Chances are that some 10,000 residents of The Villages have some form of Alzheimer’s.
That estimate is based on the Alzheimer’s Association projection that ten percent of all Americans over the age of 65 have the disease. Other experts believe that figure to be one out of nine.
That global reality as well as the personal impact on those with Alzheimer’s and other memory disorders and their family caregivers brought some 60 Villagers to the workshop ABC of Dementia conducted by Coping with Dementia, LLC, on Friday at the United Church of Christ at the Villages.
“Dementia is not a normal part of aging, but a process with diverse symptoms that affect everyone differently from the severity and rate of memory loss, to its rapid mood and personality swings,” explained presenter Debbie Selsavage, founder of the Citrus County-based initiative. “People need to understand their loved one’s unique behavior so they can properly respond.”
Selsavage offered several practical pointers on how families can best serve their loved ones. This included the correct manner to approach seated patients so as not to create confusion, fear and anxiety, and then how to assist to stand and guide them. She also demonstrated the best way to accomplish ‘activities of daily life’ such as teeth-brushing and at meal-times
Another ‘word of advice’ was offered by Selsavage’s co-principal of Coping with Dementia, Ed Youngblood. “Don’t let your loved one watch TV news,” he cautioned. “For example, they don’t realize that reports of a terrorist bombing come from a foreign city. They believe the chaos is right outside their door. Better that they watch old, familiar movies.”
Selsavage, after losing her husband to dementia in 2010 and realizing the inadequacy of information about the disease and lack of compassion assistance, founded her company in 2015. She became certified in various ‘person-centered techniques such as Positive Approach to Care, and quickly rose to the presidency of the ‘Alzheimer’s Family Organization’ that serves West Central Florida. Last year, her company conducted more than 36 workshops for 1,200 people; certified six business and nine churches as “Dementia Friendly,” and provided individual guidance to families.
The workshop attracted both those who now are dealing with family members with memory loss as well as those who continue to feel the impact of an illness that led to someone’s passing years ago.
For example, Gerri Neary and her sister Cherryl Capotosito, who live in adjoining homes in the Village of Hemingway, wanted to better understand how memory loss was affecting their mother.
“She knows every answer to the questions on Jeopardy,” said Gerri. “But, she forgets our names.”
Susan Bingel, and her husband, Jim, of the Village of Ashland, experienced the ravages of a disease that took the life of her grandmother.
“We want to be better prepared and know how to handle memory loss if this ever happened to another family member,” she said.
The workshop also included a brief update about recent clinical trials.
“No new drugs have been introduced in the past 17 years that treat Alzheimer’s. In fact, there are only four approved drugs –and they were developed for other diseases,” said Ruth Paiano, an investigator with BioClinica Research. “Our goal is to get information early about the disease and identify risk factors in order to stop its progression. Once destroyed, there is no way to rebuild damage tissue. That is why some patients can help us in our research and, at the same time, could benefit from clinical trials.”
Another proactive suggestion for family members with someone who could inadvertently wander away from home: Use a piece of gauze to wash your family member and then store it in a specially-marked bottle. “Local police have four bloodhounds that could easily follow the scent on the gauze,” Youngblood recommended. “We distribute these materials without cost.”
Then, Villages resident Jo Rhoades, also of Hemingway, demonstrated her own homemade fidget mat with a variety of ease-to-use ‘fuss’ objects woven into the fabric that occupy the thoughts and keep hands busy of those with dementia.
Youngblood concluded the workshop with a reminder for family caregivers: “Their reality is as valid to them as your reality is to you. They are not giving you a hard time. Rather, they are having a hard time.”
For more information about Coping with Dementia, contact Debbie Selsavage at deb@coping.today or (352) 422-3663.
Email Ruth Paiano at ruth.paiano@bioclinica.com to learn about participating in BioClinica’s clinical trials.
Call Jo Rhoades, at (757) 719-1058, if interested in obtaining her fidget mat.
