Elder Law Prof Blog

Forgetfulness is Not Just for the Old

I always talk with my students about memory loss and what it might signal--but always when we talk about memory loss, or for them, forgetfulness, every one of them has experienced an episode of forgetfulness, whether misplacing their phones or losing their keys.   I was pleased to read a recent editorial in the New York Times by neuroscientist, Daniel J. Levitin.   Everyone Knows Memory Fails as You Age. But  Everyone Is Wrong.

Short-term memory contains the contents of your thoughts right now, including what you intend to do in the next few seconds. It’s doing some mental arithmetic, thinking about what you’ll say next in a conversation or walking to the hall closet with the intention of getting a pair of gloves.

Short-term memory is easily disturbed or disrupted. It depends on your actively paying attention to the items that are in the “next thing to do” file in your mind. You do this by thinking about them, perhaps repeating them over and over again (“I’m going to the closet to get gloves”). But any distraction — a new thought, someone asking you a question, the telephone ringing — can disrupt short-term memory. Our ability to automatically restore the contents of the short-term memory declines slightly with every decade after 30.

Given that everyone has forgetfulness, the author's next point is important:

The relevant difference is not age but rather how we describe these events, the stories we tell ourselves about them. Twenty-year-olds don’t think, “Oh dear, this must be early-onset Alzheimer’s.” They think, “I’ve got a lot on my plate right now” or “I really need to get more than four hours of sleep.” The 70-year-old observes these same events and worries about her brain health. This is not to say that Alzheimer’s- and dementia-related memory impairments are fiction — they are very real — but every lapse of short-term memory doesn’t necessarily indicate a biological disorder.

So, why might we focus on this with elders?  The author suggests elders have more memories to get through-it's going to take more time to remember a specific and generally it may take older folks a bit longer to remember things. 

This is a very interesting article that I plan to reference when I'm discussing issues regarding memory loss and dementia with my students.

PACE Program and Adult Day Care

Kaiser Health News (KHN) recently published a story about a PACE program, Government-Funded Day Care Helps Keep Seniors Out Of Nursing Homes And Hospitals.

The services provided by PACE, a national program primarily funded by Medicaid and Medicare, are intended to keep people 55 and older who need nursing home levels of care at home as long as possible and out of the hospital.

The program is more important than ever as baby boomers age, its proponents say.

“The rapidly growing senior population in California and across the country will put enormous strain on our current fragmented, and often inefficient, health care delivery system,” said Tim Lash, president of Gary and Mary West PACE. California officials consider PACE an integral part of the state’s strategy to upgrade care for aging residents.

Consider the cost-savings to states with PACE programs, as well as the number of folks, typically dual eligibles, who participate. According to the story,

The National PACE Association said data it collected for 2019 shows seniors enrolled in PACE cost states 13% less on average than the cost of caring for them through other Medicaid-funded services, including nursing homes.

. . .

PACE participants who do not receive government medical benefits can pay out of their own pockets. At Gary and Mary West, the tab ranges from $7,000 to $10,000 a month, depending on the level of care.

Nationally, 50,000 enrollees participate in PACE programs at over 260 centers in 31 states. In California, PACE serves nearly 9,000 vulnerable seniors at 47 locations.

PACE provides the same services as under Medicare and Medicaid, and use of team from various disciplines to provide care. Patients often have chronic conditions and  almost 2/3 of them have some level of cognitive difficulty.

Check it out.

 PACE enrollees commonly have conditions such as vascular disease, diabetes, congestive heart failure, depression and bipolar disorder.

More on Caregiving

A couple of recent articles are worth mentioning.  First, the New York Times ran an article about millennial caregivers, For Millennials Making Their Way, a Detour: To Caregiving.

For baby boomers who fretted about every aspect of their children’s lives, here’s another worry for the list: Their children may become their caregivers while also handling the pressures of young adulthood. One-fourth of the 40 million caregivers in the United States are millennials, ranging from their early 20s to late 30s, according to a report by the AARP Public Policy Institute.

These caregivers are members of what an expert on aging ,.. calls the panini generation: “They are feeling the heat, and they are feeling pressed.”

As the article notes, for millennial caregivers the timing comes at the beginning of their careers, rather than in their late middle age or older, as it has for previous generations. Think about the financial implications for the millennials, not only for the present, but also for their futures. A look at some statistics helps crystallize the issues.

A change in family structure is one reason for the large number of millennial caregivers.... “Boomers had their kids at a later stage of their life than their own parents, and they had fewer children to provide the care....”

Also, many boomers are divorced and single, leaving caregiving to their children rather than to a spouse....And those younger caregivers are more likely than older caregivers to be men, according to a SCAN-financed poll by The Associated Press-NORC Center for Public Affairs Research.

Younger caregivers spend an average of 21 hours a week on those tasks, usually for a parent, grandparent or close friend, according to AARP. And more than half perform such difficult jobs as helping someone bathe or use the toilet and preparing injections.

Next, frequent contributor and reader of this blog, Professor Naomi Cahn, provided me with a link to a caregiving article she recently had published. Thanksgiving for Caregiving provides some data about caregivers and those who need care, and then offers some tips for caregivers on work/life/caregiving balance.

Are Physicians and Attorneys Speaking the Same Language When Talking About Competency or Capacity?

