Monday, October 4, 2021

Breakthrough in Alzheimer's Research?

My dear friend and colleague, Professor Feeley, sent me a link to this recent article, Likely cause of Alzheimer’s identified in new study.

Here's a brief bit of info about the study

[S]cientists in Australia have recently discovered an additional factor that may be responsible for the development of this neurodegenerative condition.

Lead study author Dr. John Mamo, Ph.D. — distinguished professor and director of the Curtin Health Innovation Research Institute at Curtin University in Perth, Australia — explained to Medical News Today the conclusion from the new research...

“This study,” he added, “shows that exaggerated abundance in blood of potentially toxic fat-protein complexes can damage microscopic brain blood vessels called capillaries and, thereafter, leak into the brain, causing inflammation and brain cell death.”

The findings were published here. This is the abstract from the article

Several lines of study suggest that peripheral metabolism of amyloid beta (Aß) is associated with risk for Alzheimer disease (AD). In blood, greater than 90% of Aß is complexed as an apolipoprotein, raising the possibility of a lipoprotein-mediated axis for AD risk. In this study, we report that genetic modification of C57BL/6J mice engineered to synthesise human Aß only in liver (hepatocyte-specific human amyloid (HSHA) strain) has marked neurodegeneration concomitant with capillary dysfunction, parenchymal extravasation of lipoprotein-Aß, and neurovascular inflammation. Moreover, the HSHA mice showed impaired performance in the passive avoidance test, suggesting impairment in hippocampal-dependent learning. Transmission electron microscopy shows marked neurovascular disruption in HSHA mice. This study provides causal evidence of a lipoprotein-Aß /capillary axis for onset and progression of a neurodegenerative process.

October 4, 2021 in Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Health Care/Long Term Care, International, Other, Science | Permalink

Friday, September 24, 2021

An Expanding Role for State and Federal Courts in Assessing "Dementia"

In any given week, I often have someone reach out to me, a mere lawyer, asking me for suggestions about how to access assistance for a family member, a friend, or a colleague who is experiencing "mild to moderate dementia."  Of course, part of those requests arise because of my identity as an elder law attorney.  But, still, I think that such requests are a sign of the public's difficulty in identifying trustworthy alternatives.  This week, for example, a call came from a commercial attorney who was startled to realize he might be the closest to a family friend who is struggling with her doctor's strongly-worded recommendation that she should no longer live alone, because of serious difficulties with her memory and balance.  The family was unable or unwilling to help her.   Thus, the commercial attorney was learning about how/whether he could become her surrogate, if needed, for accessing better care and more suitable living arrangements.  Without such a friend, the decision-maker would likely end up being a complete stranger. 

Also this week, however, I was researching a question that led me to put "dementia" into a search box on the Westlaw search engine for recent court decisions.  I expected to see guardianship and conservatorship cases, as that is probably the most obvious reason why lawyers and courts would be involved with dementia.

Instead,  3 of the first 5 case decisions (reported during September 15-September 24) reported on Westlaw involved requests by convicted criminal defendants for relief or modification of sentences due to consequences of dementia.  This means judges are being asked to evaluate the severity of progressive conditions and the impact of the diagnosis on the likelihood the defendant will reoffend if released.  See e.g., Sentencing Guidelines Manual's application notes listing "advanced dementia" as a possible factor in considering whether there are "extraordinary and compelling reasons" for a reduced or modified sentence.  

Two cases decided by federal courts on the same day stood out: 

In U.S. v. Shabazz (USDC for District of Columbia, 9/22/21), compassionate release was denied for a 55 year old man, who had served 46 of his 67 month sentence for heroin and cocaine sales.  The defendant was seeking early release to help provide live-in care for his 80 year old mother who was suffering from worsening dementia, requiring constant care.  The court observed:  

The Court finds that Mr. Shabazz does not meet this high bar [of proof to support compassionate release]. To be clear, the Court fully credits the assertions of Mr. Shabazz, his sister, and [his mother's] doctor with regard to [his mother's] condition. But Mr. Shabazz has not shown that he is the “only available caregiver” for his mother, nor is his situation so rare as to qualify as “extraordinary.” While the Court is deeply sympathetic with the plight of Mr. Shabazz, his mother, and his sister, this case simply does not present the kind of “extraordinary and compelling” circumstances required to reduce a defendant's sentence under [18 U.S.C. ] § 3582(c).

In U.S. v. Wiman (USDC Indiana, 9/22/21), granted release for a man who had served more than 6 years of a 110 month sentence for armed bank robbery, based on evidence of the defendant's diagnosis of Parkinson's related dementia.  The court observed:   

Mr. Wiman is 73 years old.  He has been diagnosed with Parkinson's disease and Parkinson's dementia. Those conditions are progressing, and he has recently been transferred to a federal medical center so that he can reside in a memory disorder unit. Over the past several months, his medical records show that he has ongoing gait problems and has fallen multiple times despite using a walker. BOP medical staff also report that Mr. Wiman requires assistance with activities of daily living. Finally, BOP medical staff report that Mr. Wiman is occasionally confused.  
 
Importantly, Parkinson's disease is a progressive disorder that cannot be cured [citing Mayo Clinic website]. While medications can improve symptoms, those symptoms worsen as the condition progresses over time. That is, there is no reason to believe that Mr. Wiman's condition will improve. To the contrary, it will likely continue to deteriorate. . . . 
 
In the Wiman case, despite the government's argument that the federal prison system can provide a safe place to care for him and that his release "is not viable because he requires specialized care," the Federal District Judge granted the requested relief but stayed the date of release to permit establishment of a safe release plan including supervision, noting that if federal authorities are "unable to develop a viable release plan for Mr. Wiman despite making good-faith efforts to do so, the United State shall immediately notify the Court and explain why a viable release plan cannot be developed."  

