The Magicians of Memory
Could Alzheimer's be cured here? Maybe, right now, that's not the point
By Rob Smith July 24, 2023
For Joel Loiacono, it’s personal. His mother died of Alzheimer’s disease. His father-in-law and several aunts and uncles battled dementia.
As regional director for Eastern Washington and North Idaho of the Washington state chapter of the Alzheimer’s Association, Loiacono has spent the past 26 years working to reduce risk, promote early detection, and offer resources for care and support.
“It is very much one of those things where even if you understand the disease, it still breaks your heart losing the person who you knew as your parent,” Loiacono says. “I would step back sometimes and think, ‘You know better. You teach this stuff.’ And then I had to tell myself that I’m human.”
Because of an aging population and medical advances, Alzheimer’s has become a popular topic both in the medical community and the population at large. The sheer numbers of people diagnosed with Alzheimer’s are increasing, but the “risk” in the population remains at about 10%.
Annual federal funding for Alzheimer’s and dementia research will total more than $3.7 billion this year, about 165% of what it was just six years ago. It is expected to top $4 billion next year.
In Washington state, an estimated 140,000 people will have Alzheimer’s by 2025, a 16% increase from 2020. Almost 3,600 individuals in the state died of the disease in 2019. Nationally, almost 7 million Americans are living with Alzheimer’s. The vast majority of cases — though not all — occur in people 65 and older.
“Age remains the biggest risk factor for Alzheimer’s and other dementia,” says Dr. Kristoffer Rhoads, Ph.D., coleader of the Memory and Brain Wellness Center Clinic’s Project ECHO (Extension for Community Healthcare Outcomes) at Harborview Medical Center. He is also a team doctor for the NHL’s Seattle Kraken. “Regardless of how much stigma there is, we are more attuned to it as a societal problem.”
Alzheimer’s research is largely funded at the federal level. At least 30 entities across the state — including the Allen Institute, University of Washington, Washington State University, Benaroya Research Institute at Virginia Mason, and several private companies — have received funding from the National Institutes of Health to study the disease. The largest amount, about $208 million, has gone to Fred Hutch.
Forty percent of cases are preventable over the lifespan of Alzheimer’s. And a lot of people don’t know that, or appreciate that.
Scientists here have played a role in nearly every significant development in Alzheimer’s research and treatment. The Center for Healthy Aging at the Swedish Neuroscience Institute created a special clinic called the Women’s Brain Health Program to study the unique risks faced by women due to hormone changes during menopause. Project ECHO at The Memory & Brain Wellness Center at UW Medicine brings together care providers from across the state to discuss research and treatments. Doctors at UW’s Brain Imaging Center conduct research to understand the unique changes that occur during the early stages of the disease.
Like Loiacano, personal reasons motivate many of those fighting on the front lines. Rhoads watched his grandmother struggle as she aged. Caregiver advocate Mark Donham still tears up when recalling how the disease devastated his wife, Chris, who died 12 years ago. Dr. Nancy Isenberg, codirector of Project ECHO Dementia who helped develop the Center for Healthy Aging, remembers how Alzheimer’s robbed her grandmother of the ability to recognize those around her.
All those stories serve as daily motivation for Jim Wilgus, who joined the Alzheimer’s Association more than 13 years ago and has led the state chapter since 2019. He watched his grandmother, Regina, suffer from the disease and, more recently, his mother’s husband, Stanley. Because of his job, he says he hears at least a dozen heartbreaking stories each year about how Alzheimer’s has ravaged a friend or loved one.
Wilgus notes that there is now an awareness, concern, and urgency surrounding Alzheimer’s that didn’t exist as recently as half a dozen years ago. That’s in no small part because of an aging Baby Boomer population. If current trends continue, the Alzheimer’s Association says 13 million Americans will have the disease by 2050.
“When I began in 2010, this disease was clearly still living in the shadows of secrecy,” Wilgus says, adding that awareness has increased much as it did previously with both HIV and cancer, a sign that he considers overwhelmingly positive. “Yes, we need to help people one by one who are dealing with this disease and that’s a lot of what we do with our support staff and program services at the community level, but dealing with this at a large, systemic level in terms of policy change and research funding is how this is going to be solved.”
Alzheimer’s is the most common form of dementia, accounting for up to 80% of cases. Other forms include vascular dementia, caused by problems in blood supply to the brain; Lewy body dementia, a condition that affects movement and motor control; and alcohol-related brain damage.
Age increases risk, but it’s not a direct cause of Alzheimer’s. Genetics play a significant role, as do diet, exercise, and sleep. Doctors are increasingly promoting prevention: Heart disease, diabetes, high blood pressure, and high cholesterol are all risk factors.
Donham’s wife, Chris, was diagnosed with early-stage Alzheimer’s in her 40s. She knew she had a genetic predisposition because of a family history — a common cause of an early diagnosis. The disease also claimed her mother, sister, aunts, and uncles. Her nephew, in his 40s, was recently diagnosed. Researchers actually studied the family back in the ’80s and ’90s to create mice models for research.
