The facets of Alzheimer’s explored

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Alzheimer’s disease affects more than just the patient, as family caregivers are also integral in the best way to manage the disease. 

Those aspects, along with the perspective of a regional support coordinator, were examined last week as the Washington chapter of the Alzheimer’s Association hosted a town hall at PeaceHealth Oct. 12. 

Although Washington Chapter Executive Director Bob Le Roy did provide an update on funding and research for the disease, the highlight was the panel where caregiver, patient and support coordinator were all represented with Southwest Washington residents.

The caregiver

Arlene Johnson, current director of Skamania County Senior Services, spoke from the perspective of a caregiver to family members with Alzheimer’s. She and her family had cared for her stepfather, who is still alive, and her father-in-law, who passed away.

For her stepfather, Johnson said she first noticed symptoms about nine years ago following her mother undergoing surgery.

“One of the early things that we recognized as we look back on it was that he kept buying different tools. He couldn’t find one, so he went out and bought something else,” Johnson said, noting that those gathered seemed to have seen similar situations. “Seventy-five screwdrivers later … that was one of those really early signs.”

For her father-in-law, one of the first signs was that he was talking to scammers on the phone, spending thousands of dollars in the process, even with the family’s attempts to circumvent, through changing numbers or even getting rid of the phone altogether.

Eventually safety concerns were mounting around the house, requiring him to be placed in an assisted living facility which he was not happy about, leaving the facility several times and occasionally showing signs of violence.

“This was so totally bizarre behavior for someone who had been such a wonderful person,” Johnson said, mentioning that the “salt of the earth” cliche really was his character. He was placed in memory care and following a stint at a geriatric psychiatric unit passed away about six months after.

“He was just so frustrated and so unlike himself that it was kind of OK at that point,” Johnson said.

Johnson said her father-in-law, upon initial evaluation, was not diagnosed and no resources were offered. Given her job she already knew of resources, though she had a similar message as the other panelists for the importance of more awareness about the disease, especially in those primary care doctors who are often the first professionals to be able to get to a diagnosis. 

Recently, Johnson’s husband had passed away from cancer, which she compared to the trials of providing care for Alzheimer’s patients.

“We’re kind of comparing apples to carrots here, but the stress of Alzheimer’s was 100 times worse than even the stress of my husband’s (cancer),” Johnson said. “When you are talking about the brain and memory, it’s just much worse.”

The patient

Speaking from the perspective of someone with Alzheimer’s was Julie Burger, a Clark County resident. Previous to her diagnosis she had been a volunteer for the American Red Cross for about five decades, including a stint on its national board as well as response to natural disasters including hurricanes Katrina and Sandy.

It took more than a year after she started experiencing cognitive decline before she told her husband, Les, a retired Major General with the U.S. Army. She said she was good at hiding it.

Her story differs than other cases as once she admitted she had cognitive decline she was quickly evaluated by a neuropsychologist. In 2016 she was diagnosed with early-stage Alzheimer’s, though fortunately she was able to undergo a positron emission tomography (PET) scan to confirm the diagnosis.

“A year and a half has gone by, and I find myself given to advocate, public awareness and early diagnosis,” Burger said.

Burger said she had a solid care team of a primary care doctor, a neurologist, a neuropsychologist, and her husband making sure the care is coordinated properly, among other benefits.

“I actually call him my walking, talking Google,” Burger said. “If I don’t know anything, I just ask him, and that eases my anxiety.”



Burger recounted her experiences growing up in Puerto Rico where the term “Alzheimer’s” was never said, but the care for the aging with mental decline was a given, more like an unwritten rule.

“I think that can be a problem, honestly. I think that we should know more about that disease,” Burger said.

Burger stressed that knowing one has the disease early on was beneficial. She was able to have conversations with her husband on how to let their children and family know she had the disease.

“There are so many things that if you know you have the disease early on you have time to plan, whereas all of the sudden you wake up and you find out you have Alzheimer’s, it’s scary,” Burger said.

Burger said oftentimes those who discover they have Alzheimer’s retreat from social life, something she avoided. She makes a point to tell people she has the disease, and inevitably she gets comments such as “you don’t look like you have Alzheimer’s” or “you don’t act like you have Alzheimer’s.”

“I’m thinking, what does someone who has Alzheimer’s look like?” Burger said. 

She reasoned that most people assume someone with the disease is in the dementia stage, whereas Burger is still in the early stages.

Burger’s attitude was upbeat about living with the disease. She managed to see the silver linings in a few ways.

“One of them is, I can hide my own Easter Eggs,” Burger said to laughter.

The support coordinator

Christina Marneris, Community Services program supervisor with the Area Agency on Aging and Disabilities of Southwest Washington, oversees the programs supporting seniors and caregivers in the area.

Up until this year Marneris said she didn’t have a personal story of dementia though that changed when her godmother was diagnosed.

From Marneris’ end it was important to include both patient and caregiver in the equation, saying the agency’s main mission was to find out “how do we support both the person who has Alzheimer’s or dementia, as well as those caregivers.”

Marneris also touched on some of the issues regarding resources and awareness that Johnson had highlighted.

“One of the most frustrating things … for an individual or a family is to spend hours and hours, or days and days to try to understand what is available,” Marneris said. 

The goal of the agency was to get families in connection with those resources.

Marneris mentioned that for every family caregiver the journey is different. She recounted one of the first caregiver conferences she attended, specifically when caregivers were asked what would help them out.

“We had a male caregiver who stood up and said ‘we need a boot camp for guys for caregiving,’” Marneris said, giving an example of how different situations call for different supports.

“That’s really what we want to do; we want to look at the whole person. We’re not looking at the disease, we are looking at the person and how best to support their family in this journey, and keeping mindful of that,” Marneris said.