One of the most frequent search phrases that brings internet users to our Elder Law Prof Blog is the phrase "competency vs. capacity."  The search leads readers to a post from 2006 that summarizes an article written by two experienced psychiatrists, Phillip J. Resnick and Renee Sorrentino, originally published in December 2005 in Psychiatric Times. The article -- and often our blog post -- is frequently quoted or cited for the following passage:

This [clinical] consultation request reflects a common misconception regarding the issue of competence.  Competence is a legal state, not a medical one.  Competence refers to the degree of mental soundness necessary to make decisions about a specific issue or to carry out a specific act.  All adults are presume to be competent unless adjudicated otherwise by a court.  Incompetence is defined by one's functional deficits (e.g., due to mental illness, mental retardation or other mental condition), which are judged to be sufficiently great that the person cannot meet the demands of a specific decision-making situation, weighed in light of its potential consequences. . . . Only a court can make a determination of incompetence.

 

In contrast, psychiatric consultants can and should opine about a patient's capacity to make an informed decision or judgment.  Capacity is defined as an individual's ability to make an informed decision.   Any licensed physician may make a determination about capacity.  Forensic psychiatrists, however, are especially suited to assess a person's mental status and its potential for interfering with specific areas of functioning.  An individual who lacks capacity to make an informed decision or give consent may need to be referred for a competency hearing or need to have a guardian appointed.  The psychiatric consultation results in an opinion regarding whether such actions are indicated. 

 

Moreover, competence is issue specific.  Some physicians who misconstrue competence to be a global, black or white issue will ask psychiatric consultants for a broad consultation on whether the patient is competent or not.  The response of the psychiatric consultant should be, "Competent for what?"    

 

An additional challenge, however, is that in the years since that particular article was written, there has been a strong movement in law to dispense almost entirely with the "incompetent" label for legal purposes, especially when we are talking about the individual's ability to make informed decisions, whether for health care or other matters in life.  The incompetent label is viewed as unnecessarily and inappropriately stigmatizing.  The legal trend is to focus on capacity evaluations.  This trend also rejects global incompetency labels, and is often tied to an evaluation of function for specific tasks.  Perhaps the two professions are moving in the same direction when concerns are identified about cognition, focusing on an evaluation of the individual's "capacity for what?"   

Earlier this week, I was part of a fascinating discussion with a panel that included Dr. Samuel Hammerman, who wears many professional hats including that of a practicing pulmonary and critical care physician; Dr. Charles J. Duffy, a professor of neurology with deep professional interest in dementia; and Rabbi Ron Muroff, who set exactly the right tone for compassionate discussion.  Okay -- we all admitted our introduction sounded like the start of a joke about walking into a bar.....

We took up this topic of "capacity" or "competence" in response to two cases drawn from real life, where patients with serious physical health concerns also have compromised cognition and are rejecting admission or treatment at a hospital. Our audience, members of the Cardozo Society (lawyers) and the Maimonides Society (health care professionals) of the Jewish Federation of Greater Harrisburg, were very engaged and of enormous help in the discussion.  I walked out of the room energized and ready to get back to a long-planned article updating this topic (as soon as I find that elusive commodity, time!).  

Blood Test for Alzheimer's?

Professor Naomi Cahn, the incoming chair of the AALS section on Aging & Law, sent me this recent article,  The Hunt for a Blood Test for Alzheimer’s Disease wherein "[r]esearchers hope circulating biomarkers will enable earlier detection and better monitoring of the neurodegenerative disorder—and perhaps help usher in new treatments." The article identifies updates in research and summarizes some blood tests being tried to help with diagnosis.

A number of questions and issues remain to be resolved before many of the biomarkers found in the blood are ready for use in trials, much less for clinical care... [with] [o]ne issue that researchers must account for is individual variability....  “People are so different [and] there’s a lot of things we still don’t know how to even control for in terms of statistical analyses.” Age and APOE4 carrier status, for example, can change the levels of some AD biomarkers independently of whether an individual has the disease.

The story also notes the existence of technical challenges and challenges of consistency. So far scientists haven't found the definitive diagnosis, nor the cure, but they are surely working hard to do so.

 

Stories About Alzheimer's

Two recent stories about Alzheimer's caught my eye, and I wanted to share them with you here.  The day after Thanksgiving, the Today Show ran a story, Caregiver for Alzheimer's Patient Shares Family's Struggles. The caregiver wife tells the story of their lives and the financial impact when her husband, a lawyer, was diagnosed at age 61 with early onset Alzheimer's. The summary describes the story, "Millions of Americans selflessly care for loved ones with Alzheimer’s disease and one family is opening up about their struggles on TODAY. Many people are calling for a nationwide program for caregivers, reports special anchor Maria Shriver." Senator Amy Klobuchar appears in the story, as her dad has Alzheimer's. The story mentions pending bills in Congress, including the Alzheimer's Caregivers Support Act. The link to the 3:22 minute video is available here.

The second story, an opinion piece in the New York Times, The Unending Indignities of Alzheimer’s   aired December 1, 2020. It highlights the obstacles family members face in trying to find the necessary care for the individual with Alzheimer's....

But while his family, and his physician, agree on the need for more advanced care, his health insurers do not. Medicare does not generally cover long-term nursing home care. Medicaid does, but only when it deems those services “medically necessary” — and that determination is made by insurance agents, not by the patient’s doctors. The state of New Jersey, where my parents live, recently switched to a managed care system for its elderly Medicaid recipients. Instead of paying directly for the care that this patient population needs, the state pays a fixed per-person amount to a string of private companies, who in turn manage the needs of patients like my father. On paper, these companies cover the full range of required offerings: nursing homes, assisted-living facilities and a suite of in-home support services. In practice, they do what most insurance companies seem to do: obfuscate and evade and force you to beg.

