Elder Law Prof Blog

Urging Canada to Move Boldly, While Also Adopting Safeguards, in Development of Treatments for Alzheimer's Disease

As many readers will know, during the last several months I've worked under the auspices of the Fulbright Scholar program, serving as the 2024-25 Visiting Research Fellow at University of Ottawa's Centre for Health Law, Policy and Ethics.  In that role, I had an opportunity to consider carefully issues at the intersection of aging, health practices, legal regulations, government policy and ethics.  High on this list of overlapping concerns is the need for solutions to Alzheimer's Disease.

The development of treatments for Alzheimer's Disease requires bold thinking and, as I have learned, lots of data capture in order to craft safeguards and monitor results accurately.  Dr. Andrew Frank, a cognitive neurologist at Bruyere Health Research Institute in Ottawa, shared hours of his time with me, walking me through how he approaches consideration of potential therapies in his cognitive neurological clinic.

This spring, I also taught an elder law module at Penn State Dickinson Law where my law students explored patient's wishes, as well as risks, benefits and safeguards for Alzheimer's medications, with awareness of serious mishandling of some key data in the past.  With careful consideration of risks and after weighing the importance of treatment for the disease, I recently joined Dr. Frank in writing to urge Canada as a nation to move forward  on development of medications.  On Thursday, our joint Op-Ed essay appeared in the Montreal Gazette.

You may be able to read the full article (there is a paywall triggered by multiple access attempts) on the Montreal Gazette here.  We welcome your comments online.  My special thanks go to Professor of Law Vanessa Gruben at University of Ottawa and Dr. Kumanan Wilson at Bruyere, who offered important encouragement for our collaborative work.  

Thinking About Implications of Mishandled Research into Alzheimer's Disease and Related Disorders

As someone who has spent the majority of my academic career thinking about legal implications of age-associated cognitive impairments, I've often been tempted to write about the latest science-based "breakthroughs," especially as they may relate to Alzheimer's Disease.  But over time, I came to a personal belief that most of the research connected to prevention or cures for these diseases was likely to drift away, and not prove to result in productive science-based changes in the near future.  Thus, most of my research time in aging has focused on issues about care (both healthcare and social care), finances, and access to justice issues, for both affected individuals and their families and caregivers.  There is plenty to keep a law-related researcher on aging busy with this focus. 

As I grow older, and as the heritage from my own family suggests Alzheimer's or related disorders will affect my generation directly, I do find myself looking more carefully at claims about scientific  breakthroughs on prevention or treatment.  My Fulbright scholarship time in the Fall of 2024 allowed me to do a lot of catching up on science-based developments. For example, my news feeds began sending me regular updates on potential drug interventions for a variety of age-related diseases, including diseases of the brain.   As I'm not "in" science research per se, I knew I was likely hearing only part of the science research picture, but the news was intriguing. Who doesn't hope for breakthroughs that mean you may be able to avoid losing essential cognitive functions, especially the ability to think and communicate clearly?  For example, one of my long-standing concerns is about financial exploitation of older adults.   Therefore, an area of science-research that caught my attention is about studies suggesting that a measurable loss of "entorhinal cortex thickness" may be a factor in financial vulnerability in "cognitively unimpaired older adults."  Similarly, it is exciting to hear that my own state of Pennsylvania is committing real dollars in a bipartisan focus to address "Alzheimer's, dementia and related disorders." 

Then the most recent sobering news items about science-based research interrupted my work, including:

• Articles focusing on problems arising in drug-trials testing potential medications aimed at intercepting the progress of Alzheimer's Disease.  For example, see The New York Times article by Walt Bogdanich and Carson Kessler that appeared originally on October 23, 2024 on "What Drugmakers Did Not Tell Volunteers in Alzheimer's Trials" about their susceptibility to brain injuries -- including brain bleeds or brain swelling that could lead to death -- while participating in testing.  
• The New York Times Opinion piece on Sunday, January 26, 2025, describing what the featured author, Charles Piller, calls a "legacy of lies" in Alzheimer's science. See the electronic copy of  "The Devastating Legacy of Lies in Alzheimer's Science" at  https://www.nytimes.com/2025/01/24/opinion/alzheimers-fraud-cure.html, which was also published as the lead story in the Sunday, January 26, 2025 print edition. 

 I have yet to see responsive commentary from the science researchers.  But, as a law-related researcher, here are some of the implications I can see from emerging news about  "mishandling" of the research connected to the causation and prevention of Alzheimer's and related diseases:

A.  Lawsuits.  Of course.  Sadly so. 

B.  According to articles on drug trials for an experimental Alzheimer's drug known as BAN2401, there are indications that volunteers were told that certain genetic profiles might predispose people not only to Alzheimer's Disease, but also to brain injuries from the drugs, and yet participants may not have been told the results of testing on whether they had the risk-related genetic factors.  Such a non-disclosure practice raises legal concerns about whether there was "informed consent" by or for individuals entering the trials.  How did this happen?   