September 24, 2021 in Cognitive Impairment, Crimes, Dementia/Alzheimer’s, Federal Cases, Federal Statutes/Regulations | Permalink | Comments (0)

DOJ Elder Justice Initiative Fall Webinars

DOJ's Elder Justice Initiative has announced its fall webinar series.  

Thursday September 30, 2021 2-3 p.m.,  INNOVATIONS IN GUARDIANSHIP: MAXIMIZING AUTONOMY AND ENSURING ACCOUNTABILITY.

Guardianship is one approach to providing support and assistance to adults who need help with decision-making about finances and personal issues. However, as recent high-profile and less visible cases illustrate, guardianship can also infringe on personal rights and can lead to mistreatment of older adults and adults with disabilities.

 

Join us for a webinar to discuss current trends and challenges in state guardianship systems, policies and practice. Using real-life guardianship scenarios, the webinar will explore ways to maximize autonomy and ensure accountability throughout the guardianship process. Presenters will discuss less restrictive alternatives to guardianship as well as ways to improve adjudication and post-appointment oversight of guardians.

To register, click here

Thursday October 21, 2021 2-3 p.m., IMPLEMENTING ELDER ABUSE RESTRAINING ORDERS

With the growing criminalization of elder abuse, greater attention has focused on elder abuse restraining orders, which are commonly used in the domestic violence context. Approximately sixteen states have an elder abuse restraining order statute, including California, with an additional three states having a financial exploitation only restraining order statute. Learn how one county-level adult protective services program in California implemented their restraining order statute. Overcoming some initial challenges, the presenters will share their lessons learned.

To register, click here.

Thursday November 18, 2-3 p.m., IDENTIFYING AND PROSECUTING POWER OF ATTORNEY ABUSE

Financial powers of attorney are legal tools commonly used to plan for the possibility that an adult may need help with financial decision-making in the future, but they can be used to steal money and property. Presenters will discuss common scenarios and recent prosecutions.

To register, click here.

September 24, 2021 in Consumer Information, Crimes, Current Affairs, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship, Federal Statutes/Regulations, Programs/CLEs, State Statutes/Regulations | Permalink | Comments (0)

Wednesday, September 15, 2021

The Challenges of Federal Oversight for Medications or Food Supplements Targeting an Aging Public

I'm finding myself spending a lot of time reading and thinking about the Food and Drug Administration (FDA) and Federal Trade Commission (FTC).  Of course, public concerns about the efficacy of Covid-10 vaccines dominate the attention of many of us working on health-related legal concerns that affect older adults.  For example, I've been researching questions about the potential for FDA approved antibody tests for Covid-19 vaccines.  

But also intriguing is a report that a slow-moving FTC suit against developers and marketers of the dietary supplement known as Prevagen may be getting closer to a possible trial date in the Southern District of New York.  A dismissal of the 2017 law suit filed jointly by the FTC and the New York Attorney General was overturned in 2019 by the Second Circuit in a summary order, concluding that the "FTC and New York have made plausible allegations that Defendants] marketing campaign for Prevagen contained deceptive representations."  For more on this and other Prevagen-related suits, see the Washington Post's recent article Does the Supplement Prevagen Improve Memory? A Court Case is Asking that Question.

Plus, there are significant questions arising in the wake of the FDA's June 7, 2021  announcement of its "accelerated" approval of aducanumab for treatment of Alzheimer's Disease.  See e.g., Recently Approved Alzheimer Drug Raises Questions that May Never Be Answered (JAMA Network, July 21, 2021).

As noted in Dr. Jason Karlawish's important new book, The Problem of Alzheimer's: How Science, Culture, and Politics Turned a Rare Disease into a Crisis and What We Can Do About It, the number of Alzheimer's patients in the U.S. will rise to an estimated 13.8 million by 2025.  The caregiver market alone is searching desperately for answers, and it can be very hard to make individual decisions about risks and benefits without trustworthy information.  This is a tough time for what we might call a pandemic crisis about "trust."   

September 15, 2021 in Cognitive Impairment, Consumer Information, Dementia/Alzheimer’s, Federal Cases, Federal Statutes/Regulations, Health Care/Long Term Care, Science | Permalink | Comments (0)

Tuesday, September 14, 2021

Highlights from Touro Conference on Aging, Health, Equity, and the Law (9.13.21)

Touro College's Jacob Fuschberg Law Center hosted a fabulous half-day, interdisciplinary program on Aging, Health, Equity and the Law.  Among the highlights:

  • A perfect kickoff with opening remarks on the theme of the conference from Syracuse Law Professor Nina Kohn, who outlined the civil rights of older persons, reminding us of existing laws and the potential for legal reforms;
  •  A unique "property law" perspective on the importance of careful planning about ownership or rights of use, in order to maximize the safety and goals of the older person, provided by Professor Lior Strahilevitz from University of Chicago Law School;  
  • Several sessions formed the heart of the conference by taking on enormously difficult topics arising in the context of Covid-19 about access to health care, including what I found to be a fascinating perspective from Professor Barbara Pfeffer Billauer  from her recent work in Israel. She started with an interesting introduction of three specific pandemic responses she's identified in her research. She then focused on how "Policy Pariah-itizing" has had a negative effect on health care for older adults, with examples from Israel, Italy, and China.  I was also deeply impressed by the candid presentations of several direct care providers, including nursing care professionals Esperanza Sanchez and Nelda Godfrey, about the ethical issues and practical pressures they are experiencing; 
  • Illinois Law Professor Dick Kaplan offered  timely perspectives on incorporating cultural sensitivity in Elder Law Courses.  His slides had great context, drawing in part from an article he published about ten years ago at 40 Stetson Law Review 15;
  • Real world examples about tough end-of-life decisions involving family members and/or formally appointed surrogates, with Deirdre Lock and Tristan Sullivan-Wilson from the Weinberg Center for Elder Justice leading breakout groups for discussions.