The author writes how the family is piecing together the care the best they can.  She writes "[t]he real problem is not my father’s level of functionality; it’s the lack of available Medicaid beds and the absurdly high cost of any meaningful alternative. For example, there’s a lovely assisted-living facility just two miles from my parents’ apartment. But it costs $8,000 a month, on average, and does not accept my father’s insurance."

BTW, know someone who is a caregiver? Even though National Caregivers' Month (November) is behind us, thank a caregiver.

Caregiver Respite with Shelter Pets!

I always love reading about the cool things our elder law grads are doing.  Last week Stephanie Edwards, Elder Law LL.M. grad and adjunct professor in our MJ Aging, Law & Policy program, held a wonderful event for caregivers, those in their care and shelter pets. The Caregivers Holiday Paws Pause included staffed respite caregiving for those who needed care while their caregivers got a little break to visit with exhibits, interact with shelter pets seeking homes and having a meal. The event also included a presentation for caregivers on strategies for caregivers during the holidays.  One shelter pet even found a new home.  Stephanie Edwards ROCKS!!

 

Two Recent Articles About Dementia

Two articles in the news are worth mentioning, in case you missed them. First, the New York Times ran an article, Why Didn't She Get Alzheimer's? The Answer Could Hold a Key to Fighting the Disease. "Researchers have found a woman with a rare genetic mutation that has protected her from dementia even though her brain has developed major neurological features of the disease."  The article highlights a recently published study "in the journal Nature Medicine, [in which] researchers say the woman, whose name they withheld to protect her privacy, has another mutation that has protected her from dementia even though her brain has developed a major neurological feature of Alzheimer’s disease."  The article reminds us to not expect instant therapies-this is going to take time, but even so, it's still very positive news. "[T]his case comes at a time when the Alzheimer’s field is craving new approaches after billions of dollars have been spent on developing and testing treatments and some 200 drug trials have failed. It has been more than 15 years since the last treatment for dementia was approved, and the few drugs available do not work very well for very long."

Thanks to Professor Naomi Cahn for alerting me to this article.

The second article I wanted to mention also appeared recently in the New York Times. The Loneliness of Frontotemporal Dementiaoffers this description of the disease:

Frontotemporal dementia attacks people in their fifth or sixth decade, just as retirement comes within reach. Doctors believe the disease affects 60,000 people in the United States alone. Neurons in the front and side of the brain wilt, and along with them, images of peacefully growing old fade. Judgment and complex planning yields to chaotic disorganization. Inhibitions give way to impulsivity and hypersexuality, so that longtime faithful partners look to affairs and excessive pornography. Empathy turns to apathy. Obsessions and compulsions erupt. Language can become laborious; the meaning of words and objects can be lost, and fluent speech can dissolve into fragments of sentences with nonsensical grammar. Jarringly, memory remains largely untouched. Since brain areas that dictate personality are often the first to suffer, most people end up on a therapist’s couch long before finding their way to a neurologist.

The article examines the importance of support groups and how some individuals present with the disease.  There are some trials underway; "'[b]ecause frontotemporal dementia is often familial, we can get people into a trial before they have symptoms,' [according to one expert] 'By sequencing genes from a blood sample, we know which family members are probably going to get the disease. If we can slow down progression in those people, it’s virtually a cure.'”

 

DC Ethics Opinion on Impaired Lawyers

The D.C. Bar recently released a new ethics opinion addressing the obligations when an attorney becomes impaired.  Ethics Opinion 377  Duties When a Lawyer is Impaired starts by explaining

The District of Columbia Legal Ethics Committee has examined the ethical duties of partners; other managerial or supervisory lawyers and subordinate lawyers; and non-lawyer employees to take appropriate measures when they reasonably believe another lawyer in the same law firm or government agency is suffering from a significant impairment that poses a risk to clients.¹ A related question involves the duties owed to clients and the profession when an impaired lawyer leaves a law firm or government agency, particularly when the lawyer may continue to practice law, regardless of whether clients are, or may be, terminating their relationship with the firm in order to remain clients of the departing lawyer.

This Opinion deals only with mental impairment, which may be a chronic or temporary condition arising out of or related to age, substance abuse, a physical or mental health condition or other circumstance affecting the lawyer. This Opinion supplements the guidance contained in Legal Ethics Opinion 246, with a specific focus on the issue of impaired lawyers, whose conduct may or may not trigger mandatory reporting obligations under the Rules, as discussed herein. This Opinion also relies, in part, upon ABA Committee on Ethics and Professional Responsibility Formal Opinion 03-429 (2003).

The impairment of a lawyer may fluctuate over time, regardless of its cause. However, if a lawyer’s periods of impairment are on-going or have a likelihood of recurrence, then partners, or other lawyers with managerial or supervisory authority may have to conclude that the lawyer’s ability to represent clients is materially impaired.

A range of ethics rules are implicated, including those setting forth the duties owed by lawyers to clients and the profession, and those addressing issues of supervising lawyers and non-lawyer employees. At the outset, and as discussed within this opinion, the Committee recognizes that there are tensions between ethical duties that arise under the D.C. Rules of Professional Conduct (the “Rules”) and requirements or prohibitions that may exist under the substantive law, specifically with respect to employee privacy and other rights. Lawyers and law firms must be cognizant of the legal landscape in which these difficult issues occur.