Mark was 42 at the time, and was suddenly thrust into a caregiving role. It wasn’t completely unexpected, at least not at some point — Chris and her family had been involved in numerous clinical trials — but, at the same time, he was completely unprepared. “She did more spinal taps, MRIs, and PET scans than a human should have,” he says.
Because of that family history, the Donhams were more prepared than most. They had purchased long-term care insurance through Nordstrom, where Chris was employed as a buyer and merchandiser. Mark was able to quit his job to care full-time for his wife during the last five years of her life.
As Chris went from being a successful executive to someone who eventually couldn’t dress herself, Mark found the Alzheimer’s Association while seeking support. That helped, but he quickly noticed that most other caregivers and patients were decades older.
The role of caregivers is often overlooked. In Washington state, more than 63,000 paid health and personal care aides provided help in 2020, according to the state chapter, and more than 27% more will be needed by 2030. The Alzheimer’s Association says that more than 11 million Americans provide unpaid care for a family member or friend with Alzheimer’s or dementia at a value of nearly $340 billion. Unsurprisingly, two-thirds are women.
Today, Donham spends his days advocating policy changes and advising caregivers. He especially advises caregivers to seek support and “not to isolate.” It’s not as easy as it sounds.
“People will go to a support group. And most people have never been to a support group,” he says. “They don’t know what to expect. And that’s frightening.”
The burden of Alzheimer’s weighs heavily on women in other ways. Almost two-thirds of those with Alzheimer’s in the U.S. are women. That’s partially because women live longer, but Isenberg’s research finds that hormone changes at menopause, especially combined with typical risks such as diabetes or hypertension, make women particularly vulnerable to cognitive impairment.
She calls the Women’s Brain Health Program among the most innovative in the U.S. because of its focus on prevention. The program combines one-on-one appointments with shared medical visits for patients to learn how menopause affects brain, body, and mental health. Women, she adds, also have a higher risk of depression and other neuropsychiatric issues.
“If you’re a woman who’s in her late 40s, experiencing brain fog and insomnia, you might see your primary care doctor and then it’s kind of been dismissed,” says Isenberg, who has seen people as young as their 40s who have signs of dementia. “Forty percent of cases are preventable over the lifespan of Alzheimer’s. And a lot of people don’t know that, or appreciate that.”
Unfortunately, many primary care physicians simply don’t have the training to accurately diagnose dementia or other cognitive issues. Rhoads, the coleader of the Memory and Brain Wellness Center Clinic’s Project ECHO Dementia at Harborview Medical Center, says that fewer than half of people with dementia have a diagnosis.
“Primary care is exactly the first person people are going to talk to — if they talk to anybody — about concerns with memory,” he says. “And, by and large, primary care providers are not trained or equipped in terms of what to do with that. They have the best intentions, but it’s not a big part of their training.”
Several efforts at the University of Washington and the state level are out to change that, but fewer than one-half of health systems throughout the state have any “care pathways” to detect, diagnose, or treat dementia. Patients don’t normally see a doctor unless they’re experiencing symptoms of memory loss. And even those are tricky.
Misplacing your keys, for example, is common. So is fumbling with a credit card or struggling with a keypad at a grocery store. None of those are necessarily signs of cognitive decline, especially considering how “we’re constantly bombarded with distraction,” Isenberg notes. “I’m not worried about losing your keys. But if you can’t find your car in a parking lot, I’m more worried.”
Loiacano goes a step further. “Are you putting your keys in the oven or freezer?” he asks. “The symptoms of dementia are much more profound than normal aging. They rob you of your ability to live independently.”
While progress is palpable and new treatments are becoming increasingly available, experts caution that a cure isn’t imminent. Rhoads says a more realistic goal, at least in the short term, is to reach the point where Alzheimer’s can be successfully treated as a chronic disease.
“There might not be a cure, but you can still live with it,” he says. “Like with diabetes. It doesn’t mean you have to lose your eyesight or your toes. As a clinician, you can’t fix this. You can’t reverse it. So, how do you live as well as possible with it?”
When to seek medical attention
It can be difficult to distinguish between typical aging and more serious signs of Alzheimer’s or dementia. Here’s a list of warning signs from the Alzheimer’s Association.
- Memory loss that disrupts daily life.
- Challenges in planning or solving problems.
- Difficulty completing familiar tasks at home, at work or at leisure.
- Confusion with time or place.
- Trouble understanding visual images and spatial relationships.
- New problems with words in speaking or writing.
- Misplacing things and losing the ability to retrace steps.
- Decreased or poor judgment.
- Withdrawal from work or social activities.
- Changes in mood and personality.
Those seeking support also have lots of resources. Several can be found at UW Medicine’s Memory and Brain Wellness Center, depts.washington.edu/mbwc/