Pendleton man diagnosed with Alzheimer’s volunteers for clinical trials seeking to find treatment or cure to fatal disease

Published 5:00 am Thursday, April 11, 2024

The tea kettle steamed as Andrew Clark set down a mug beside it.

He moved around the kitchen of his Pendleton home with ease, knowing exactly where each utensil and ingredient is stored, despite a slight shaking in his hands and the necessary shuffling of his feet — the only hints that his 83-year-old body is declining.

But for Andrew, it’s not his body that worries him.

It’s his mind.

Andrew was diagnosed with mild cognitive impairment in 2019 after a few of his four children pointed out symptoms they’d noticed, and said he needed to be evaluated by a doctor.

Since his recent diagnosis with Alzheimer’s disease, he has set out to make the best of the situation.

“I have a disease that is invariably fatal,” said Andrew, a former state veterinarian for the Oregon Department of Agriculture. “I want to try to be as happy as I can be under the existent circumstances.”

He also wants to make a difference for people experiencing the same challenges. He has enrolled in four clinical trials through Oregon Health and Science University that all aim to help people with Alzheimer’s and cognitive impairment.

The diagnosis

It was around 2017 that Barbara Clark, 83, first noticed her husband seemed a little off sometimes.

Once, Andrew returned from a work trip to Africa and drove on the wrong side of the road, even going so far as to disagree with her that he was in the wrong lane.

She chalked it up to him getting older and didn’t say anything about it afterwards.

Another time, Andrew was giving a speech to the Oregon Cattlemen’s Association in Elgin and he barely mentioned cattle. Instead, he talked about how he met Barbara, and their early relationship and marriage in Africa.

“I did not know how to address it,” Barbara said. “I just — I stayed silent all the way home from Elgin because I thought, ‘Man, you blew it. Why were you doing that?’ ”

Looking back, she said, those instances were the earliest stages of Andrew’s mental decline.

So when two of their four children called a family meeting in June 2019, just after their parents’ 50th wedding anniversary, to talk about the changes they had noticed in their father, it was not a shock. By September, he had a diagnosis.

Andrew and Barbara’s daughter, Mary, said she and her siblings mostly noticed small short-term memory changes in their father. Andrew, who loves to offer tea and coffee to visitors, would start preparing the snack and then forget what he was doing, getting distracted by other tasks.

Mary, 48, lives in New York City, and she said the changes were most noticeable when she spent long periods with her dad. When he was diagnosed with mild cognitive impairment, she said, the family, who are all practical people, took on the challenge head-on, figuring out the logistics and taking things as they came, rather than being overcome by emotion.

“You can have an idea of what’s best for your parents, but they might not agree,” Mary said. “And particularly, my dad is pretty set in his ways and he knows what he likes. He’s always been that way and that really hasn’t changed.”

Additionally, she said, navigating aging with her parents has an added level of uncertainty because of her dad’s dementia.

“There’s no specific timeline,” she said of his disease. “You don’t know exactly when things are gonna fall off a cliff, or whatever.”

No treatments or cure

It wasn’t until her dad was recently diagnosed with Alzheimer’s that he started talking about it more openly with her.

“I get the sense that it’s having gone through this formal diagnosis that frees him up to be like, ‘OK, this is what it is,’” she said. “I haven’t really sat in depth and talked with my dad about it because, until recently, he has not really brought it up unless you brought it up.”

Mild cognitive impairment is not necessarily due to Alzheimer’s, but after intensive tests and screening at the OHSU Brain Institute, doctors have concluded that Andrew Clark’s impairment is caused by it.

Alzheimer’s is a brain disease with a gradual progression, but it’s different from normal aging. Researchers have connected a buildup of amyloid and tau proteins as the cause, according to neurologist Dr. Aimee Pierce, a clinician and researcher at OHSU with a focus on dementia. We all form amyloid and tau proteins, she said, but Alzheimer’s patients’ bodies cannot break them down anymore, so the proteins accumulate and become toxic.

The disease affects memory and thinking and can also affect an individual’s mood and personality. Eventually, it can degrade the brain to the point that it impairs physical functioning such as swallowing or breathing.

Ultimately, Alzheimer’s is deadly.

While there is a recent FDA-approved drug that slows its progression, there are no treatments that stop or cure the disease.

And Andrew, as of January 2024, has a buildup of amyloid plaques and tau tangles in his cerebral spinal fluid — a sure sign of Alzheimer’s.

Luckily for him, he is in the early stages of the disease, and his daily living and memory are not affected as much as they will be as time goes on. He can still cook, drive and work with power tools. He’s even consulting on the creation of continent-wide livestock disease control protocols in Africa, using the knowledge he gained while working in Tanzania in his young adulthood and what he learned as state veterinarian in Oregon.

And every morning, Andrew prepares coffee for himself and tea for his wife before they sit in armchairs by the window as she reads to him.

Trials for tribulations

Andrew committed his life to science and livestock population health; his aging is no different. Since his diagnosis, he has enrolled in four clinical trials through OHSU focused on helping people who have Alzheimer’s or other cognitive impairment.

One is longitudinal and is just to keep records during life and study the brain after death. Another is focused on his genes — the researchers are looking for genetic information that relates to Alzheimer’s.