C.   In the most recent piece linked above, the author has indicated that a huge swath of formal research on Alzheimer's causation and treatment is flawed.  The author indicates that a "team of brain and scientific imaging experts" helped him analyze "suspicious studies by 46 leading Alzheimer's researchers." Further, he says that "the experts identified nearly 600 dubious papers from the group that have distorted the field -- papers having been cited some 80,000 times in the scientific literature."  Certainly this description would seem to carry significant concerns about the accuracy of the research. But, from a legal standpoint, it also suggests that findings may lead individuals, families, caregivers, government entities, and potential funders, to be more likely to disengage from science-based analysis of brain function, treatment and care protocols for these admittedly complex diseases.  How will this research community establish reliable databases for the future? How does one trust new pathways for research, including the possibility of alternatives to the "amyloid hypothesis" for causation of Alzheimer's?  One funding argument is to focus more on encouraging "healthier" lifestyle choices and behavior-modifications, but is that enough incentive if there is no "real" documentable hope of a better outcome? 

Such indications of bad research at a core level also play into the hands of a new national Administration that seems eager to dump and defund traditional science. 

The essential problem is that we need more engagement, not less, to truly have a hope of making society healthier, safer and better able to support dignity as we age.  

Thinking About Navigation Tools for Individuals, Families and Caregivers with Questions about Alzheimer's, Dementia or Related Disorders

Having returned this month to Pennsylvania following a wonderful experience as a visiting Fulbright Scholar at the University of Ottawa in Canada, I'm digging into the next part of my ongoing research. I have a lot to think about, having been inspired by more than 35 interviews or presentations I observed during my four months in Canada.

Law professors, especially those involved in public outreach projects, tend to attract "questions" from the public.  Most of the callers who reach out to me stop short of asking for legal advice. In fact, I've realized that most of the inquiries I receive are from people asking, "What do I do next?"  They are seeking practical guidance. 

I actually had more time than usual to listen to some of these informal inquiries while in Canada.  I'm always careful to clarify that I cannot and do not give legal advice when contacted in this manner.  At the same time, I usually learn that the questions are often more of the "how to do I find the right advice and is it even legal advice I need?" variety.  Examples:

• One call was from a husband and wife who were seeking to understand and manage the financial consequences of a senior living contract they had signed.  Both halves of the couple had been diagnosed before signing the contract with "early" stages of dementia. As it turned out, the wife had no true understanding of the contract and was refusing to "go."  This call involved multiple states, and "choice of law" questions.
• One call was from an attorney who was asked by neighbors and family members of an older person to assist an older person who seemed to be struggling financially, possibly because of third-party exploitation.  The facts were complicated, but the attorney was calling because the living situaton, though far from ideal, might be with the "consent" of the individual. 
• One call came after a Fulbright presentation I gave at the University of Ottawa where I explored the question of "Protection versus Autonomy" when facing concerns for older people -- or sometimes involving similar questions from adults who are "younger." The caller this time was concerned that clear wishes of an adult family member regarding "end of life" were being ignored by an appointed guardian.   

From my earlier work as the founder of an Elder Protection Clinic for Penn State Dickinson Law,  I recalled that we would often begin any responses to such questions from actual clients in a "step-by-step" fashion, such as:

A. Is there a threshold need for a "safer" setting for the person under consideration?  If so, what options exist?

B. Is there the potential that that impaired cognition is a reason for the person to be unable or unwilling to take self-protective actions?  If so, is there a need and an option for the person's capacity to be evaluated?

C. If a longer term plan is needed, are there "legal" components to the plan, and do those legal components benefit from medical or social supports?  If so, what accessble options exist for the person in need?  

When considering these calls while I was in Canada, I realized I was already seeing a new generation of relevant navigation tools under development in Ontario. For example, I learned about "apps" that provided navigation suggestions for individuals with heart conditions, or cancer, or Parkinson's Disease. The experts making the presentations were deeply impressive.  Many of these "path-finding" apps were directly tied to answers supported by Artificial Intelligence (AI). 

On the other hand, my observation is that most of these "apps" were "just" medical, or "just" social services in nature.  Would it be possible to design a broader-based "App" for older individuals, their families and their caregivers that can offer a wider array of possible approaches, including law-related options?  Jokingly, I ask myself, can AI help me "clone" myself and clone other people who serve as navigator tools in age-related fact patterns? Can an individual U.S. state -- Pennsylvania? -- be a leader in creating a jurisdiction-specific format?  

That's part of what I'm thinking about now, as I continue my Fulbright Fellowship research, with the inspiring examples provided in Canada, and especially with examples coming directly via my hosts at the uOttawa Center for Health Law, Policy and Ethics. Thank you, Director Vanessa Gruben and Associate Director Dina Idriss-Wheeler! 

Feel free to send me your own thoughts (probably best to do so via email as the "comment" function on this website is quirky).  

Bruyère Health and uOttawa: Imaging a Future Without Disability or Dementia?