I know I'm failing to mention other great sessions (there were simultaneous tracks and I was playing a bit of leap-frog).  But the good news is we can keep our eyes out for the Touro Law Review compilation of the articles from this conference, scheduled for Spring 2022 publication.  I know it was a big lift to pull off the conference in the middle of the fall semester.  Thank you!

September 14, 2021 in Advance Directives/End-of-Life, Books, Cognitive Impairment, Consumer Information, Crimes, Current Affairs, Dementia/Alzheimer’s, Discrimination, Elder Abuse/Guardianship/Conservatorship, Ethical Issues, Health Care/Long Term Care, Housing, International, Property Management, Science | Permalink

Sunday, September 12, 2021

Front Page on the Sunday NY Times: "Phony Diagnoses" Used in Drugging at Nursing Homes

In a front-page Sunday article, Phony Diagnoses Hide High Rates of Drugging at Nursing Homes, The New York Times adds a subtle but important focus in providing its latest reports of a well known issue, the use of chemical restraints, including antipsychotic medications, to control behavior for people in long-term care settings.  The patients have been getting "new" diagnoses of schizophrenia, thus attempting to justify the sedation associated with major antipsychotic medications, such as Haldol, despite the fact that such medications are contraindicated for dementia patients. From the article:

In 2005, the Food and Drug Administration required manufacturers to put a label on the drugs warning that they increased the risk of death for patients with dementia.

 

Seven years later, with antipsychotics still widely used, nursing homes were required to report to Medicare how many residents were getting the drugs. That data is posted online and becomes part of a facility’s “quality of resident care” score, one of three major categories that contribute to a home’s star rating.

 

The only catch: Antipsychotic prescriptions for residents with any of three uncommon conditions — schizophrenia, Tourette’s syndrome and Huntington’s disease — would not be included in a facility’s public tally. The theory was that since the drugs were approved to treat patients with those conditions, nursing homes shouldn’t be penalized.

 

The loophole was opened. Since 2012, the share of residents classified as having schizophrenia has gone up to 11 percent from less than 7 percent, records show.

 

The diagnoses rose even as nursing homes reported a decline in behaviors associated with the disorder. The number of residents experiencing delusions, for example, fell to 4 percent from 6 percent.

As the news article reports, the challenges of caring for individuals with dementia are enormous, and lack of adequate staffing is certainly a reason why families and facilities use and misuse drugs to control -- restrain -- them.  But, at the same time, as I have written about on this Blog several times (see here, for example), the problem is not "just" about staffing ratios.    

Special thanks to Laurel Terry, Dickinson Law Professor Emerita, for ensuring I saw this latest article.  

September 12, 2021 in Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship, Federal Statutes/Regulations, Health Care/Long Term Care, Science | Permalink | Comments (0)

Thursday, September 9, 2021

Colorado City Makes Public Apology & Pays $3 Million to Settle Lawsuit Over Violent Takedown and Arrest of Older Woman

In May of 2021, we linked to emerging information about a June 2020 arrest of a 73 year-old woman with dementia in Loveland Colorado.  

The family of the older woman, Karen Garner, filed a civil suit.  On September 8, 2021, the City of Loveland issued a press release announcing a $3 million dollar settlement and expressing an apology to the family:  

“The settlement with Karen Garner will help bring some closure to an unfortunate event in our community but does not upend the work we have left to do. We extend a deep and heartfelt apology to Karen Garner and her family for what they have endured as a result of this arrest,” said Loveland City Manager Steve Adams. “We know we did not act in a manner that upholds the values, integrity, and policies of the City and police department, and we are taking the necessary steps to make sure these actions are never repeated.” 

***

“There is no excuse, under any circumstances, for what happened to Ms. Garner. We have agreed on steps we need to take to begin building back trust. While these actions won’t change what Ms. Garner experienced, they will serve to improve this police department and hopefully restore faith that the LPD exists to serve those who live in and visit Loveland,” Chief Bob Ticer stated.

Criminal charges are still pending against the officers involved in the violent takedown,  in her arrest, and for the detention of the injured woman who was then left without medical care in a holding cell while officers sat comfortably in a booking room, reviewing their own bodycam videos, appearing to laugh over the sound of her breaking arm.  For more, read here and here. 

There is a lot of work still ahead for so many police and detention units.  

September 9, 2021 in Cognitive Impairment, Consumer Information, Crimes, Current Affairs, Dementia/Alzheimer’s, Discrimination, Elder Abuse/Guardianship/Conservatorship, State Cases, State Statutes/Regulations | Permalink | Comments (0)

Monday, September 6, 2021

Massachusetts Supreme Court Holds Conservator Entitled to Absolute Immunity for Conduct "Authorized or Approved" by Probate Court

In a case of first impression for the high court in Massachusetts and decided in August 2021, the Supreme Court concluded that where a conservator acts on behalf of an elderly woman "pursuant to judicial approval as a quasi-judicial officer," the conservator is entitled to "absolute immunity for conduct that is authorized or approved by the probate court."  

In Hornibrook v. Richard,  the plaintiff is one of two sons of a woman in her "mid-eighties and suffering from progressive dementia due to Alzheimer's Disease." He was appointed by a Massachusetts probate court to serve as guardian for his mother, but when his allegedly neglectful brother objected to his appointment as a permanent guardian for their mother, the probate court appointed a Massachusetts licensed attorney, selected from a list of qualified attorneys, to serve separately as the conservator.  The dual appointments occurred in the context of a serious, ongoing dispute between the woman's two sons.  It seems clear the court appointed the nonfamily-member conservator in an effort to diffuse the family dynamics.

Instead, attempts by the conservator to evict or negotiate with the resident-son from the mother's home appear to have dragged on for months, and the mother was never able to return to home.  The guardian-son eventually sued the conservator, alleging (1) breach of fiduciary duty, (2) malpractice, (3) conversion, and (4) fraud.   

