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.