(Left to right) Vickie Naylor, Bernadine Clay, and Donna Maxey read a memory prompt as they take part in the Sharing History through Active Reminiscence and Photo-Imagery (SHARP) study, September 20, 2017.
OHSU/Kristyna Wentz-Graff
That your risk of Alzheimer’s disease depends on your salary, what you ate as a child, or the block where you live may seem implausible. But researchers are discovering that social determinants of health (SDOH) play an outsized role in Alzheimer’s disease and related dementias, possibly more than age, and new strategies are emerging for how to address these factors.
At the 2022 Alzheimer’s Association International Conference, a series of presentations offered evidence that a string of socioeconomic factors—such as employment status, social support networks, education and home ownership—significantly affected dementia risk, even when adjusting data for genetic risk. What’s more, memory declined more rapidly in people who earned lower wages and slower in people who had parents of higher socioeconomic status.
In 2020, a first-of-its kind study in JAMA linked Alzheimer’s incidence to “neighborhood disadvantage,” which is based on SDOH indicators. Through autopsies, researchers analyzed brain tissue markers related to Alzheimer’s and found an association with these indicators. In 2022, Ryan Powell, the lead author of that study, published further findings that neighborhood disadvantage was connected with having more neurofibrillary tangles and amyloid plaques, the main pathological features of Alzheimer's disease.
As of yet, little is known about the biological processes behind this, says Powell, director of data science at the Center for Health Disparities Research at the University of Wisconsin School of Medicine and Public Health. “We know the association but not the direct causal pathway.”
The corroborative findings keep coming. In a Nature study published a few months after Powell’s study, every social determinant investigated affected Alzheimer’s risk except for marital status. The links were highest for income, education, and occupational status.
Clinical trials on new Alzheimer’s medications get all the headlines but preventing dementia through policy and public health interventions should not be underestimated.
The potential for prevention is significant. One in three older adults dies with Alzheimer's or another dementia—more than breast and prostate cancers combined. Further, a 2020 report from the Lancet Commission determined that about 40 percent of dementia cases could theoretically be prevented or delayed by managing the risk factors that people can modify.
Take inactivity. Older adults who took 9,800 steps daily were half as likely to develop dementia over the next 7 years, in a 2022 JAMA study. Hearing loss, another risk factor that can be managed, accounts for about 9 percent of dementia cases.
Clinical trials on new Alzheimer’s medications get all the headlines but preventing dementia through policy and public health interventions should not be underestimated. Simply slowing the course of Alzheimer’s or delaying its onset by five years would cut the incidence in half, according to the Global Council on Brain Health.
Minorities Hit the Hardest
The World Health Organization defines SDOH as “conditions in which people are born, work, live, and age, and the wider set of forces and systems shaping the conditions of daily life.”
Anyone who exists on processed food, smokes cigarettes, or skimps on sleep has heightened risks for dementia. But minority groups get hit harder. Older Black Americans are twice as likely to have Alzheimer’s or another form of dementia as white Americans; older Hispanics are about one and a half times more likely.
This is due in part to higher rates of diabetes, obesity, and high blood pressure within these communities. These diseases are linked to Alzheimer’s, and SDOH factors multiply the risks. Blacks and Hispanics earn less income on average than white people. This means they are more likely to live in neighborhoods with limited access to healthy food, medical care, and good schools, and suffer greater exposure to noise (which impairs hearing) and air pollution—additional risk factors for dementia.
Related Reading: The Toxic Effects of Noise and What We're Not Doing About it
Plus, when Black people are diagnosed with dementia, their cognitive impairment and neuropsychiatric symptom are more advanced than in white patients. Why? Some African-Americans delay seeing a doctor because of perceived discrimination and a sense they will not be heard, says Carl V. Hill, chief diversity, equity, and inclusion officer at the Alzheimer’s Association.
Misinformation about dementia is another issue in Black communities. The thinking is that Alzheimer’s is genetic or age-related, not realizing that diet and physical activity can improve brain health, Hill says.
African Americans are severely underrepresented in clinical trials for Alzheimer’s, too. So, researchers miss the opportunity to learn more about health disparities. “It’s a bioethical issue,” Hill says. “The people most likely to have Alzheimer’s aren’t included in the trials.”
The Cure: Systemic Change
People think of lifestyle as a choice but there are limitations, says Muniza Anum Majoka, a geriatric psychiatrist and assistant professor of psychiatry at Yale University, who published an overview of SDOH factors that impact dementia. “For a lot of people, those choices [to improve brain health] are not available,” she says. If you don’t live in a safe neighborhood, for example, walking for exercise is not an option.
