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Weathering the changes: Education, communication crucial to people living with Alzheimer's
The Evening News and The Tribune - 6/17/2017
June 17--NEW ALBANY -- Joe and Ann Bishop built a life together. They raised five children and have been there for each other through life's ups and downs throughout their marriage.
When he was diagnosed with Alzheimer's disease three years ago at age 67, there was no question for Ann that she'd be there.
"I said 'you don't have to worry; I'm going to take care of you,'" Ann said.
The two went to the doctor because Joe had been having some memory issues that Ann felt might need to be checked out.
"And so we went and the doctor said to Joe, 'how are you doing?' And he said 'just fine,'" Ann recalled. "And I said well, I've got a list." Joe had been forgetting things a lot. The doctor ran tests, eliminating causes such as thyroid problems or vitamin deficiencies.
"If all of those were OK, which all of his were OK, then all they can do is assume you have Alzheimer's," Ann said.
"I never thought that might be it. I'm probably still in a little bit of denial."
MAKING PROGRESS ON DIAGNOSIS
According to the Alzheimer's Association, more than 5 million people are living with Alzheimer's in the U.S. -- and that number is expected to climb to 16 million by 2050. Medicaid costs to care for people with Alzheimer's have crested $913 million this year, with an expected 30.9 percent growth by 2025.
No cure yet exists for Alzheimer's, a progressive brain degeneration that is a common form of dementia, and the causes of the disease are not well-understood by the medical community. Medications may delay or soften some symptoms in some patients. And as people become more educated on the disease, they can help their loved ones get early detection and improve their quality of life.
Ben Schoenbachler, an area doctor who works with dementia patients, said that even just a few decades ago, diagnoses happened often only in late stages.
"In the 1970s, you wouldn't diagnose Alzheimer's unless you had a brain biopsy [during] autopsy, which is kind of pointless," he said. "[Or the] diagnosis was made when someone was severely demented but having a lot of problems. They'd be at least in the moderate stage if not beyond."
But more awareness is helping with early detection, crucial to the well-being of patients and their families, he said.
"It's really useful for the patient to know that they have a problem," he said. "If you wait too late, the self-awareness in the part of the brain that helps you monitor deficiencies can be itself impaired. So you'll have people who they don't think that they have a problem with their memory, and their memory is so bad that they can't learn that they have a problem with their memory."
Late diagnosis also increases the patients' chances to incur other issues such as confusion and paranoia.
"If they don't think that they have Alzheimer's and all of a sudden their son comes in and wants to take over the finances, they may say 'oh, he's trying to take all my money,'" Schoenbachler said.
Alzheimer's also exacts a toll on caregivers; the rate of clinical depression in caregivers is 1 in 3. Often uncompensated, education can help them fine ways to cope.
"It's hard enough just having to do the extra work to take care of the things the patient used to take care of themselves," Schoenbachler said. "Imagine if you had a loved one you were taking care of and they not only didn't thank you, but accused you of stealing their money and stealing their glasses and poisoning their food. It really would be kind of a hard thing to have to go through."
He recommends to seek information and to see a doctor if there is any concern, although it may not be Alzheimer's or another form of dementia.
"It's never a good idea to ignore a problem and hope it goes away, even if you're not sure what type of help is available," he said. "The sooner the better as far as getting evaluated."
COMMUNICATING WHILE YOU CAN
Elizabeth Cook, community outreach coordinator at the Alzheimer's Association of Greater Kentucky and Southern Indiana, said communication and education in the early stages of the disease are important to help patients and their caregivers accept and work through the changes they experience.
She is one of the facilitators for an eight-week program that helps get those conversations started early-on. It's a social setting that starts with a meal. The patients and their caregivers then split into group discussions.
"We're just processing the disease and the expectations and talking out some of those key components," she said. "I think the more you educate yourself, the more you surround yourself with people that understand and are going through the same thing, the more empowering it can become."
This means also helping patients talk to their loved ones about the patients' wishes for when the disease progresses and they can no longer make those decisions.
"Eventually those with the disease lose their voice -- sometimes very quickly," Cook said. "It's not like breast cancer, where you can have somebody with the disease talking about how they feel about the condition or how they feel about what could happen in the future.
"Communication is very important and it does change with the needs of the person with the memory loss."
There is a certain amount of brain degeneration and memory loss that comes with age, Cook said. Not all of it is dementia or Alzheimer's. Sometimes a person may misplace their keys, for instance, but retrace their steps to find them.
"But I think what we notice more with the dementia, specifically Alzheimer's, is maybe you come in and you put your keys down and you can't retrace your steps," she said. "You don't quite remember what rooms you were in and maybe you don't remember if you had lunch.
"And it becomes continual and it becomes more and more impeding. It's not a one-time occurrence. It's a daily issue."
FACING THE FUTURE TOGETHER
Joe is still in the early stage of the disease and Ann said she hopes it is moving slowly. The two went through the eight-week program and picked up some things to help, plus some that they've come up with on their own.
"Each day, I have a dry erase board and I write down two or three things that we're doing -- if I'm going somewhere, if he's going somewhere," Ann said. Although he doesn't wander off, Ann uses the phone finding function on Joe's iPhone to make sure he's safe.
"If he decides to go out for a walk -- I've come home and he's not here -- I can check that and see he's over on the side of the neighborhood," Ann said.
And the first thing Joe does each morning is put the phone in his pocket.
"I told her 'you know where I was,'" he joked. "You were tracking me. I can't hide anything."
The two ride bikes together, sometimes 15-25 miles a day. It's something they've always shared a passion for and now is even more important. Exercise can help Alzheimer's because of the increased blood flow to the brain.
The Bishops ride in a bike group called the Slow Spokes, an offshoot of the Southern Indiana Wheelmen. Joe recently started riding again after a hiatus.
"His main incentive is to get over to Charlestown Road to get to Coffee Crossing," Ann said with a laugh.
"Their coffee is wonderful," Joe added. "I'm addicted to it now."
The two are taking this new part of their lives in stride, just as they've crossed other life transitions together.
"I always say everybody's got something; no matter how bad you are, there is somebody out there that's worse, in anything," Ann said. She brought to mind an old cartoon.
"It's like the train with the caboose and we're hanging on and our feet are waving," she said. "We're still hanging on."
Cook said the most important thing to remember is that people living with Alzheimer's are still who they are.
"As they leave the early stages and they're more in the middle to late stages, people talk around them and not to them," she said. "People forget that they were people with careers and families and they've done all the same things you've done and they're still a person in there.
"And they still need that socialization. They still need to be needed and wanted. And we can't take that away from them."
SO YOU KNOW
--For more information on resources available to people living with Alzheimer's disease, their loved ones and caretakers, visit https://www.alz.org/.
--To contact the Alzheimer's Association of Greater Kentucky/Southern Indiana, call 502-451-4226 or visit 6100 Dutchman's Lane, Louisville.
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