The Supreme Court used Massachusetts' "functional analysis" for determining whether an individual performs a quasi-judicial function that entitles the officer to "absolute immunity."  The court compared the case to prior Massachusetts immunity decisions involving a court-appointed psychiatrist, court clerks, guardian ad litem in family court, and a personal representative in an estate, concluding that where individuals are appointed to perform "essential judicial functions" they are entitled to absolute immunity. 

Facts that appeared to be key to this ruling included the conservator's formal request for court authority to take specific, disputed actions, such as renovating the house and placing it on the market for sale. 

The court issued a de-facto caution, however, that immunity may not be granted for all actions taken by a conservator:

"Because the plaintiff here does not allege that the defendant was acting outside the express authorization of the probate court, we do not address the extent to which the conservator may be liable personally when acting within his or her statutory authority but without express authorization or approval of the probate court."

One can anticipate more motions and probate hearings being sought by guardians -- at least the cautious guardians -- as a result of this ruling.  But one can also expect that family members resentful of slow-moving protective-probate proceedings will not be reassured by this ruling.  

September 6, 2021 in Cognitive Impairment, Current Affairs, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship, Ethical Issues, Medicaid, State Cases | Permalink | Comments (0)

Friday, September 3, 2021

What Happens When You Are "Widowed," Not by the Death of Your Spouse, But By Alzheimer's?

New York Times Magazine has an Ethicist Columnist and recently the topic was "My Stepdad Has Alzheimer's. Can My Mom Date Someone Else?"

The adult child who raises the topic explains that her mother was a long-standing, full-time caregiver for her husband, who's early-onset diagnosis of Alzheimer's had deepened to the point that he was transferred to a more appropriate, assisted-living setting.  Lonely and missing companionship, the mother began dating another man.  On the one hand, the ethicist was tackling the concern about the appropriateness of the couple "dating."  The deeper concern, however, appeared to be that the man the mother was dating might not be a good choice, and potentially even an unsafe choice, and the family disapproved.

On the question of "dating" while still married to a spouse with dementia, the ethicist, Kwame Anthony Appiah (who teaches philosophy at NYU), makes the startling, but apt, observation about de facto widowhood:  

Making sure that a spouse is cared for is one commitment that marriage entails and, having served as a full-time caregiver, your mother has clearly done so, at real personal sacrifice. But we should not want our spouses to abjure the companionship of others once we are no longer available to them. Indeed, nobody in your family has the right to expect this of her. The painful truth is that her status is ethically equivalent to that of a widow.

The comments posted after the article in response to the ethicist's discussion are also interesting, including what sprang to my mind, a recommendation of  a sensitively-made movie directed by Sarah Polley, based on the author Alice Monroe's novel with the same title, Away from Her. 

 

September 3, 2021 in Books, Cognitive Impairment, Current Affairs, Dementia/Alzheimer’s, Ethical Issues | Permalink | Comments (0)

Thursday, September 2, 2021

Star Trek Legend Conservatorship Battle

I'm a fan of Star Trek. I'm not a hard core Trekkie, but I enjoy all the variations of Star Trek, whether movie or TV.  I was saddened to read about a conservatorship battle surrounding the trailblazing actor Nichelle Nichols, our beloved Lieutenant Uhura. Inside the heartbreaking conservatorship battle of a 'Star Trek' legend explains that "[a] three-way fight over Nichols’ fate involves her only child, Kyle Johnson, who is also her conservator; her former manager Gilbert Bell; and a concerned friend, Angelique Fawcette."  Here's a brief summary. "In 2018, Johnson filed a petition for conservatorship, arguing that his mother’s dementia made her susceptible to exploitation. In 2019, Bell filed a lawsuit against Johnson, alleging attempts to remove him from Nichols’ guest home, where he has lived since 2010, and 'aggressive and combative behavior.'"  Here's how the neighbor came into the suit. "Fawcette, a producer and actress who met Nichols in 2012, entered the legal fight opposing Johnson’s conservatorship petition. Fawcette pushed for visitation rights to spend time with her friend, and she argued for Nichols to stay in Woodland Hills — a scenario that has looked increasingly improbable."

The article goes in depth into her life and career and how the current litigation came to be, including declining health, a power of attorney, transfers of assets, a conversation about marriage and more.  Ms. Nichols is not the first famous person to be in the center of a conservatorship fight, nor will she be the last. 

Thanks to Julie Kitzmiller for sending me the link to the story.

September 2, 2021 in Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship, Film, Health Care/Long Term Care, State Cases | Permalink | Comments (1)

Monday, August 30, 2021

Hidden Costs of Caregiving

Vox recently published The staggering, exhausting, invisible costs of caring for America’s elderly. "As someone ages, their health appears to gradually deteriorate in a way that doesn’t seem alarming. Most of the time, though, they’re inching toward a cliff — and when they fall off, they find themselves on another health cliff, and another, and another. With each cliff, it gets more difficult for a family member to catch them."  Lack of long term care insurance and a lack of understanding of what Medicare covers leaves many unprepared when the need for caregiving arises.  Nursing homes remain expensive and concerns arising as a result of COVID remain relevant today, the article notes. The impact on caregivers is highlighted in the article. Here are some excerpts:

[M]ost of this care work — both paid and unpaid — remains invisible. According to the most recent data from the AARP, an estimated 41.8 million people, or 16.8 percent of the population, currently provides care for an adult over 50. That’s up from 34.2 million (14.3 percent) in 2015.

Of those caregivers, 28 percent have stopped saving, 23 percent have taken on more debt, 22 percent have used up their personal short-term savings, and 11 percent reported being unable to cover basic needs, including food. The average age of someone providing care for an adult is 49, but 23 percent are millennials and 6 percent are Gen Z. Sixty-one percent are women, and 40 percent provide that care within their own homes, up from 34 percent in 2015.

