Is Entrepreneurial Geriatrics the Key to Fighting Ageism in US Healthcare?

Ageism in healthcare abounds. Older adults are often overtreated or undertreated for various conditions. The presence of things like fatigue, chronic pain, arthritis, and even cognitive impairment are often accepted as “normal” parts of aging—by physicians and patients alike—despite the fact that many are preventable.

According to a recent opinion piece by NBC News, “we medicalize the natural process of aging, then look down on the patients who come seeking treatment while not adequately preparing the doctors they visit to address their particular needs.” This can lead to increased medication-related complications, use of fewer preventive health services, and declining ownership of one’s own care.

While some might look to the medical establishment for the antidote to ageism, I see innovation and consumerism as surer hopes against these trends. 

Innovation is the cornerstone of what I call entrepreneurial geriatrics. Creative new companies and ventures are putting the power back in the hands of older adults through user-centered design and crowdsourcing to tackle basic problems older adults face - like frequent falling, vision impairment, and loneliness - as they move through their 70s and 80s.

Take these two examples of entrepreneurial geriatric ventures:

• OrCam is a pioneer in the field of artificial vision. Its wearable AI devices can read objects like menus or books and translate that into audio that the wearer can hear.  Their technology can transform the lives of people who are visually impaired like Dr. Claes Wollheim, professor emeritus at the University of Geneva, who lost his central vision as a young adult due to retinitis pigmentosa. “Music and literature are my hobbies, and with OrCam I can recognize CDs and read books,” he says.  These and other technologies – like one’s that allow older adults to see ‘around’ a cataract – will fundamentally change aging and geriatrics forever.

• Everyone’s familiar with Amazon Alexa, the cloud-based voice service powered by artificial intelligence. Beyond just shopping lists and trivia questions, innovators are thinking about new ways that devices like Alexa can combat isolation and loneliness, and can play a key role in keeping people with dementia who live alone safer for longer periods of time.  New programs powered by AARP for older adults who use voice-activated technology show encouraging results, including greater connection and positive emotions.

As these examples show, entrepreneurial geriatrics can bridge the gap between innovation and what older adults actually need to stay vibrant, involved, and connected. 

When I meet founders and CEOs of entrepreneurial geriatrics start-up companies, they often remind me of medical trainees: bright-eyed, empathetic, a little green when it comes to the complexity of the geriatric population, but eager to help improve the lives of older adults. Though I’ve studied geriatrics for nearly 20 years, it’s these innovators who are cultivating an entirely new mindset for aging care.  They know we can do more and better for our aging population.  

And not one minute too soon.  As the number of older adults expands rapidly and the number of board-certified geriatricians is flat at best, I’ll take as many entrepreneurial geriatrics recruits as I can find!

(Dr. Rothman has no financial relationships with any of the organizations or companies mentioned.)

Rural Nursing Homes Closing at an Alarming Rate, Scattering Residents and Disrupting Families

When I was the Chief Medical Officer of one of the nation’s largest nursing home chains, people would often ask me ‘what keeps you up at night?’  My answer was always the same: that rural facilities - those that often depend on a single physician, that provide dozens of jobs for local residents, and that allow families to keep their loved one’s with advanced dementia nearby - that these facilities would be unable to provide care for one reason or another, and would have to close.  These are facilities far afield from urban centers, medical schools, and value-based demonstration projects.  Where physicians were mostly shutting practices down, not starting new ones.  Unfortunately these fears were well founded.

There were over 16,800 skilled nursing facilities (SNF’s) in the US back in 2000, just as I became interested in geriatrics, dementia and long-term care.  Today there are 1,200 fewer SNF’s;  thousands of beds have been taken out of circulation, especially in rural areas.  While some close for safety/quality reasons, the majority shut their doors for financial reasons.

In rural states these closures create undue burdens on pateints with dementia and their families.  An article in the NYT a few weeks back describes the scattering of residents when very rural nursing homes close their doors for good.  In one case a resident was relocated 220 miles away, across state lines, in an effort to find a new ‘bed’ that could care for him, by any measure an unacceptable situation.  The patient traveled seven hours across state lines only to pass away three days later.  That an older adult with advanced dementia should suffer the same fate from a man-made ‘eviction’ as folks do after hurricanes and other natural disasters is shocking to me.