Hill wants to see the focus of prevention shift from individual behavior change to ensuring everyone has access to the same resources. Advice about healthy eating only goes so far if someone lives in a food desert. Systemic change also means increasing the number of minority physicians and recruiting minorities in clinical drug trials so studies will be relevant to these communities, Hill says.
Based on SDOH impact research, raising education levels has the most potential to prevent dementia. One theory is that highly educated people have a greater brain reserve that enables them to tolerate pathological changes in the brain, thus delaying dementia, says Majoka. Being curious, learning new things and problem-solving also contribute to brain health, she adds. Plus, having more education may be associated with higher socioeconomic status, more access to accurate information and healthier lifestyle choices.
New Strategies
The chasm between what researchers know about brain health and how the knowledge is being applied is huge. “There’s an explosion of interest in this area. We’re just in the first steps,” says Powell. One day, he predicts that physicians will manage Alzheimer’s through precision medicine customized to the patient’s specific risk factors and needs.
Raina Croff, assistant professor of neurology at Oregon Health & Science University School of Medicine, created the SHARP (Sharing History through Active Reminiscence and Photo-imagery) walking program to forestall memory loss in African Americans with mild cognitive impairment or early dementia.
Participants and their caregivers walk in historically black neighborhoods three times a week over six months. A smart tablet provides information about “Memory Markers” they pass, such as the route of a civil rights march. People celebrate their community and culture while “brain health is running in the background,” Croff says.
Photos and memory prompts engage participants in the SHARP program.
OHSU/Kristyna Wentz-Graff
The project began in 2015 as a pilot study in Croff’s hometown of Portland, Ore., expanded to Seattle, and will soon start in Oakland, Calif. “Walking is good for slowing [brain] decline,” she says. A post-study assessment of 40 participants in 2017 showed that half had higher cognitive scores after the program; 78 percent had lower blood pressure; and 44 percent lost weight. Those with mild cognitive impairment showed the most gains. The walkers also reported improved mood and energy along with increased involvement in other activities.
It’s never too late to reap the benefits of working your brain and being socially engaged, Majoka says.
In Milwaukee, the Wisconsin Alzheimer’s Institute launched the The Amazing Grace Chorus® to stave off cognitive decline in seniors. People in early stages of Alzheimer’s practice and perform six concerts each year. The activity provides opportunities for social engagement, mental stimulation, and a support network. Among the benefits, 55 percent reported better communication at home and nearly half of participants said they got involved with more activities after participating in the chorus.
Private companies are offering intervention services to healthcare providers and insurers to manage SDOH, too. One such service, MyHello, makes calls to at-risk people to assess their needs—be it food, transportation or simply a friendly voice. Having a social support network is critical for seniors, says Majoka, noting there was a steep decline in cognitive function among isolated elders during Covid lockdowns.
About 1 in 9 Americans age 65 or older live with Alzheimer’s today. With a surge in people with the disease predicted, public health professionals have to think more broadly about resource targets and effective intervention points, Powell says.
Beyond breakthrough pills, that is. Like Dorothy in Kansas discovering happiness was always in her own backyard, we are beginning to learn that preventing Alzheimer’s is in our reach if only we recognized it.
In 2015, about a year before he was diagnosed with terminal lung cancer, John Vlahos posed for a picture with his son, James.
(Courtesy James Vlahos)
In 2016, when my family found out that my father was dying from cancer, I did something that at the time felt completely obvious: I started building a chatbot replica of him.
I simply wanted to create an interactive way to share key parts of his life story.
I was not under any delusion that the Dadbot, as I soon began calling it, would be a true avatar of him. From my research about the voice computing revolution—Siri, Alexa, the Google Assistant—I knew that fully humanlike AIs, like you see in the movies, were a vast ways from technological reality. Replicating my dad in any real sense was never the goal, anyway; that notion gave me the creeps.
Instead, I simply wanted to create an interactive way to share key parts of his life story: facts about his ancestors in Greece. Memories from growing up. Stories about his hobbies, family life, and career. And I wanted the Dadbot, which sent text messages and audio clips over Facebook Messenger, to remind me of his personality—warm, erudite, and funny. So I programmed it to use his distinctive phrasings; to tell a few of his signature jokes and sing his favorite songs.
While creating the Dadbot, a laborious undertaking that sprawled into 2017, I fixated on two things. The first was getting the programming right, which I did using a conversational agent authoring platform called PullString. The second, far more wrenching concern was my father's health. Failing to improve after chemotherapy and immunotherapy, and steadily losing energy, weight, and the animating sparkle of life, he died on February 9.