A lot of these caregivers are really, really struggling. What’s required of them is more complex and time-consuming than just 10 years ago, as caregivers deal with overlapping diagnoses related to physical health, mental health, and memory loss as the elderly live longer. The work is much more than just clearing out the guest room or setting another place at the dinner table.

I find the article thoughtful and thought-provoking. It's worth reading and I'll use it in my class.  Consider this excerpt:

t’s only recently that we’ve settled on the understanding that care for elders is natural, moral, and ideal, even when the people providing this care are suffering or lacking the skills to provide the quality of care the recipient requires, or both. Crucially, by locating responsibility for care squarely on the family unit, it also continues to limit or excuse greater society — which is to say, the government — from the responsibility of providing care to the most vulnerable members of society. Our belief that the family is always the best and preferred care provider makes it much harder to advocate for the sort of larger, taxpayer-funded systems that would make all care, regardless of whether it’s provided by a family member, far easier.

There are other consequences to this naturalization of family responsibility. When labor is continually framed as something done out of love or instinct, it loses its connotation as labor and, by extension, its value. When women (and white middle-class women in particular) began moving into the workforce en masse in the second half of the 20th century, they didn’t quit their domestic work. They just did two jobs, one layered on top of the other; they would put in a full day in a traditional workplace for pay, then went home and kept working, unpaid.

Many women could only juggle these two separate jobs with the help of other women, both paid and unpaid. Poor working women had been doing this for some time, relying on “kith and kin” for child care in particular. Some middle-class women increasingly began to do the same, relying on friends but mostly family, while some began paying other women to do the work. This domestic labor, whether in the form of child-rearing, laundering, cleaning, or cooking, was essential, but because it had been so thoroughly normalized as unpaid work, it was also easy to normalize incredibly low wages for those who do it, even if that person had no relation to the family.

The article discusses the stresses of, and costs from caregiving and concludes with a sense of urgency regarding a looming crisis, if action isn't taken

Right now, several experts told me, the public alarm around the state of elder care is about where it was with child care 10, 15 years ago. We didn’t act on the alarm bells when it came to child care, and now the system is in a pandemic-accelerated crisis, with rippling effects across the economy. The question, then, is whether we want to wait the 10, 15 years for that implosion, right as even more Gen X-ers, millennials, and older Gen Z-ers age into caregiving roles and, shortly thereafter, need their own care. Or do we want to address the problem now, before it risks collapsing us, and our families, entirely.

Thanks to Morris Klein for sending me the link to this article.

August 30, 2021 in Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Health Care/Long Term Care, Medicaid, Medicare | Permalink | Comments (1)

Wednesday, July 21, 2021

Is Shared Decision-Making A Better Route for Effective Communication?

Elizabeth Moran, a relatively new staff attorney for the ABA's Commission on Law and Aging, has an interesting article in the latest issue of Bifocal, Vol. 42, Issue 6 (July-August 2021).  Moran outlines several key recommendations made by the National Guardianship Network during their May 2021 national Summit.  She points to two of the 22 recommendations that bear on "effective communication" for persons with disabilities, especially when involved in court proceedings that may affect any determination of "legal capacity."  

Recommendation 1.2 advocates for courts and state authorities "must ensure that all judicial proceedings" that can impact a determination of an adult's legal capacity must provide "meaningful due process" which includes respect for the individual's "preferred communication accommodations."  

Recommendation 2.4 provides that federal and state authorities "should recognize that supported decision-making can be a reasonable accommodation under the Americans with Disabilities act of 1990, as amended, in supporting an individual in making their own decisions and retaining their right to do so."

Moran acknowledges there is weak understanding within some courts for how supported decision-making will work, even as she advocates strongly for its use.  She writes:

While there is growing awareness of “supported decision-making” (SDM), particularly as an alternative to guardianship, SDM does not have a universally accepted legal definition. It is, however, becoming a more commonly understood concept of integrated supports which honors an individual’s integrity of choice with the underlying principle that, with enough appropriate supports and services, nearly every individual has the capacity to make decisions. When people use SDM as a communication accommodation, they use family members, friends, professionals, and others they trust and who know them well to help them understand the situations and choices they face, but with the ultimate choice left to the adult. This eliminates a substitute decision-maker and maximizes autonomy for the individual who may need communication supports for speaking, reading, writing, or understanding in order to meaningfully participate. The need for this kind of support necessarily includes and can provide for meaningful participation in court services, programs and activities.

For more on this important topic, read Moran's full piece, "Something to Talk About: Supported Decision Making and Access to Justice for All."

July 21, 2021 in Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship, Ethical Issues, Federal Statutes/Regulations, State Statutes/Regulations | Permalink | Comments (0)

Monday, July 19, 2021

UVA Law Professor Naomi Cahn: Why Conservatorships Like the One Controlling Britney Spears Can Lead to Abuse

 Prolific writer Naomi Cahn, who in 2020 moved from George Washington to University of Virginia School of Law as a distinguished professor and director of UVA's Family Law Center, has a new commentary on the potential impact of the Britney Spears' litigation challenging her California-based conservatorship.  Professor Cahn observes at the outset:

Spears’ case is unusual: Conservatorships are typically not imposed on someone who doesn’t have severe cognitive impairments, and Spears has toured the world, released four albums and earned US$131 million, all while deemed legally unfit to manage her finances or her own body.

Despite the unique circumstances of Ms. Spears' circumstances, her case demonstrates the lack of national data tracking such "protective" proceedings.  Professor Cahn writes:

Broad powers and “anemic” oversight make conservatorships subject to multiple forms of abuse, ranging from the imposition of unnecessary restrictions on the individual to financial mismanagement. Nothing can be done if no one finds out about the abuse.

 

A 2010 U.S. government report identified hundreds of allegations of physical abuse, neglect and financial impropriety by conservators. Most of them related to financial exploitation, and that, in turn, often meant that the victim’s family was affected, losing not just expected inheritances but also contact with the person subject to the conservatorship.