States should provide better rates to SNF’s that care for our most vulnerable elders.  Some state rates are barely enough to keep the lights on.  South Dakota is a case in point, with the lowest rate in the nation.  At $131 per day facilities loose money on every resident.  Think about the last time you paid less than that for just a hotel room, forgetting for a moment the personal care, the medications, the social activity and of course three square meals a day.  Where rural SNF’s are in danger, underwriting or subsidizing partnerships with local entities might help.  Loosening zoning restrictions to allow mixed-use healthcare enterprises can attract local investment, allowing for satellite rehabilitation facilities or clinics.  

Rural communities are already hurting in many ways. SNF closures add insult to injury, increase unemployment, penalize the elders who poured their hearts into those communities over a lifetime, and can inadvertantly rip families apart.  Surely we can do better.

The New Dementia Narrative: Risk Reduction and Prevention Take Center Stage

Everyone knows someone today who’s dealing with dementia, and as a geriatrician that means a lot of questions come my way. Questions about parents who recently had cognitive testing, about the role of assisted living, about prevention—you name it. Dementia is out there in a way it never was before. People have questions, and they need answers.

Dementia is not a normal part of aging

This is where I always start. It’s true; dementia is not a normal part of aging—it is notinevitable. But it is really hard to talk about dementia. In this sense dementia is the cancer and heart disease of yesteryear, often shrouded from public view by secrecy and shame, which is ironic because resources abound. Innovative tools, practices, and technologies are emerging for the field of dementia care. People with dementia are learning to endure and thrive in ways that seemed impossible a generation ago, while communities around the world are understanding how to better support their neighbors and loved ones with dementia through specialized programs and activities.

Dementia doesn’t equal Alzheimer’s disease

Most dementias are not curable, but the risk of developing dementia can be decreased by treating depression, longstanding heavy alcohol use, high cholesterol, and heart disease. Because nearly one-third of dementias have a vascular component, anything that improves the health of one’s arteries and veins throughout her lifetime will lead to less cell death in the brain, lower memory loss, and a decreased risk for dementia.

Your brain likes it when you work out

Of all the strategies known to prevent or delay dementia, exercise may be the most impactful. Researchsuggests vigorous exercise leads to changes in brain chemistry and more and tighter connections between neurons, which may build one’s degree of resistance to dementia. Exercise also helps to improve mood, so depression is another risk factor for dementia that exercise can modify.

Anticholinergics may affect cognition permanently

New research is pointing to another risk, one that geriatricians have warned about for years. According to a recent article by The New York Times, long-term use of anticholinergics, including certain antidepressants and medications for things like incontinence, epilepsy, and Parkinson’s disease may increase one’s risk for dementia over time. We’ve known for a while that anticholinergic medications can cause acute delirium—lots of medications have side effects—but this longer-term link with dementia is new.

The study, well designed and conducted in England, compared prescription patterns in the three to 13 years preceding a diagnosis of dementia in 59,000 people with a matched sample of 225,000 people who did not develop dementia. They calculated the total “anticholinergic burden” individuals were exposed to over time, like the way we think about radiation exposure over time. Those with the highest exposure over time—people with daily use of a strong anticholinergic medication for over three years—showed a nearly 50 percent increased odds of developing dementia.

These findings serve as a wake-up call to all physicians to pay closer attention to the anticholinergic burden as their patients live longer, and for patients to look for less anticholinergic alternatives if long-term use is recommended.

Learn more about dementia

As you continue to learn from a growing body of research and collaborative communities, remember that knowledge is power. Armed with greater wisdom and empathy, we can overcome the narrative around dementia and equip the current generation of people with dementia, their loved ones, and their caregivers with the resources, support, and courage to thrive. 

Better L.A.T.E. Than Never? A New Type of Dementia is Described...

(This blog originally appeared in LinkedIN as an article, 5/16/19)

A new type of dementia is in town.  It’s called LATE.  It has many similarities with Alzheimer’s Disease, in fact it overlaps with Alzheimer’s in many cases.  Last month an international consortium of dementia researchers published a summary of what we know about LATE thus far.  They also agreed on the name, they proposed standard protocols to use going forward so that research and drug development could happen faster, and they alerted the public and medical community that this new category of dementia is real and needs our attention.

LATE is an acronym that stands for:

•      Limbic-predominant

•      Age-related

•      TDP-43

•      Encephalopathy

While the name is a tongue-twister, it does point to several of the ways in which LATE is either similar or distinct from Alzheimer’s Disease.  

Both diseases affect the hippocampus, but in LATE the damage is a bit more spread out within the limbic system, that part of the brain that controls memory, personality, and behavior.  Thus limbic-predominant.