The other two, however, have active interventions.

Dr. Amala Soumyanath is running a study on the effects of a botanical called Centella asiatica (also known as gotu kola) on memory. The plant has traditionally been used to help improve memory in India and other parts of Asia, and Soumyanath wants to see whether there can be a proven, rigorous scientific basis for its use.

“There is a very strong knowledge base there,” she said. “People have been using these herbs for a long time, many, many years — centuries — for particular conditions. So I think it’s worth sitting and paying attention to that.”

Researching traditional sources of care is important to Soumyanath because there is a wealth of knowledge and history in such plants, which have a higher likelihood of having the desired effect on the body versus the use of random plants.

“The way that we can maximize their use is by doing this rigorous type of science so that we can really understand how they work and why they work,” she said. “And that way, maybe, we can actually start to make good products that are likely to work.”

The study, a clinical trial informed by work done through the OHSU Botanical Dietary Supplements Research Center, could tell researchers whether the plant is capable of improving memory or, at least, stopping cognitive decline by showing that the plant targets the right part of the brain. Research participants, including Andrew, mixed a powder into a glass of water every day for six weeks during the double-blind trial, meaning neither he nor the researchers knew whether he was ingesting the Centella asiatica or a placebo.

Hopefully, for participants drinking the mix with gotu kola in it, there will be increased mitochondrial function (basically, more energy) and decreased oxidative stress (which can cause cell or tissue damage).

Andrew’s part in the study is done, but Soumyanath expects the study to continue for another few years, at least, since only 14 people have started the trial, which requires 48 participants. If all goes well with this stage of research, the next step will be a broader trial over a longer period of time.

‘Perfect lab rat’

The last of the studies that Andrew is taking part in, Viva-Mind, is locally run by the OHSU Layton Aging and Alzheimer’s Disease Research Center, though it is a national, phase two clinical trial. Pierce, the clinician and researcher with OHSU, is a principal investigator for the study.

The research tests whether the drug varoglutamstat can slow memory decline and thinking problems for people in the early stages of Alzheimer’s.

This trial phase’s goal is to determine whether there are signals indicating that the drug affects the amount of amyloid protein in a person’s spinal fluid, affects their brain activity or affects their memory. The study lasts 76 weeks, or about a year and a half; participants take four pills every morning and four every night. Testing occurs periodically throughout that time, with researchers taking vital signs and conducting memory and brain tests.

Pierce said research like this is vital to finding treatments for diseases such as Alzheimer’s.

“I think that trying to get an accurate diagnosis and potentially trying to volunteer for research is something that’s really proactive for people to do, and may help themselves, may help their families, but will certainly help the community,” she said.

Soumyanath agrees. Some people are hesitant to join research trials, but she said that “all these trials are scrutinized quite heavily before they even become available for people to join.”

Each is inspected by an institutional review board, which checks the study’s methodology and plans, and considers the ethics of conducting the trial.

Plus, participants can leave a trial at any time, for any reason, she said. People who participate never have to see the full trial through if they don’t want to.

“The other side is, we are totally grateful to people who join our trial, people like Andrew Clark, because we know that it’s a lot of time on their part,” Soumyanath said. “So it is kind of a service to the community in many ways. If you’re taking part in this trial, and if you’re someone who has a particular condition, there is hope that one day your contribution might lead to something that not only benefits you, but also benefits the wider community of people who might be in a similar health situation to what you are.”

Helping future people with dementia is exactly why Andrew wants to participate in these trials. His body is healthy, and physical health can be something that disqualifies people from participating in research trials. He doesn’t have that barrier — he’s a “perfect lab rat,” in his words.

“If something can be proven or disproven that will cure or mitigate whatever happens to somebody else later on down the line, so they do not die of Alzheimer’s, then that’s good,” he said. “My viewpoint is that if my situation is able to be made into something worthwhile for somebody else, then that’s great. You know, I’m gonna walk down the road and die, so if we can learn something, go for it.”

This is the first in a two-part series on living with Alzheimer’s. The stories explore the experience of aging with the added burden of dementia for the person with the disease as well as their loved ones.

For a full list of clinical trials, go to bit.ly/ohsutrials.

For the trials focused on aging and Alzheimer’s, go to bit.ly/ohsuaging.

• Call 988: Dialing this new three-digit number will connect you with a counselor 24 hours a day, seven days a week, any day of the year. If you’re in crisis, don’t hesitate to call.

• Call 911: In an emergency, the local dispatch center can help you get the help you need.

• Call 800-698-2392: The David Romprey Warmline, operated by Community Counseling Solutions, is not a crisis intervention service. Rather, it is a peer support program that connects callers with trained peer counselors who have lived experience in dealing with suicidal feelings, mental health issues, addiction and other life challenges. The toll-free number is staffed from 8 a.m. to midnight every day.

• Call 541-962-8800: This is the number for the Center for Human Development crisis intervention line. Crisis intervention is available 24 hours a day, 7 days a week, by calling the number and pushing option 6. CHD is a private, not-for-profit health organization located in La Grande that provides alcohol and drug, environmental health, mental health, public health, developmental disabilities, prevention and veterans services to the residents of Union County in Eastern Oregon.

Marketplace