 

A 2017 New Yorker article on abusive guardians highlighted the case of April Parks, who was sentenced to up to 40 years in prison for financial conduct related to numerous conservatorships she handled. She was also ordered to pay more than half a million dollars to her victims.

 

But beyond these anecdotes, no one even knows the magnitude of the problem. That’s because conservatorships are subject to state law, and each state handles the imposition of them as well as data collection differently. And a 2018 Senate report found that most states are unable to report accurate data on conservatorships.

Professor Cahn sees Britney Spears' case as generating a national outrage that was missing from earlier anecdotal indications of problems for older adults trapped in "protective" proceedings.  She concludes: 

Spears may soon find herself free of her conservatorship. Regardless, her situation has already put a spotlight on the potential for abuse – and it may lead to a better system for those who genuinely need the assistance.

July 19, 2021 in Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Discrimination, Elder Abuse/Guardianship/Conservatorship, Ethical Issues | Permalink | Comments (0)

Loss of Empathy and How Such Changes Affect Caregiving Relationships (and Can Inadvertently Affect Law-Related Matters)

During the pandemic,  as our caregiving relationships have probably become more intense because of the physical restrictions on travel, socializing, eating out, etc., I've had time to observe and think more about "empathy."   For several years, even before Covid-19 changed social patterns, I've heard friends and family members who are serving as caregivers talk about frustrations they are experiencing with "their" older persons, not just because of increasing physical needs, but because of changes in personality.  While a loved one's confusion and memory problems are typically associated with Alzheimer's Disease and other neurocognitive impairments, I also notice how often the caregivers can "forgive" the problems associated with those domains, but are enormously impacted if their loved one no longer is "nice" or no longer seems to be interested in, or cares about others' moods or needs.  

Loss of empathy is a documented phenomenon in aging generally, and in neurocognitive impairments specifically.  At the same time, loss of empathy seems to be rather weakly studied, or perhaps, more accurately, rather weakly understood.  

Brief excerpts from a review of some recent literature on loss of empathy:

  • "Early loss of empathy is one of the core symptoms of behavioral-variant frontotemporal dementia (bvFTD), which is often diagnosed when people are in their 50s.  In contrast, empathy remains relatively intact in people with Alzheimer's disease (AD).  People with bvFTD are often unaware of the impact of their behavior on others, causing strain in close relationships.  The [2016] study conducted by NeuRA researcher Dr Muireann Irish, found that both the ability to understand other people's emotions (cognitive empathy) and to share in other people's feelings (affective empathy) were decreased in people with bvFTD.  People diagnosed with Alzheimer's however, retained the capacity for affective empathy." (from a 2016 report by NeuRA, an independent, not-for-profit research institute based in Sydney, Australia).  
  • "The question of how aging impacts empathy has important implications for public health because reduced empathy has been associated with greater loneliness, depression, and poorer relationship satisfaction. Socioemotional selectivity theory ... highlights the importance of emotional meaning for older adults, and this typically takes the form of spending time with close others. Thus, if older adults experience decreases in empathy, this could have a significant, negative impact on their well-being." (from Preliminary Conclusions: State of the Research on Empathy in Aging, in Janelle Beadle and Christine E. de la Vega's article on "Impact of Aging on Empathy: Review of Psychological and Neural Mechanisms" published 2019 in Front Psychiatry).

How do changes in empathy impact decision-making, including decisions about pre-death gifts and post-death bequests?  If differences in the ability to empathize with others are associated with a disease process, should that mean that any corresponding change in gifting could (or should) be legally impacted?  Is loss of empathy a component of reduced legal competency or legal capacity?  

July 19, 2021 in Cognitive Impairment, Current Affairs, Dementia/Alzheimer’s, Estates and Trusts, Ethical Issues, Health Care/Long Term Care | Permalink | Comments (0)

Monday, July 12, 2021

California Bar Seeking Input on Proposed Formal Opinion on Clients with Diminished Capacity

The California Bar has asked for input on Proposed Formal Opinion Interim No. 13-0002 (Client with Diminished Capacity).  According to the announcement

Proposed Formal Opinion Interim No. 13‑0002 considers: What are the ethical obligations of a lawyer for a client with diminished capacity?

The opinion interprets rules 1.0.1(e), 1.1, 1.2, 1.4, 1.6, 1.7, and 8.4.1 of the Rules of Professional Conduct of the State Bar of California; Business and Professions Code section 6068(e).

The opinion digest states: A lawyer for a client with diminished capacity should attempt, insofar as reasonably possible, to preserve a normal attorney client relationship with the client, that is, a relationship in which the client makes those decisions normally reserved to the client. The lawyer’s ethical obligations to such a client do not change, but the client’s diminished capacity may require the lawyer to change how the lawyer goes about fulfilling them. In particular, the duties of competence, communication, loyalty, and nondiscrimination may require additional measures to ensure that the client’s decision-making authority is preserved and respected. In representing such a client, a lawyer must sometimes make difficult judgments relating to the client’s capacity. Provided that such judgments are informed and disinterested, they should not lead to professional discipline. In some situations, the client’s lack of capacity may require that the lawyer decline to effectuate the client’s expressed wishes. When the lawyer reasonably believes that the client’s diminished capacity exposes the client to harm, the lawyer may seek the client’s informed consent to take protective measures. If the client cannot or does not give informed consent, the lawyer may be unable to protect the client against harm. A lawyer representing a competent client who may later become incapacitated may propose to the client that the client give advanced consent to protective disclosure in the event that such incapacity occurs. If appropriately limited and informed, such a consent is ethically proper.

At its meeting on October 23, 2020, and in accordance with their procedures, the State Bar Standing Committee on Professional Responsibility and Conduct tentatively approved Proposed Formal Opinion Interim No. 13-0002 for a 90-day public comment distribution. Subsequently, at its meeting on June 11, 2021, COPRAC revised the opinion in response to public comment and approved Proposed Formal Opinion Interim No. 13-0002 for an additional 60-day public comment distribution.