Although both Alzheimer’s and LATE are age-related, their age at onset is distinct.  The earliest signs of Alzheimer’s tend to appear in the early to mid 70’s. Early symptoms of LATE appear in the mid 80’s instead, so nearly a decade later.

The hallmark plaques of Alzheimer’s Disease are mainly composed of amyloid-beta.  There are plaque-like deposits in the brain tissue of LATE patients as well, but the main protein is called TDP-43.  I find the distinction encouraging because so far, all the clinical trials that targeted amyloid-beta have failed.  We desperately need new targets for drug-development and now we have one.  It’s also possible that one of the reasons those clinical trials failed is because there were LATE patients mixed into the study population, so scientists are trying to figure out how important that may or may not have been.

And lastly, both are slow, progressive diseases that affect memory and one’s ability to care for oneself, so in that sense they are both encephalopathies.

Most of what is known about LATE comes from studies of people who died and donated their bodies to science.  The findings that pathologists discovered under the microscope were then correlated back with the patient’s symptoms and the natural history of their dementia before they died.  From this work it seems that Alzheimer’s and LATE can overlap.  When one happens without the other, both of the diseases appear to progress slowly, but when they occur together the symptoms are more severe and the dementia progresses faster. 

I can think of many patients who had what looked like Alzheimer’s but their diseases progressed at very different rates. Some developed symptoms and then passed away within 5-7 years.  Others were (or are) still alive over 10-15 years later.  Is it possible that some had the 2 dementia’s combined while others only had one or the other?  Unfortunately, there’s no way to tease these two dementias’ apart in the clinic: no lab or screening tests exist to do that just yet. 

Clearly, we are still in the early innings when it comes to LATE.  The work done by the LATE consortium is a significant step forward and will jumpstart several new avenues of research.  Given the vast impact that dementia is having across our society, that is welcome news to this geriatrician’s ears.

Knocking on a Patient’s Front Door at the Intersection of Dementia and Firearm-Safety

As a physician I view the recent public discourse on gun violence and firearm safety as timely and essential.  Apparently I am not alone, as evidenced by the American College of Physicians position paper^⁠ on firearm injuries released last year, and then by the visceral Twitter hashtag #ThisIsOurLane ^⁠that went viral after a tweet by the National Rifle Association admonished “self-important anti-gun doctors to stay in their lane.”  It seems that tens of thousands of my valiant colleagues who face the acute- and post-acute effects of gun violence every day were not quite ready to cede their moral and intellectual authority as healers and leaders to the NRA.  Maybe that’s because many of them are military service members or gun owners themselves.

But as a geriatrician, looking upstream into the community - where many of my physician and non-physician colleagues are knocking on the doors of older adults every day to provide medical care, home health, rehabilitation, hospice and other services -  it is the coincident growth of gun ownership and dementia that has me thinking about the safety of our patients, their caregivers and our workforce alike.  

This intersection of dementia and firearms in our communities is truly astounding.  It is estimated that over 50% of persons with dementia now live in a household with a firearm^⁠, a concerning statistic given that nearly 20% of persons with dementia will experience violent or aggressive behavior over the course of their disease, and the total number of persons with dementia is expected to rise by over 10 million by 2050.  While there is little data on the estimated number of firearms per patient, 1 in 5 guns in the home have typically been gifted or inherited, making it likely that anecdotal stories of five, ten, even 20 guns per household represent the norm more than the exception for older adults.  As former military service members, law enforcement officers or sportsmen and women, many of our older patients’ interest in, and experience with firearms is lifelong.  Ample time to collect, store, or have been gifted multiple firearms, now possibly in various states of accessibility, readiness or even neglect or disrepair.  

Why does this matter for the small army of home-based healthcare providers that knock on the front doors of older adults with dementia each week?  For the geriatricians, nurses and nurse practitioners, home health and hospice aides, social workers, rehab specialists, case managers, DME delivery drivers, and volunteers from community agencies like Meals on Wheels?  

Unfortunately, stories^⁠ of caregivers injured or fatally wounded at home by their demented loved ones are no longer rare, and neither are cases of mailmen or neighbors confronted with a pistol-waving older adult on the porch.  Many a home health RN have conducted assessments with a patient’s firearm in plain sight, and they will tell you it can be more or less threatening depending on the patient and the situation.  As for management, agencies are struggling with policies that balance the safety of their workforce with the preferences and freedoms of their patients, which has led in some cases to a reduction of services^⁠ or an outright refusal to provide care in homes where guns are unsecured.  Though no policy can guarantee safety 100% of the time, home care agencies and home-based practices have a responsibility to align their policies and procedures with the safety of their employees.  Unfortunately access to care may suffer if the perceived threat is too great.  After all, if services can be curtailed due to unsafe hoarding or blatant fire-hazards, then limiting services to homes with unsecured or loaded or brandished firearms is not a stretch.