Mental impairment may lead to an inability to competently represent a client as required by Rule 1.1, to complete tasks in a diligent and zealous manner as required by Rule 1.3, and to communicate with clients about their representation as required by Rule 1.4.

Rule 5.1 requires partners or other lawyers with managerial or supervisory authority to make reasonable efforts to ensure that all lawyers and those under their supervision comply with the applicable Rules and to ensure that their law firm or government agency has in effect measures giving reasonable assurance that all lawyers in the firm or agency conform to the Rules. These provisions require managerial or supervisory lawyers who reasonably believe or know that a lawyer is impaired to closely supervise the conduct of the impaired lawyer because of the risk of violations of the Rules and resulting harm to clients. Rule 5.2 may also apply to subordinate lawyers if they know of and ratify the conduct of the impaired lawyer.

Rule 8.3 requires a lawyer, regardless of managerial or supervisory authority, to report an impaired lawyer to the appropriate professional authorities including, but not limited to, the District of Columbia Office of Disciplinary Counsel,if the impaired lawyer has committed a violation of the Rules that raises a substantial question as to that lawyer’s honesty, trustworthiness or fitness to practice law, unless such disclosure would be prohibited under the duty of confidentiality owed to clients under Rule 1.6 or other law.... Further, if the firm or government agency removes the impaired lawyer from a matter, it may have an obligation under Rule 1.4 to discuss with the client the change in staffing on the matter. The duty to discuss removal of government lawyers from a matter may be different because of government policies or regulations.

If the impaired lawyer resigns, is removed or otherwise leaves the law firm, the firm may have additional disclosure obligations under Rule 1.4 to clients who are considering whether to remain with the firm or to transfer their representation to the departing lawyer. However, the firm should be cautious to limit any disclosures to necessary information permissible to disclose under applicable law. The obligation to report misconduct under Rule 8.3 is not eliminated if the impaired lawyer leaves the firm.

Beyond the ethical obligations embodied in the D.C. Rules, a fundamental purpose of identifying and addressing lawyer impairment is to encourage individuals who are suffering from mental impairment to seek and obtain assistance and treatment. This purpose should not be forgotten as lawyers, firms and agencies seek to comply with the ethical mandates discussed herein.  (citations omitted)

The lengthy discussion examines the duties of others who supervise or have some managerial duties, as well as the duty to report.  It concludes that:

In circumstances where a law firm or government agency addresses the issue of an impaired lawyer, there is a crucial balancing between protecting the interests of the clients and properly discharging the law firm or government agency’s obligations to protect the privacy of the lawyer under substantive law. Having appropriate policies and procedures designed to encourage reporting and to address issues of impairment within the law firm or government agency are important steps in ensuring that an impaired lawyer does not violate the Rules and that partners, and managerial and supervisory lawyers properly discharge their duties under the Rules.

Cognitive Impairments and Using Technology

Who among us doesn't have a smart phone or computer, or even a tablet? They are not only ubiquitous, they are integral, and perhaps essential, to our daily lives.  What happens when someone, due to cognitive impairments, is no longer able to use these devices? Kaiser Health News made that the subject of a recent article. The Delicate Issue Of Taking Away A Senior’s Smartphone describes the potential problems

Increasingly, families will encounter similar concerns as older adults become reliant on computers, cellphones and tablets: With cognitive impairment, these devices become difficult to use and, in some cases, problematic.

Computer skills may deteriorate even “before [older adults] misplace keys, forget names or display other more classic signs of early dementia,” Zorowitz wrote recently on a group email list for geriatricians. (He’s based in New York City and senior medical director for Optum Inc., a health services company.)

“Deciding whether to block their access to their bank accounts, stocks and other online resources may present the same ethical dilemmas as taking away their car keys.”

Consider that some folks stay in touch with family and friends through their digital lives. But also consider how scammers can use email to perpetrate a fraud.  The article notes a difficulty in using these devices---a difficulty that did not previously exist--may be an indicator of cognitive issues signaling a need for a comprehensive exam of cognition.  Family can be helpful, but still realize there are issues

[B]eware of appropriating someone’s passwords and using them to check email or online bank or brokerage accounts. “Without consent, it’s a federal crime to use an individual’s password to access their accounts,” said Catherine Seal, an elder-law attorney at Kirtland & Seal in Colorado Springs, Colo. Ideally, consent should be granted in writing.

The article notes that some with dementia lose interest in their devices, but that is not true for everyone-it depends on the type of cognitive impairment.  "More difficult, often, are situations faced by people with frontotemporal dementia (FTD), which affects a person’s judgment, self-awareness and ability to assess risk." The article then profiles the experiences of a noted elder law attorney and friend of mine, whose husband as an FTD diagnosis. She shared the steps she takes to keep her husband safe online.

Read the entire article, especially the last part where personal experiences and tips are shared.  It's an important topic-we all need to think about this and plan for the eventuality in case we need to give up our digital word.

Student Views of Recent Events

I gave my students an assignment to write a blog post on a current event that would be of interest in a class on law and aging.  Here are two that I've received---I thought you might find them interesting.

