will continue to need care. And when it comes to dementia care, we all deserve the best.
Until next time remember: “We all deserve the Best”
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