Like all complex geriatric issues, our approach to the now-intertwined issues of firearm safety and access to home-based care for older adults with dementia will require a multidisciplinary and multifactorial approach.  Many of the better-known strategies are listed below, along with a few ideas that may help as well:

• Data: Robust data and research has made cars, medications, and tobacco safer - without taking any of those items away from people^⁠ - and we should allow and support that same level of inquiry for firearms. It is time to let our discussions on firearm safety be guided by high quality data, not by special interest group-think and advocacy alone. 

• Awareness: Efforts by the Alzheimer’s Association^⁠, Dementia Friendly America^⁠ and others have alerted the public to the high prevalence of older adults with dementia in all aspects of life, in order to raise bystander awareness of this disease.  Similar efforts with the law enforcement community and social service volunteers, highlighting the prevalence of gun ownership and it’s overlap with dementia, will increase their sensitivity to the issue and better prepare them for what they may find when entering the home of someone with dementia, especially if that person is alone.

• Screening by Physicians: Some physicians are hesitant to inquire about firearms because they are unsure what to do with that information.  I would suggest that physicians put themselves in the shoes of the home-health nurse they may end up sending to that patient’s home.  He or she will ring that patient’s doorbell for the very first time, and knowing what to expect is always better.  While there is no standard evidence-based tool for screening, common sense approaches include:
• Asking about any guns in the home during a cognitive work up for suspected memory loss
• Adding guns to the list of common safety concerns - gas stoves, cars, power tools, heavy machinery - when counseling patients with dementia and their families. 

• Gun ‘contracts’ or ‘trusts’^⁠ between patients, their family members and care providers: Adapted from sample agreements about unsafe driving^⁠, these allow for the issue to be talked about openly (often the hardest part), recognizes the patient’s desire to continue to use or handle their firearms, honors the patient as the responsible party for both the firearm and for the safety of those around them, lays out specific conditions under which it may be time to put the firearm in the care of a less cognitively impaired person, and occasionally sets a date certain when that will happen.  

• Red-Flag Laws: Eleven states^⁠ have already passed or are working on laws that more clearly delineate - for family, for local law-enforcement and for the courts - when and how firearms can or should be urgently removed from the home for reasons of mental defect or alarming behavior.  Ironically the issue is sometimes less about the person with dementia who may be licenced and well versed in firearm safety, and more about the caregiver or family member who accepts the firearm for safe-keeping.  That person may have no license, no training, and little know-how, which can lead to adverse outcomes for them personally, legally and financially.

• Community partnerships: Gun owners with dementia are unique but they are first-and-foremost members of our communities, our neighbors, our friends. Local community engagement can help: gun shop and firing range owners, local law enforcement, veterans groups, gun clubs and currently enlisted service men and women are all potential allies when it comes to the intersection of firearms and dementia.  They are often strong proponents of the 2^nd Amendment, but they also prize safety and security for the elders in their communities and the healthcare workers who transition in and out of those homes every day.  Home visitation by a fellow enthusiast or veteran with unloaded weaponry, trips to the range to handle guns in a safe environment, help from law-enforcement for family members who realize there are far more guns in the home then their loved-one with dementia can maintain, secure or even catalogue.  A variety of opportunities exist to engage with and learn from the experienced gun users in the community; their support should be sought out and welcomed.

Firearm safety is a pressing concern for persons with dementia and the caregivers and healthcare workers who support them at home.  But just as we strive to ensure that an opera lover with dementia is not cut off from the theatre when their memory fails, we must not indiscriminately deny a gun-enthusiast his or her enjoyment as a side-effect of impaired cognition.  Rather we should help families and caregivers talk openly about firearms, let high-quality data guide our policies, engage our community partners for help and expertise, and do our best to ensure that the courageous caregivers and providers who ring doorbells across town each day have confidence that a safe environment awaits as they step acros that next threshold to do some good.

Dementia Diaries: A Journey With Dementia: 18 Months

An honest reflection on how the memories of caring for a loved one with dementia are intertwined with the memories of an entire life, and how that persists even after they are gone.  Thank you Cassandra for continuing to share your journey with us!

Dementia Diaries: A Journey With Dementia: 18 Months: 18 months. In some ways it seems like an eternity, and in other ways it seems like just yesterday that I said my final good-bye to my mom...