Post #1

This was supposed to have been a fun family weekend.  My sister-in-law was headed home with a car filled with special treats and presents to celebrate my niece's sweet sixteenth birthday.  The weather was clear and traffic was moving smoothly when the crash occurred.

A ninety year old drove through a stop sign and directly into traffic, causing a multi-car accident.  My sister-in-law had to be cut from her SUV and taken to the trauma center.  I saw her crumpled vehicle first-hand, and it is an absolute wonder she survived.  It is uncertain how long her injuries will significantly impact her life.  Yet, she was the incredibly lucky one.

A young couple and their infant was also struck by the elderly driver's car.  Seeing this family's vehicle was horrific.  I knew the infant was in critical condition at the hospital.  When I saw this car, it looked as if it had been in a compactor; it didn't seem possible for anyone to survive.  Unfortunately, the infant didn't. 

As those involved in the accident struggle to heal and make sense of the tragedy, my heart goes out to the family of the elderly driver.  I have so many questions.  I wonder...did family members recognize the signs that their loved one should no longer be driving?  Did they try to intervene?  Was the driver aware of taking the wheel?  Is he aware now?  How will the driver and family cope with the legal and emotional burden of this accident?  What more can be done to prevent this kind of heartbreak?

https://www.msn.com/en-us/autos/news/multi-car-crash-injuries-four-people-including-an-infant/ar-AAHgwJn

https://seniordriving.aaa.com/resources-family-friends/conversations-about-driving/facts-research/

https://www.agingcare.com/Articles/signs-elder-unsafe-driver-153264.htm

Post #2

Elders in Politics: Perceptions of elders in the 2020 election

Brandy Orth Becker

While the perception and social utility of elders in the United States has always been a topic of discussion, throughout American history, there is a revamping of this discussion with the perspective of another elder ( 65+) as President of the United States of America.

Some common associations with the concept of getting older are memory loss, confusion, social dissonance, etc. All of these factors go to the sharpness of the mind and the ability to understand and process information. These factors are such that if relevant, any leader of a nation could be called into question.

Vice President Joe Biden has been the most clearly targeted in this 2020 election as far as ageism. Despite the fact that many who take the stage at a political debate have a tendency to jumble words, forget details, or misspeak, his errors are being connected automatically to senility and attributed to his age. After an inconsistent statement by Biden in the democratic presidential primary debate in Houston, co-candidate Julian Castro insinuated that Biden was unable to recall the statements that he had just made moments ago (See article). The internet in a quick response, picked up on the insinuations of Mr. Castro. As a result, any actual factual or political statements made by Biden in the debate were overshadowed by a discussion/parody of his age and capacity to lead as an elder.

At 72, Vice President Joe Biden is the oldest among the democratic candidates in the 2020 election. However, with his age comes a very impressive career in the political realm, making him one of the most politically experienced candidates among the bunch. It will be up to the American People in anticipation of, and at the polls, to weigh these facts, and to decide if age will in fact play a factor in disqualifying a presidential candidate.

See article: https://www.dailywire.com/news/51715/elder-abuse-julian-castro-shreds-joe-biden-over-eric-quintanar

Napping More Than Usual? Read This Article.

We have all had that after lunch afternoon slump where we just want a nap. Do you find yourself napping more than usual? There is a new study on changes to sleep-wake cycles and Alzheimer's. For the non-scientist like me, here's the USA Today story:  Napping more? That could be an early symptom of Alzheimer's, new study says.

So wait, don't panic if you are a normal napper.  Here's a segment from the article that explains: "People who develop Alzheimer's tend to sleep more during the day, taking naps or feeling drowsy and dosing off. Sometimes, they wake up during the night; that's called fragmented sleep .... If napping is a part of your routine on a regular basis though, you don't need to worry about taking an afternoon snooze, or mid-morning for that matter."  So it's all about the change in sleep patterns. Whew.

Here's the abstract for the article about the study.

Introduction

Sleep-wake disturbances are a common and early feature in Alzheimer's disease (AD). The impact of early tau pathology in wake-promoting neurons (WPNs) remains unclear.

Methods

We performed stereology in postmortem brains from AD individuals and healthy controls to identify quantitative differences in morphological metrics in WPNs. Progressive supranuclear palsy (PSP) and corticobasal degeneration were included as disease-specific controls.

Results

The three nuclei studied accumulate considerable amounts of tau inclusions and showed a decrease in neurotransmitter-synthetizing neurons in AD, PSP, and corticobasal degeneration. However, substantial neuronal loss was exclusively found in AD.

Discussion

WPNs are extremely vulnerable to AD but not to 4 repeat tauopathies. Considering that WPNs are involved early in AD, such degeneration should be included in the models explaining sleep-wake disturbances in AD and considered when designing a clinical intervention. Sparing of WPNs in PSP, a condition featuring hyperinsomnia, suggest that interventions to suppress the arousal system may benefit patients with PSP.

The full study is available here.

Abuse of SNF Resident On Video

This is just a sad story.  Margaret Collins resident of a SNF, was abused by those tasked with caring for her, according to an article in Huffington Post. Family Sues After Video Shows Nursing Home Workers Taunting Elderly Dementia Patient summarizes the events. Read the story and watch the video. It can be a good jumping off point for a discussion of the importance of resident rights, and litigation and regulations.   Other stories about this are available here,  here , here, and here to include a few. Additional info is available on the blog of the attorneys for the plaintiffs.

Thanks to Professor Dick Kaplan for alerting me to the story.

