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Forum Seeks To Educate And Support Caregivers

Jim Levulis

A recent forum in Pittsfield sought to educate and support those caring for loved ones with dementia and Alzheimer’s.

Joan Fields has been a professional caregiver for the past two years, but has been helping relatives deal with the debilitating diseases for nearly 35 years.

“It started out with a grandmother,” Fields said. “After that my husband had a mother and three aunts. So there were four sisters. The four sisters got Alzheimer’s. The four brothers did not. So each one was diagnosed and got a different type of dementia or Alzheimer’s. One was early onset at 40 years-old with six children. One was a nun. One worked at GE. One was a homemaker. So they all had different types of family backgrounds and lives.”

Fields was one of more than 50 at the Memory Matters forum organized by Berkshire Area Health Education Center and Home Instead Senior Care. Dr. Jay Ellis was the keynote speaker.

Credit Jim Levulis / WAMC
More than 50 people attended the Memory Matters event at the Berkshire Hills Country Club Tuesday.

“Well you would have thought that a disease that affects 5.5 million people and caregivers for those 5.5 million people and is most the expensive illness affecting American citizens would get all kinds of research funding, but you would be wrong if you thought that,” said Ellis.

By 2050, it’s anticipated nearly 14 million Americans will suffer from Alzheimer’s, about 100 million worldwide. Alzheimer’s cost the United States $203 billion in 2012. A neurologist, Ellis has spent the past 40 years researching the disease and working with families impacted by it.

“Alzheimer’s is killing the economy,” Ellis said.  “It costs so much. When you are caregiver and you can’t work any longer because you have to stay home with your loved one, when the cost of services to be provided is so extraordinary and it goes on day after day and there’s no let up.”

Donna Smith is a franchise owner with Home Instead Senior Care. With about 800 offices nationwide, the organization provides in-home assistance to those suffering from memory-depleting diseases. Smith says the disease replaces every aspect of interaction a loved one has with that person, creating stress and health risks for the constant caregiver.

“What our caregivers do is to take over that role of care giving and let the loved one be a wife again, be a daughter again or be a son again,” said Smith.

Fields, who works for Home Instead, says being educated about the disease is a major aspect of care.

“You’ve got to realize you’re dealing with an illness and not the person,” Fields said. “So you can’t take it personally. If they’re having an episode where they’re angry, yelling and confused you have to wait for that to subside.”

Fields gives an example where being educated about how a person with Alzheimer’s thinks can change a situation.

“If you have a loved one who runs out of the house people tell you follow them in a car, go get them and keep after them,” Fields explained. “But that’s not how you deal with someone with dementia or Alzheimer’s’. You actually have to drive past them. Get out of your car and walk towards them. Establish a relationship. Wave to them. Make them feel at ease. Then you can walk with them. You actually end up walking to your car and say: ‘Oh here’s my car, would you like a ride?’”

People over 85 have between a 35 and 40 percent chance of getting Alzheimer’s. Dr. Ellis says while there are medications that treat symptoms and studies show remaining mentally active can delay the onset of the diseases, nothing conclusive has been found.

“Most of the medical treatments we provide shift what you get, shift when you get it, but everybody gets something,” Ellis said. “So delaying heart disease so that you get Alzheimer’s is a bad bargain.”

Jim is WAMC’s Associate News Director and hosts WAMC's flagship news programs: Midday Magazine, Northeast Report and Northeast Report Late Edition. Email: jlevulis@wamc.org
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