Alzheimer’s prevention may be less about new drugs, more about income, zip code and education
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.
For years, a continuous glucose monitor would beep at night if Dana Lewis' blood sugar measured too high or too low. At age 14, she was diagnosed with type 1 diabetes, an autoimmune disease that destroys insulin-producing cells in the pancreas.
The FDA just issued its first warning to the DIY diabetic community, after one patient suffered an accidental insulin overdose.
But being a sound sleeper, the Seattle-based independent researcher, now 30, feared not waking up. That concerned her most when she would run, after which her glucose dropped overnight. Now, she rarely needs a rousing reminder to alert her to out-of-range blood glucose levels.
That's because Lewis and her husband, Scott Leibrand, a network engineer, developed an artificial pancreas system—an algorithm that calculates adjustments to insulin delivery based on data from the continuous glucose monitor and her insulin pump. When the monitor gives a reading, she no longer needs to press a button. The algorithm tells the pump how much insulin to release while she's sleeping.
"Most of the time, it's preventing the frequent occurrences of high or low blood sugars automatically," Lewis explains.
Like other do-it-yourself device innovations, home-designed artificial pancreas systems are not approved by the Food and Drug Administration, so individual users assume any associated risks. Experts recommend that patients consult their doctor before adopting a new self-monitoring approach and to keep the clinician apprised of their progress.
DIY closed-loop systems can be uniquely challenging, according to the FDA. Patients may not fully comprehend how the devices are intended to work or they may fail to recognize the limitations. The systems have not been evaluated under quality control measures and pose risks of inappropriate dosing from the automated algorithm or potential incompatibility with a patient's other medications, says Stephanie Caccomo, an FDA spokeswoman.
Earlier this month, in fact, the FDA issued its first warning to the DIY diabetic community, which includes thousands of users, after one patient suffered an accidental insulin overdose.
Patients who built their own systems from scratch may be more well-versed in the operations, while those who are implementing unapproved designs created by others are less likely to be familiar with their intricacies, she says.
"Malfunctions or misuse of automated-insulin delivery systems can lead to acute complications of hypo- and hyperglycemia that may result in serious injury or death," Caccomo cautions. "FDA provides independent review of complex systems to assess the safety of these nontransparent devices, so that users do not have to be software/hardware designers to get the medical devices they need."
Only one hybrid closed-loop technology—the MiniMed 670G System from Minneapolis-based Medtronic—has been FDA-approved for type 1 use since September 2016. The term "hybrid" indicates that the system is not a fully automatic closed loop; it still requires minimal input from patients, including the need to enter mealtime carbohydrates, manage insulin dosage recommendations, and periodically calibrate the sensor.
Meanwhile, some tech-savvy people with type 1 diabetes have opted to design their own systems. About one-third of the DIY diabetes loopers are children whose parents have built them a closed system, according to Lewis' website.
Lewis began developing her system in 2014, well before Medtronic's device hit the market. "The choice to wait is not a luxury," she says, noting that "diabetes is inherently dangerous," whether an individual relies on a device to inject insulin or administers it with a syringe.
Hybrid closed-loop insulin delivery improves glucose control while decreasing the risk of low blood sugar in patients of various ages with less than optimally controlled type 1 diabetes, according to a study published in The Lancet last October. The multi-center randomized trial, conducted in the United Kingdom and the United States, spanned 12 weeks and included adults, adolescents, and children aged 6 years and older.
"We have compelling data attesting to the benefits of closed-loop systems," says Daniel Finan, research director at JDRF (formerly the Juvenile Diabetes Research Foundation) in New York, a global organization funding the study.
Medtronic's system costs between $6,000 and $9,000. However, end-user pricing varies based on an individual's health plan. It is covered by most insurers, according to the device manufacturer.
To give users more choice, in 2017 JDRF launched the Open Protocol Automated Insulin Delivery Systems initiative to collaborate with the FDA and experts in the do-it-yourself arena. The organization hopes to "forge a new regulatory paradigm," Finan says.
As diabetes management becomes more user-controlled, there is a need for better coordination. "We've had insulin pumps for a very long time, but having sensors that can detect blood sugars in real time is still a very new phenomenon," says Leslie Lam, interim chief in the division of pediatric endocrinology and diabetes at The Children's Hospital at Montefiore in the Bronx, N.Y.
"There's a lag in the integration of this technology," he adds. Innovators are indeed working to bring new products to market, "but on the consumer side, people want that to be here now instead of a year or two later."
The devices aren't foolproof, and mishaps can occur even with very accurate systems. For this reason, there is some reluctance to advocate for universal use in children with type 1 diabetes. Supervision by a parent, school nurse, and sometimes a coach would be a prudent precaution, Lam says.
People engage in "this work because they are either curious about it themselves or not getting the care they need from the health care system, or both."
Remaining aware of blood sugar levels and having a backup plan are essential. "People still need to know how to give injections the old-school way," he says.
