Twenty-five years ago, a group of Alzheimer’s caregivers started meeting at the Amherst Public Library.
They’ve gathered faithfully on Wednesdays ever since and are now boast the longest-running support group in the Alzheimer’s Association Cleveland Area Chapter.
“What’s really valuable is people share with each other strategies they found work for them,” said Judy Ryan.
A former director at the library, she joined the support group five years ago> Her husband, David, had Alzheimer’s disease and passed away in 2013.
David had always had trouble remembering names but in 2010 started showing strange memory loss. He also had problems with organization, unable to move from step to step on projects such as filling out tax forms.
“He spent days trying to file our taxes that year,” Ryan remembered. “When he didn’t work, he got frustrated and angry.”
“For Christmas that year, I bought him a Sears big tool (chest) that had to be assembled. He had always been able to do anything with his hands. That turned out to be two or three weeks of a nightmare,” she said. “He just couldn’t do it.”
Time wore on and David lost more and more of his abilities, living partially in the past and suffering from delusions.
Sometimes he thought there was a woman living in the basement. At points he didn’t recognize his own adult daughter.
It was a heartbreaking time for Ryan. She turned to the Amherst Alzheimer’s support group for comfort and direction.
Her story, sadly, is common.
Today, more than five million Americans are living with the disease, according to the Alzheimer’s Association. By 2050, it’s estimated up to 16 million will be diagnosed.
Within the next decade, 19 states will see a 40 percent or greater jump in the number of residents with Alzheimer’s, the group says.
There is no cure. Helping a loved one live with Alzheimer’s is very difficult, with 60 percent of caregivers rating their emotional stress levels as “very high” and 40 percent dealing with depression.
That’s where groups such as the one in Amherst and people such as Basabi Ratnaparkhi become so important.
Executive director of Eliza Jennings — a Lakewood-based non-profit that helps seniors with respite, housing, and care — she has been involved in the health care field for more than 20 years.
Ratnaparkhi has been involved with the Amherst support group since its inception in September 1990 and remembers how it started with a small group of three or four people.
There have been attendance ups and downs over the decades but there’s always been a core group of about six. The group, she said, has provided caregivers of people with Alzheimer’s a place to share their feelings, find companionship, and get insight from experts.
Some support groups have moved online, providing anonymity. But Ratnaparkhi said there is great worth in having face-to-face contact with others caring for family members or friends with Alzheimer’s.
The group is about offering understanding, she said.
It’s also open to caregivers of those with other forms of dementia.
Steffani Baker, an educator for the Alzheimer’s Association Cleveland Area Chapter, said Alzheimer’s is only one very specific type of aging-related disease that affects the brain, though it is the most common. There are actually more than 70 types of progressive brain disease.
Vascular dementia, for instance, affects patients who have had heart attacks or strokes. All forms of dementia are marked by changes in behavior, including how people process information, the vocabulary they use, personality changes, and short or long-term memory loss.
The number one risk factor for such diseases, Baker said, it age.
One in nine Americans over 65 have a progressive brain disease. Among people 85 and older, the rate jumps to one in three.
Over the past quarter century, doctors have learned much about Alzheimer’s and related diseases, Baker said. That means patients are living longer — and in turn caregivers have a longer road ahead.
The Amherst support group plans to continue to meet. At 6 p.m. on Wednesday, Oct. 21, the group will celebrate its milestone with cake and a party at the Amherst Public Library.
All who have attended in the past are invited to join.
Jason Hawk can be reached at 440-988-2801 or @EditorHawk on Twitter.