John Vlahos at a family reunion in the summer of 2016, a few months after his cancer diagnosis.
(Courtesy James Vlahos)
After a magazine article that I wrote about the Dadbot came out in the summer of 2017, messages poured in from readers. While most people simply expressed sympathy, some conveyed a more urgent message: They wanted their own memorializing chatbots. One man implored me to make a bot for him; he had been diagnosed with cancer and wanted his six-month-old daughter to have a way to remember him. A technology entrepreneur needed advice on replicating what I did for her father, who had stage IV cancer. And a teacher in India asked me to engineer a conversational replica of her son, who had recently been struck and killed by a bus.
Journalists from around the world also got in touch for interviews, and they inevitably came around to the same question. Will virtual immortality, they asked, ever become a business?
The prospect of this happening had never crossed my mind. I was consumed by my father's struggle and my own grief. But the notion has since become head-slappingly obvious. I am not the only person to confront the loss of a loved one; the experience is universal. And I am not alone in craving a way to keep memories alive. Of course people like the ones who wrote me will get Dadbots, Mombots, and Childbots of their own. If a moonlighting writer like me can create a minimum viable product, then a company employing actual computer scientists could do much more.
But this prospect raises unanswered and unsettling questions. For businesses, profit, and not some deeply personal mission, will be the motivation. This shift will raise issues that I didn't have to confront. To make money, a virtual immortality company could follow the lucrative but controversial business model that has worked so well for Google and Facebook. To wit, a company could provide the memorializing chatbot for free and then find ways to monetize the attention and data of whoever communicated with it. Given the copious amount of personal information flowing back and forth in conversations with replica bots, this would be a data gold mine for the company—and a massive privacy risk for users.
Virtual immortality as commercial product will doubtless become more sophisticated.
Alternately, a company could charge for memorializing avatars, perhaps with an annual subscription fee. This would put the business in a powerful position. Imagine the fee getting hiked each year. A customer like me would find himself facing a terrible decision—grit my teeth and keep paying, or be forced to pull the plug on the best, closest reminder of a loved one that I have. The same person would effectively wind up dying twice.
Another way that a beloved digital avatar could die is if the company that creates it ceases to exist. This is no mere academic concern for me: Earlier this year, PullString was swallowed up by Apple. I'm still able to access the Dadbot on my own computer, fortunately, but the acquisition means that other friends and family members can no longer chat with him remotely.
Startups like PullString, of course, are characterized by impermanence; they tend to get snapped up by bigger companies or run out of venture capital and fold. But even if big players like, say, Facebook or Google get into the virtual immortality game, we can't count on them existing even a few decades from now, which means that the avatars enabled by their technology would die, too.
The permanence problem is the biggest hurdle faced by the fledgling enterprise of virtual immortality. So some entrepreneurs are attempting to enable avatars whose existence isn't reliant upon any one company or set of computer servers. "By leveraging the power of blockchain and decentralized software to replicate information, we help users create avatars that live on forever," says Alex Roy, the founder and CEO of the startup Everlife.ai. But until this type of solution exists, give props to conventional technology for preserving memories: printed photos and words on paper can last for centuries.
The fidelity of avatars—just how lifelike they are—also raises serious concerns. Before I started creating the Dadbot, I worried that the tech might be just good enough to remind my family of the man it emulated, but so far off from my real father that it gave us all the creeps. But because the Dadbot was a simple chatbot and not some all-knowing AI, and because the interface was a messaging app, there was no danger of him encroaching on the reality of my actual dad.
But virtual immortality as commercial product will doubtless become more sophisticated. Avatars will have brains built by teams of computer scientists employing the latest techniques in conversational AI. The replicas will not just text but also speak, using synthetic voices that emulate the ones of the people being memorialized. They may even come to life as animated clones on computer screens or in 3D with the help of virtual reality headsets.
What fascinates me is how technology can help to preserve the past—genuine facts and memories from peoples' lives.
These are all lines that I don't personally want to cross; replicating my dad was never the goal. I also never aspired to have some synthetic version of him that continued to exist in the present, capable of acquiring knowledge about the world or my life and of reacting to it in real time.
Instead, what fascinates me is how technology can help to preserve the past—genuine facts and memories from people's lives—and their actual voices so that their stories can be shared interactively after they have gone. I'm working on ideas for doing this via voice computing platforms like Alexa and Assistant, and while I don't have all of the answers yet, I'm excited to figure out what might be possible.
[Adapted from Talk to Me: How Voice Computing Will Transform the Way We Live, Work, and Think (Houghton Mifflin Harcourt, March 26, 2019).]