To ensure readings are correct on Medtronic's device, users should check their blood sugar with traditional finger pricking at least five or six times per day—before every meal and whenever directed by the system, notes Elena Toschi, an endocrinologist and director of the Young Adult Clinic at Joslin Diabetes Center, an affiliate of Harvard Medical School.
"There can be pump failure and cross-talking failure," she cautions, urging patients not to stop being vigilant because they are using an automated device. "This is still something that can happen; it doesn't eliminate that."
While do-it-yourself devices help promote autonomy and offer convenience, the lack of clinical trial data makes it difficult for clinicians and patients to assess risks versus benefits, says Lisa Eckenwiler, an associate professor in the departments of philosophy and health administration and policy at George Mason University in Fairfax, Va.
"What are the responsibilities of physicians in that context to advise patients?" she questions. Some clinicians foresee the possibility that "down the road, if things go awry" with disease management, that could place them "in a moral quandary."
Whether it's controlling diabetes, obesity, heart disease or asthma, emerging technologies are having a major influence on individuals' abilities to stay on top of their health, says Camille Nebeker, an assistant professor in the School of Medicine at the University of California, San Diego, and founder and director of its Research Center for Optimal Data Ethics.
People engage in "this work because they are either curious about it themselves or not getting the care they need from the health care system, or both," she says. In "citizen science communities," they may partner in participant-led research while gaining access to scientific and technical expertise. Others "may go it alone in solo self-tracking studies or developing do-it-yourself technologies," which raises concerns about whether they are carefully considering potential risks and weighing them against possible benefits.
Dana Lewis admits that "using do-it-yourself systems might not be for everyone. But the advances made in the do-it-yourself community show what's possible for future commercial developments, and give a lot of hope for improved quality of life for those of us living with type 1 diabetes."
The Grim Reaper Can Now Compost Your Body
Ultra-green Seattle isn't just getting serious about living eco-friendly, but dying that way, too. As of this week, Washington is officially the first state to allow citizens to compost their own dead bodies.
Their bodies, including bones, were converted into clean, odorless soil free of harmful pathogens.
The Lowdown
Keep in mind this doesn't mean dumping your relative in a nearby river. Scientists and organizations have ways to help Mother Nature process the remains. For instance, the late actor Luke Perry reportedly was buried in a mushroom suit. Perry's garment is completely biodegradable and the attached microorganisms help the decomposition process cleanly and efficiently.
A biodegradable burial requires only a fraction of the energy used for cremation and can save a metric ton of CO2. The body decomposes in about a month. Besides a mushroom suit, another option coming down the pike in Washington state is to have your body converted directly into soil in a special facility.
A pilot study last summer by a public benefit corporation called Recompose signed up six terminally ill people who donated their remains for such research. Their bodies, including bones, were converted into clean, odorless soil free of harmful pathogens. That soil—about a cubic yard per person--could then be returned after 30 days to the subjects' families.
Green burials open the door to creative memorials. A tree or garden could be planted with your soil. This method provides a climate-friendly alternative to traditional funerals, circumventing toxic embalming fluid, expensive casket materials and other ecological overhead. The fertile soil could also be given to conservationist organizations.
Next Up
The new legislation in Washington will take effect May 1, 2020. The Pacific Northwest state has one of the highest cremation rates in the nation at 78 percent, only second to Nevada. Rising climate change and increased interest in death management will only speed this discussion to the forefront in other states.
A biodegradable burial requires only a fraction of the energy used for cremation and can save a metric ton of CO2.
It's also worth noting Perry wasn't buried in Washington State, but in Tennessee. It is unknown where exactly he was laid to rest, nor if it was done under a legal precedent or special exception.
According to the Green Burial Council, each state varies on how and where you can bury someone. Home burials are usually legal, but to do so requires establishing an official cemetery area on the property. How someone is buried has even more dynamic legislation. There will be new discussions about how neighbors contend with nearby decomposing bodies, legal limitations to private burial techniques, and other issues never addressed before in modern mainstream America.
Open Questions
It's unclear if green burials will be commonplace for those with less financial means or access. Mushroom suits average a couple thousand dollars, making them more expensive than a low-end casket. There are also the less obvious expenses, including designating the place of burial, and getting proper burial support and guidance. In short, you likely won't go to the local funeral home and be taken care of properly. It is still experimental.
As for "natural organic reduction" (converting human remains to soil in reusable modular vessels), Recompose is still figuring out its pricing for Washington residents, but expects the service to cost more than cremation and less than a conventional burial.
For now, environmentally sustainable death care may be comparable to vegetarianism in the 1970s or solar paneling in the 1980s: A discussion among urbanites and upwardly-mobile financial classes, but not yet an accessible option for the average American. It's not a coincidence that the new Washington law received support in Seattle, one of the top 10 wealthiest cities in America. A similar push may take off in less affluent areas if ecological concerns drive a demand for affordable green burial options.
Until then, your neighborhood mortician still has the death business on lock.