Caregiver Guilt: "When Will You Be Back?"

Recently I was talking with a friend about the challenges of family caregiving.  She regularly drives many miles to help her mother, who has dementia and is living in another city in her own home.  My friend tried inviting her mother to share the daughter's home.  To put it mildly, that plan did not work. 

Her mother wanted to go back to her own home.  Paid in-home caregivers are often essential components of any such plan, and my friend, as an only child, is the person "on call" whenever one of them cancels at the last minute, as well as visiting regularly to plan meals, do shopping, take her mother on outings and the many loving tasks that tend to fall to family members.   

My friend says that one of the hardest parts of each visit is that her mother always asks, "when will you be back?"  The mother probably isn't intending to put pressure on her daughter, but the pressure is still there, accompanied by the daughter's thought, "Am I doing enough? -- Should I quit my job and move here to be closer to my mother?"  

My sister felt this kind of pressure with our mother, even though she spent almost every evening with her, especially during her last year.  My sister would finish her long day as a primary school administrator and drive 45 minutes in rush hour traffic to be with Mom at dinner and to visit with her while she watched some television, helping her get ready for bed.  And my mother would ask ,"Will I see you tomorrow?"  "Of course,"  was the usual answer.   I know my sister felt guilt, even though she was doing everything imaginable to ease the strain for our mother, as her daily life became complicated by deepening dementia.

My father had slightly different questions for me as the "out-of-state" daughter.   As soon as I arrived from my latest flight on good ol' Southwest Airlines plus a taxi cab drive, he wanted to know,  "When are you leaving?"  I would chuckle and say in mock protest, "I just got here; you can't get rid of me yet." (Of course, with dementia, such questions are often asked not just once, but are repeated multiple times in the course of the same hour.) Eventually I realized that what Dad enjoyed the most was the break in the routine from being trapped at home with dementia, as he would usually ride along with whomever was taking me back to the airport.   He liked rides in general, but he especially appreciated a car trip with a purpose, a purpose he still understood.  

My mother had her own variation for me.  She would be startled when she realized I was leaving at the end of a visit, and she would ask with a worried frown, "Will you be back in time for Christmas?" Whether it was the coldest day in January or the hottest summer day in Phoenix she would ask me about my Christmas plans.  But, that's not  a bad "default" setting for someone with dementia, is it? 

I was always able to say, with sincerity, that yes, I would be back in plenty of time for Christmas. 

Early Diagnosis of Alzheimer's Through Testing

So we don't be on the cusp of a cure for Alzheimer's but recent stories indicate the medical folks might be getting closer to diagnosing it. First, the New York Times reported that we may soon have a blood test that can diagnose it.

A Blood Test for Alzheimer’s?  It’s Coming, Scientists Report

For decades, researchers have sought a blood test for beta amyloid, the protein that is a hallmark of Alzheimer’s disease. Several groups and companies have made progress, and [last]
Thursday, scientists at Washington University in St. Louis reported that they had devised the most sensitive blood test yet.

The test will not be available for clinical use for years, and in any event, amyloid is not a perfect predictor of Alzheimer’s disease: Most symptomless older people with amyloid deposits in their brains will not develop dementia.

But the protein is a significant risk factor, and the new blood test identified patients with amyloid deposits before brain scans did. That will be important to scientists conducting trials of drugs top revent Alzheimer’s. They need to find participants in the earliest stages of the disease.

Since we can't cure it, why do we want to diagnose it?

There is no treatment for Alzheimer’s, and very early diagnosis of any disease can be problematic, since it may not progress. So the first use for this blood test will probably be to screen people for clinical trials of drugs to prevent Alzheimer’s disease, said Dr. Michael Weiner, a neurologist at the University of California, San Francisco.

Ok, a blood test. Pretty easy, not too invasive.  Here's another test on the horizon, according to another article, again in the New York Times: A Brain Scan May Predict Alzheimer’s. Should You Get One? There is "criteria developed by the Alzheimer’s Association and nuclear medicine experts, which call for PET scans only in cases of unexplained or unusual symptoms and unclear diagnoses.... But as evidence mounts that brain damage from Alzheimer’s begins years before people develop symptoms, worried patients and their families may start turning to PET scans to learn if they have this biomarker."  These tests are expensive and "[a]myloid plaques occur commonly in older people’s brains, but not everyone with amyloid will develop dementia, which probably involves multiple factors. Nor does a negative PET scan mean someone won’t develop dementia."

There's a lot of research being done and we all owe a big thank you to the researchers fighting this and all the other diseases out there that threaten us as we age.

Coordinating Treatment, Including Cancer Treatment, for Patients Represented by Guardians or Other Agents

This summer I've been working with a dynamic interdisciplinary team to create a series of online educational modules for guardians and other agents working with adults in Pennsylvania.  Our shorthand name for the 18-month endeavor is the Pennsylvania Guardian Education Project and it is funded by an important Penn State Strategic Initiative Grant.  The work has been daunting at times, but always interesting. 

We have law students researching and writing detailed outlines on Pennsylvania law and national best practice standards for guardians, and then refining those outlines to create scripts under the guidance of Penn State experts in health care, behavioral sciences and online adult education.  We are also filming interview segments featuring  judges, guardians (both lay guardians and certified professionals), social workers, lawyers, advocates and ombudsmen.  Last week we were in the greater Philadelphia area while filming (that's Ben Franklin on the top of City Hall in the background, with filming crew Mimi Miller, Christoper Riley, and Luke Gibson, all Dickinson Law students).