The text of the proposed  opinion is available here.

Republished July 19 to correct error in title.

Seems like a good time to remind everyone of the fabulous resource from the ABA Commission on Law and Aging, Assessment of Older Adults with Diminished Capacities: A Handbook for Lawyers, 2nd Edition. It's a must have for every attorney's library.

July 12, 2021 in Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Ethical Issues, State Statutes/Regulations | Permalink | Comments (0)

Thursday, July 1, 2021

Caregivers & Home Care Funding

You may recall that the President proposed an increase in home care funding. But, Biden's pledge to boost home caregiver funding excluded from infrastructure deal.

Because the federal government does not require states to provide these benefits for all those who qualify, nearly 820,000 older or disabled Americans were on state waitlists for Medicaid’s home- and community-based services in 2018, according to a Kaiser Family Foundation study published last year. Many rely on family members for their most basic needs, including bathing, getting dressed and taking medication. Without outside help, their family members often struggle to balance caregiving with work and face the enormous challenge of keeping their loved ones safe.

Amid the growing need, President Joe Biden vowed to eliminate these waiting lists during his campaign and originally proposed to inject $400 billion into these programs through the massive infrastructure bill currently under debate in Congress. Republicans, however, have blasted the effort to include “human infrastructure” in the bill, and Democratic leaders excluded the funding from the deal that the White House struck on Thursday with a bipartisan group of senators. Biden has pledged to pursue money for caregiving in a separate, far larger bill that could potentially pass with Democratic votes alone, but that is far from guaranteed.

The need is great and the wait is long, according to the article.

Without greater support, the number of vulnerable Americans who can’t access paid care at home will continue to rise, experts and advocates say, given the aging population, pandemic-fueled fears of nursing homes, and a growing shortage of workers, deterred by Medicaid’s low pay rates and tough working conditions. That means more families could be left scrambling to patch together care for their loved ones at home, not knowing if their number on the waiting list will come up or if they will be able to receive care when it does.

Add into the mix worker shortages and we are facing a critical situation.  Although not included in the infrastructure bill,   Democrats on Thursday introduced a bill "to expand eligibility and access to Medicaid home- and community-based services, helping states reduce waitlists and increasing pay and benefits for home health workers. Democrats can pass certain spending bills without Republican votes, but would need support from every member of their razor-thin Senate majority, and 10 Democratic senators have yet to sign on to the new home care bill."

Stay tuned.

July 1, 2021 in Consumer Information, Current Affairs, Dementia/Alzheimer’s, Federal Statutes/Regulations, Health Care/Long Term Care, Medicare | Permalink | Comments (0)

Wednesday, June 30, 2021

Early Recommendation: Read "The Problem of Alzheimer's" by Dr. Jason Karlawish


The Problem of Alzheimer's A number of years ago, I had an email correspondence going with Dr. Jason Karlawish, Professor of Medicine, Medical Ethics and Health Policy, and Neurology at the University of Pennsylvania.  He was writing and speaking in intelligent, understandable ways about complex issues in degenerative neurocognitive disorders.  

My sister brought him back to my attention, as she had just heard Brené Brown's podcast interview with Dr. Karlawish.  Dr. Karlawish recently published an important book on The Problem of Alzheimer's.  I immediately ordered the book and I'm still reading, but I can tell this is -- and should be -- an important resource for anyone trying to understand or explain the Alzheimer's or other progressive impairments in cognition.  Frankly, that means all of us.  He is taking on an essential question:  "What's a good life when you're losing your ability to determine that life for yourself?"  The subtitle of the book helps explain the scope:  "How science, culture, and politics turned a rare disease into a crisis and what we can do about it."

I'm sure I'll write more hear about this book as I plunge ever deeper into the clear prose, organized in logical chunks, where I'm finding "gold" embedded on every page.  It is not a soothing read, but that is exactly why it is so important.

June 30, 2021 in Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship, Ethical Issues, Health Care/Long Term Care, Statistics | Permalink | Comments (0)

Tuesday, June 22, 2021

One Family's Caregiving Experience

Richard Kaplan, elite elder law professor and friend, sent me the link to this recent article from the Wall Street JournalOne Family’s Lessons Learned From a Decade of Caregiving.

As do many families, the spouse committed to caring for his spouse with dementia. 

The family learned much along their decade-long caregiving journey, about setting up trusts, getting help in the home and respecting each other’s decisions. They think about a few things they would have done differently. And they found that caregiving, while relentless and heartbreaking at times, can also be rewarding.

Being a family caregiver is one of the most difficult jobs and one that nearly everyone will have at some point. An estimated 42 million people in the U.S. provide unpaid care to those 50 and older, a 14% increase since 2015, according to the Caregiving in the U.S. 2020 report by the National Alliance for Caregiving and AARP.

Each family is different, and what works for one family may not work for another, says  ... [the] chief executive of the National Alliance for Caregiving. Family members don’t always agree about when to call in hospice or sell a house, but it’s important to be supportive, she says. “The hardest thing to say is, ‘It’s not the choice I would make, but I want to honor their choice.’ ”

The story is heartfelt, and compelling.  The caregiver spouse offers this advice as to what changes he would have made.

He would have gone to an elder-law attorney earlier to make sure their assets were in a trust that would better protect them from having to be spent down to qualify, if needed, for Medicaid’s coverage of long-term care costs.

And he would have bought a single-story patio home within walking distance of their church and shopping center when [his spouse] suggested it 20 years ago. “It was what [she] wanted to do, but I wanted the yard. My own little domain. I wish I would have,” he says. “Here I am now with this big house, by myself. I’ll probably reach a point where I can’t take care of it.”