Bridging The Digital Divide: Safe, intuitive, non-threatening digital design for older adults as the ticket to health information and care delivery in the future.

As a geriatrician I’ve always worried about access for my patients: to comprehensive primary care, essentials like transportation and nutritious meals, high quality palliative and end of life care.  But over time my attention has turned to another access issue, a digital one.  As digital literacy fast becomes a pre-requisite for health information and even for service delivery, health systems and innovators will need to wrap their arms around a digital divide that often exists between younger and older adults.  

My journey into the digital divide began three years ago when a friend and start-up entrepreneur here in Louisville asked for input on a business idea: let’s build a safe, effective digital platform for the oldest old, those in their 70’s, 80’s and 90’s, whether in assisted living or at home, give them the ability to customize their entertainment experience based on their preferences – as opposed to whatever’s on Cable each night – and allow their loved ones to connect with them digitally in a way that neither side would feel was obtrusive or intimidating.  The geriatrician in me liked the idea right away.  Besides, what could go wrong?

Unfortunately, beta testing quickly revealed a big problem: the digital environment that we find so intuitive isn’t as quickly or easily adopted by our oldest users.  The digital paradigm that most of us now take for granted - the way things are presented, what things are called, how we bounce hither and yon through the multi-layered universe on our screens - these were never designed with our oldest users in mind.  For most of us the ‘BACK’ and ‘HOME’ buttons make perfect sense, but not everyone shares that intuition.  We apparently needed to dig deeper into the hearts and minds of the older technology user: their needs, their expectations, their strengths, their frustrations and fears.  So much for a quick-to-market technology!

It might not be surprising to hear that older adults have a habit of blaming themselves when it comes to digital frustration or difficulty, saying things like ‘I’m no good at technology’ or ‘that computer stuff is just for kids’.  But for us this did not ring true at all.  From early television sets to the smartphone, thousands of new technologies have come on line each decade for the past 70 years, across all aspects of life.  At home, at work, on the road.  Anyone who has lived from the 1940’s to the 2010’s is a paradigm of technology adoption.  The gold standard.  For my friend and I, their inherent ability to adopt technology was not - and could never be - the real problem.  So we listened, we iterated, we listened again, and again and again...  Ultimately the root of the problem became clear: the difficulties our oldest users were having come from the design of the technology itself, both physically and digitally.  

So we changed the look and feel on screen, limited the number of steps it takes to reach the information people want.  We favored clear wording over potentially confusing icons.  Colors are less jarring and contrast improved.  And we designed a new remote.  We added sensory feedback to the buttons.  We consulted with experts in arthritis and neurology so that the physical and visual tools were accommodating to anyone with impairments in those areas.  (And if anyone thinks this is only for older adults or persons with various diseases, ask yourself, who in this world doesn’t long for a simpler, more intuitive remote at home?!?).  In short, we established a set of design principles that are optimized for the older user, are intuitive and non-threatening, were developed in collaboration with experts and have now been rigorously field tested.  These principles are now the starting point for any conversation with a potential customer, partner or investor.

When I think about incentivizing wellness, and the self-management of chronic diseases that has become more and more common, it seems obvious that our technological and digital innovations must be tailored for the oldest old.  If they are unwilling or unable to adopt the innovations we create, then we will have inadvertently exacerbated a digital divide that we should have been trying to cross or fill all along. 

From the countless hours of trial and error with our focus groups of older users - testing various phones, laptops, pads, touchscreens, remotes, fonts, sizes, colors, you name it - what really stands out in my mind was their enduring optimism and courage.  They tried every tool, every device, every layout, and they never complained.  Even if a particular round was difficult or unintuitive, they remained bullish on the platform and forged ahead.  Here was something both useful and new, so their enthusiasm never waned.  I suspect it was this optimism which kept my friend going many a dark night alone as a start-up entrepreneur.

Flash forward two years, the platform is in people’s homes and being used by both older adults and their families - and sometimes caregivers - alike.  Wouldn’t you know it… as soon as we customized the tools and the interface to them, they adopted it right away.  Instead of falling back on biased assumptions about older users - blaming them for their lack of familiarity; simply offering them more ‘training’ and hope they can catch-up - we based our platform on the strengths of the older user, their experiences and their preferences.  

Isn’t that what we are supposed to do for all our our patients when we offer them treatments and care?  

My entrepreneur friend’s journey is far from over, but as a geriatrician and advocate for the oldest-old I sense that we are on the right track to closing the digital divide among older users and to improve their access to the health care of tomorrow.