Our hope is that most of the camera work will be completed before Dickinson Law classes resume later this month, but the additional hard work of editing and crafting the interactive units for publication will continue over the fall.  

Our lead research assistant, Mimi Miller (Dickinson Law, '21) has pre-law experience as a Certified Nursing Assistant (CNA) working with older adults, and thus has uniquely practical insights into the challenges for families when coordinating care for impaired loved ones.  Her work with health care members of the grant team, including Dr. Eugene Lengerich, a member of Penn State's Cancer Institute and on the faculty of Penn State's Public Health Sciences program, led to an invitation to "flip" our educational efforts, by making a presentation to health care researchers and clinicians about what guardians are -- and aren't -- permitted to do when making health care decisions for their clients.  The first step in this new collaboration occurred yesterday at Penn State's Cancer Institute Retreat, where Mimi was one of more than 60 presenters and the only law student to present.  Congratulations, Mimi!  

CMS Regs on Pre-Dispute Arbitration Clauses in SNF Contracts

CMS issued their final rule on the use of pre-dispute arbitration clauses in nursing home contracts, CMS Rules Put Patients First Updating Requirements for Arbitration Agreements and New Regulations That Put Patients Over Paperwork.

The rule, published in 84 Fed. Reg. 34718 on July 16, 2019, amends 42 C.F.R. 483.70(n):

483.70 Administration. * * * * * (n) Binding arbitration agreements. If a facility chooses to ask a resident or his or her representative to enter into an agreement for binding arbitration, the facility must comply with all of the requirements in this section. (1) The facility must not require any resident or his or her representative to sign an agreement for binding arbitration as a condition of admission to, or as a requirement to continue to receive care at, the facility and must explicitly inform the resident or his or her representative of his or her right not to sign the agreement as a condition of admission to, or as a requirement to continue to receive care at, the facility. (2) The facility must ensure that: (i) The agreement is explained to the resident and his or her representative in a form and manner that he or she understands, including in a language the resident and his or her representative understands; (ii) The resident or his or her representative acknowledges that he or she understands the agreement;(iii) The agreement provides for the selection of a neutral arbitrator agreed upon by both parties; and (iv) The agreement provides for the selection of a venue that is convenient to both parties. (3) The agreement must explicitly grant the resident or his or her representative the right to rescind the agreement within 30 calendar days of signing it. (4) The agreement must explicitly state that neither the resident nor his or her representative is required to sign an agreement for binding arbitration as a condition of admission to, or as a requirement to continue to receive care at, the facility. (5) The agreement may not contain any language that prohibits or discourages the resident or anyone else from communicating with federal, state, or local officials, including but not limited to, federal and state surveyors, other federal or state health department employees, and representatives of the Office of the State Long-Term Care Ombudsman, in accordance with § 483.10(k). (6) When the facility and a resident resolve a dispute through arbitration, a copy of the signed agreement for binding arbitration and the arbitrator’s final decision must be retained by the facility for 5 years after the resolution of that dispute on and be available for inspection upon request by CMS or its designee. * * *

and is effective September 16, 2019.  The ABA Commission on Law & Aging published an article about the changes: Our New Nursing Home Arbitration Mandate: Educate, Educate, Educate

The recent rule by the Centers for Medicare and Medicaid Advocacy (CMS) permitting nursing homes to enter into pre-dispute, binding agreements with residents or their representatives was deeply disappointing to resident advocacy groups, including the ABA and its Commission on Law and Aging, which advocated strongly for a full ban on nursing home arbitration agreements.

Like many groups, we do not believe that the time of admission to a nursing home is appropriate for informed decision-making about such agreements. Nursing home admission is usually a time of crisis for individuals and their families; the resident is in an impaired condition, the choice of nursing homes may be severely limited, and the resident and family have no idea of the kind of dispute that might be bound by an arbitration clause in the future. There are advantages and disadvantages to arbitration, but it is only after a dispute arises that those pros and cons can be fully weighed, and an informed and voluntary decision can be made.

The author of the article, Charles Sabatino, executive director of the Commission, describes the role of elder law attorneys as "educate residents, their families, and the public more emphatically about these agreements and advise them not to sign these at admission or at any time before a dispute arises."  He notes the good part of the change in the rule: "its mandate that arbitration agreements must not be used as a condition of admission to, or as a requirement for, a resident to continue to receive care at the facility. Moreover, the facility must explicitly inform residents or their representatives of the right to not sign the agreement as a condition of admission, or as a requirement, to continue to receive care at the facility. And the arbitration agreement itself must expressly state the same."

What is important about the new rule? Several things, according to Mr. Sabatino, including the ban on agreeing to arbitration as a condition of admission, a 30 day right of rescission, the requirement that the facility explain the contract in a way that is understandable to the resident or representative, and that the contract can't "contain any language that prohibits or discourages the resident or anyone else from communicating with federal, state, or local officials, including but not limited to federal and state surveyors, other federal or state health department employees, and representatives of the Office of the State Long-Term Care Ombudsman."

So, stay tuned.... let's see how this works.

Applications for Fellows at the Global Brain Health Institute

The Global Brain Health Institute is taking applications for those who are interested in becoming an Atlantic Fellow for Equity in Brain Health at the GBHI.