Knowing how hard it is to provide hands-on care, and not wanting to be a burden, he recently told his daughters, “Just put me in a nice place. You don’t have to do what I did for mom. You don’t have to take me into your house. I don’t want that.”

I'm assigning this reading to my students.  Thanks Professor Kaplan!

June 22, 2021 in Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Estates and Trusts, Federal Statutes/Regulations, Health Care/Long Term Care, Housing, Medicaid | Permalink | Comments (0)

Thursday, June 10, 2021

What Standards Should be Used for Seeking Consent for Alzheimer's Treatment, including Aduhelm?

The CEO for Biogen, the publicly-traded biotechnology company that developed Aduhelm, issued a statement about the company's policies and plans for the new drug in conjunction with the FDA's announcement of its accelerated approval of the drug for patients with Alzheimer's Disease.  He writes in part:  

The approval of ADUHELM represents a crucial inflection point in our collective battle against Alzheimer’s disease. By addressing a defining pathology of the disease, this novel therapy has the potential to help fundamentally change the way patients are diagnosed and treated. 

 

I have hoped for years that we would reach a moment like this. We all know the staggering numbers: there have been at least 100 drug development programs discontinued since 2003—the last time a new Alzheimer’s drug was approved. What it tells us is that the path for innovation is not straightforward, especially for something as complex as Alzheimer’s research. The journey during Biogen’s many years of research and development has been humbling, but we have learned from industry’s past research efforts and been determined to follow the science, always driven to address patients’ unmet needs. 

 

ADUHELM is a first-in-class approved therapy: I believe it will be the catalyst to a new era of innovation for Alzheimer’s disease, and the first of many new treatments available to patients. More resources will be drawn into research that can help patients through the disease continuum, explore new pathways, and find potential therapy combinations.  

The use of this drug involves some important questions about patient consent, precisely because the drug will most likely be used with people who have "confirmed presence of amyloid pathology and mild cognitive impairment or mild dementia stage of disease, consistent with Stage 3 and Stage 4 Alzheimer’s disease," the group of patients who took part in the pre-approval clinical trials.  What is the process for obtaining such consent with cognitively-impaired patients?

Several articles have explored this topic outside of the specific drug in question:

In England, the nonprofit organization Physiopedia, offers a detailed protocol for informed consent in the context of cognitive impairment.  For example, it suggests assessment of competence involves paying attention to four main abilities:

  1. The person must have sufficient capacity to understand the information. If the study involves a considerable degree of risk, more information must be provided, particularly about possible risks and benefits, and the potential participant must be able to understand such information.
  2. The person must be able to retain, use and weigh up such information long enough to be able to make a decision. In addition, they must also be able to understand what the decision is about, why they are being asked to make it, and what the consequences of making or not making that decision might be. 
  3. Possible benefits, risks and inconvenience linked to participating in research must be understood and weighed against the person’s own values and goals, which means that the person must understand how participating might affect him/her personally (High, 1992 and Stanley et al., 1984 in Olde Rikkert et al., 1997).
  4. The person must have the ability to communicate his/her decision.

See also:  "Informed Consent in Two Alzheimer's Disease Research Centers: Insights from Research Coordinators," by Christin M. Suver, and others, published April-June 2020, and announcing the plan to use the research to assist in development of "an electronic informed consent (eConsent) designed to boost engagement, enhance trust, and improve understanding by supporting participants' direct agency in the IC process."  

June 10, 2021 in Cognitive Impairment, Consumer Information, Dementia/Alzheimer’s, Ethical Issues, Federal Statutes/Regulations, Health Care/Long Term Care, Statistics | Permalink | Comments (0)

Tuesday, June 8, 2021

In Search of the Abracadabra for Alzheimer's Medicines

I used to follow (and regularly blog about) new drugs in the pipeline for Alzheimer's treatment.  Then I realized that the drugs weren't making it to the market place.  While attending medical programs about R & D, I learned that it was going to be tough to find any magic treatments, much less "cures."

To it was interesting to read this week that for the first time in some 18 years,  the FDA has approved use of a new drug, with the marketing name  Aduhelm and the generic name Aducanumab  (kind of sounds like abracadabra, doesn't it?), manufactured by Biogen.   

Aduhelm is described by the FDA as an "amyloid beta-directed antibody," which was approved under an "accelerated approval pathway," to give "patients suffering from a serious disease earlier access to drugs when there is an expectation of clinical benefit despite some uncertainty about the clinical benefit of the drug." 

But there is a lot of sobering news accompanying this announcement:

First, the mechanism of delivery:  monthly intravenous infusions, which means a clinical visit lasting at least an hour per infusion.

Second, Biogen's own predictions about cost:  a "list price" predicted to average  $56,000 per year per patient!  Yikes.

Third, the critical response from a range of experts in relevant research, pharmacy and health fields about the approval process to date, indicating a history of interruptions in the clinical trials when preliminary results showed little to no evidence of clinical benefit. 

Fourth:  the need for assessment before the first infusion with an MRI, plus recommended follow up MRIs prior to the 7th and 12th infusions, to assess the potential for ARIA-H, which are amyloid-related abnormalities, also potentially associated with edema in the brain.

Here are some links (and I'll try to keep this list up-to-date as new info comes in):  

Draft Evidence Report dated 5/5/2021 from the Institute for Clinical and Economic Review on "Aducanumab for Alzheimer's Disease: Effectiveness and Value." 

Letter from American Geriatrics Society dated 6/2/2021 to FDA expressing concern about "premature" approval

STAT's commentary, dated June 7, 2021 on FAQs: What You Need to Know about the Alzheimer's Drug Aduhelm

New York Times, dated June 8, 2021:  FDA Approves Alzheimer's Drug Despite Fierce Debate Over Whether it Works

June 8, 2021 in Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Ethical Issues, Federal Statutes/Regulations, Health Care/Long Term Care, Medicare, Science, Statistics | Permalink | Comments (0)