The Atlantic Fellows for Equity in Brain Health program at GBHI is an opportunity to elevate ...r dedication and contributions to brain health. Applicants should demonstrate a commitment to brain health and health care policy, as well as an ability to implement effective interventions in their home community and to become a regional leader in brain health.

GBHI welcomes applications from people living anywhere in the world and working in a variety of professions. Fellows are typically early and mid-career. At least one-half of fellows will come from outside the US and Ireland, with an initial emphasis on Latin America and the Mediterranean.

Thanks to Sarah Hooper, Executive Director & Adjunct Professor of Law, UCSF/UC Hastings Consortium on Law, Science & Health Policy, Policy Director | Medical-Legal Partnership for Seniors, Senior Atlantic Fellow for Health Equity | Atlantic Institute for sending me the announcement.

Red Flags That Might Signal Dementia

The Washington Post recently ran an important article, ‘Well, that was a weird moment’ and other signs of dementia family members should watch for. With "[a]bout 5.8 million people in the United States are living with Alzheimer’s and dementia, said Heather Snyder, senior director for medical and scientific operations for the Alzheimer’s Association. The number is expected to rise to 14 million by 2050. Approximately 16 million people are caregivers." So it is important to help caregivers understand what might be normal aging and what might be a red flag.

So what should family members look for? What is attributable to normal aging as opposed to cognitive decline associated with dementia?

It is common to misplace keys or eyeglasses or walk into a room with a task in mind and forget what that is. Those are often attributable to multitasking or stress and are considered part of normal aging.

...

Here are some things to look for:

• Notes with reminders about simple tasks.

• When neighbors or friends share concern.

• Bills not paid or overpaid.

Physical appearance — someone who was always put together suddenly wears wrinkled or dirty clothing.

• Weight changes.

• Driving issues: fender benders, parking in the wrong spot.

• Any behavior that is out of the ordinary.

• Picking up an object and using it inappropriately.

• Saying things that are inappropriate — “no filter.”

• Changes in speech, personality.

One expert describes what we are looking for like this: "take notice of what she calls “well, that was a weird moment.” For instance,[the expert] was assessing a woman and did not see any deficits — until the woman asked if she could make a phone call and picked up the television remote." The article stresses the importance of planning and being proactive. Read it, so next time you forget where you left your keys, you won't worry as much.

Two New Articles to Add to Your Reading List

Professor Tara Sklar emailed me to let me know of the publication of two new articles. Her first, Preparing to Age in Place: The Role of Medicaid Waivers in Elder Abuse Prevention appears in 28 Annals of Health Law 195 (2019) and is also available on SSRN.

Here is the abstract

Over the last three decades, there has been a steady movement to increase access to aging in place as the preferred long-term care option across the country. Medicaid has largely led this effort through expansion of state waivers that provide Home and Community-Based Services (HCBS) as an alternative to nursing home care. HCBS include the provision of basic health services, personal care, and assistance with household tasks. At the time of this writing, seven states have explicitly tailored their waivers to support aging in place by offering HCBS solely for older adults, individuals aged 65 and over. However, there is growing concern about aging in place contributing to greater risk for social isolation, and with that increased exposure to elder abuse. Abuse, neglect, and unmet need are highly visible in an institutional setting and can be largely invisible in the home without preventative measures to safeguard against maltreatment. This article examines the seven states with Medicaid HCBS waivers that target older adults, over a 36-year period, starting with the first state in 1982 to 2018. We conducted qualitative analysis with each waiver to explore the presence of safeguards that address risk factors associated with elder abuse. We found three broad categories in caregiver selection, quality assurance, and the complaints process where there are notable variations. Drawing on these findings, we outline features where Medicaid HCBS waivers have the potential to mitigate risk of elder abuse to further support successful aging in place.

The second article, Elderly Gun Ownership and the Wave of State Red Flag Laws: An Unintended Consequence That Could Help Many will be published in the Elder Law Journal. It is currently available on SSRN here.

Here is the abstract

There is rising concern among health professionals and in legal circles to address gun ownership for older adults who display signs of cognitive decline, including dementia. However, elderly gun ownership remains underexamined, partly because incidents of gun violence among the elderly tend to occur in domestic settings and are much less visible than shootings in public areas. In contrast, there is widespread attention to curb mass gun violence through state legislation. Specifically, red flag laws, also known as Extreme Risk Protection Orders, have doubled in 2018 with thirteen states enacting red flag laws and over thirty states having introduced or planning to introduce this legislation. Although red flag laws were not intended to address elderly gun ownership, they uniquely apply where other gun control laws fall short, as red flag laws provide the legal process to temporarily remove access to guns for persons believed to be at an elevated risk of harming themselves or others.

This Article surveys the thirteen states that have enacted red flag laws and analyzes key legislative elements across these states. The state laws have notable variations, including authorized persons who can petition a court for a protection order, standard of proof requirements, and the length of time an order is in effect. These variations have implications for elderly gun owners and their families, particularly in how they relate to the climbing rates of cognitive decline, suicide in late life, and elder abuse. The current wave of red flag laws across the country offer an opportunity to provide greater awareness around elderly gun ownership and prevent crises from becoming tragedies.

I was particularly interested in this second piece, because we recently offered a webinar at Stetson for elder law attorneys on dementia and gun ownership.  Information about the webinar and how to order an audio download are available here.

Congrats Professor Sklar and thanks for letting us know about your articles!