On November 28, 2024, I was giving "thanks."  Less because it was Thanksgiving Day in the United States, but more because I was witnessing a fascinating day of health-related research reports by individuals and teams connected to Bruyère Health Research Institute in Ottawa, Canada.  Dr. Kumanan Wilson, CEO at Bruyère, made my attendance possible, and it was an inspiring day, hosted at the Canadian Museum of Nature.  Presenters were asked to frame remarks in the context of "Imagining the Future...."  And the most interesting questions asked us to "imagine the future without disabilities or Alzheimer's Disease." 

Some of the highlights of the packed program:

• Keynote speaker Dr. Claire Kendall, Associate Dean, Social Accountability, uOttawa, who describes herself as a practicing family physician as well as researcher, and who was imaging a future where local data transforms the health care of both patients and communities.  She explained the research underway to track avoidable deaths, as well as information showing inequities within and between neighborhoods in terms of access to housing, food banks, COVID-19 care, and in-person primary health care.  I was especially intrigued by the Ottawa Neighbourhood Study Project.  
• "Snapshot" Speaker Sessions, often with graduate students making the presentations.  For example, several studies are looking at what patients say about why they use hospital Emergency Rooms rather than primary health care doctors for "routine" care needs.  These interviews are helping to create "collaboration" among different community venues, including libraries and food stores, to make health care access easier, including "pop-up" health clinics.    
• Poster programs that provided me with my first introduction to "social prescribing pathways," especially for older people.  
• Learning more about technology advances, including the "Kira" project that uses virtual reality to create conversation opportunities for people with dementia.  
• Keynote speaker Dr. Andrew Frank, a neurologist and investigator with the Bruyère Memory Program and a professor at uOttawa.  Dr. Frank asked us to consider how it is that Alzheimer's disease continues to devastate individuals without us taking action. He said, "Alzheimer's Disease 'deserves' a response."  Dr. Frank outlined the latest work on biomarkers and the possibility of simple blood tests.  He explained the "gut microbiome project," enhancements for "Smart Homes," and safety adaptations for driving.  He talked about the challenges of promising drug trials for treatment (not cures) for Alzheimer's -- and he was frank about the ways in which Canada can and should play important roles in future research.

I have the feeling I might have been the only law professor in the room.  But, I also suspect I'll be inviting many of these researchers to future conferences "for" lawyers and law professors!  

Presenting to uOttawa on "The Challenges of Advancing Effective Justice for Older People"

I'm laughing as I type this post today, because it is snowing in Ottawa.  The photo here was taken while crossing my favorite bridge over the Rideau Canal on the way to the University of Ottawa, just as the snow is getting started today. 

This is the first time it has snowed while I've been in residence as a Fulbright Research Scholar at the University of Ottawa.  So. of course, it is snowing as I'm scheduled to make a live presentation today on behalf of the LIFE Research Institute and the Centre for Health Law, Policy and Ethics on campus at uOttawa.  Fortunately, there is a live-streaming option for attendees.  

To say this entire semester has been a wonderful gift to me from my hosts at Fulbright and uOttawa is an understatement.  I have many people to thank!  But, first, in case you want to see the slides I will use to keep myself on track while speaking today, here is a link.

I'm looking forward to using what I'm learning at uOttawa in my future research and publications.   So, stay tuned!  

Canadian Province Begins Permitting "Advance Requests" for Medical Assistance in Dying

In a first for Canada, the province of Quebec last year enacted a law permitting "Advance Requests" for Medical Assistance in Dying (MAID). Quebec delayed implementation of the law to permit the federal government to amend the Canadian criminal which restricts MAID to instances where the person making the request still has "capacity" immediately before the action is to be taken.  But effective on October 30, 2024, Quebec announced that despite no action at the federal level, it would begin the approval process for Advanced Requests immediately, deemed to be supportive of the wishes of people with degenerative cognitive conditions, including Alzheimer's.  

Following the announcement, the federal Minister of Health says Ottawa will not be contesting advance MAID requests in Quebec despite the conflict with federal criminal law.  CBC News reports the federal government says it "will launch a countrywide consultation on the issue next month, with a report set to be published in March 2025."

As a U.S. outsider watching this play out, the Quebec decision also appears to me to reflect growing political tensions, including those who are pressuring Prime Minister Justin Trudeau to grant their various demands, such as demands for increases in federal funds flowing to provincial projects, as the price to pay for any ongoing support for his national leadership position. 

Lucidity for Persons Living with Advanced Dementia, from the Perspective of Caregivers

I've been working on an article examining lucidity in persons diagnosed as having some form of dementia.  My analysis has been largely focusing on the implications of lucid intervals for attorneys, including those involved in advising on estate planning and care-related needs.  This has helped me to tap into other ways of thinking about lucidity and most recently I read an article in The Gerontologist, titled "Caregiver Accounts of Lucid Episodes in Persons with Advanced Dementia," published in June 2024, by a research team lead by Jason Karlawish, M.D. at the University of Pennsylvania.  

The article begins with careful look at definitions used in a research study that relied in major part on telephone interviews with caregivers.  For example, threshold questions for the caregivers were whether they had observed or were aware of "any unusually lucid moments" during the most recent four months (or during the final for months of a person's life if they were no longer alive). This approach was to isolate a concept known to the researchers as "paradoxical lucidity."  The working definition for paradoxical lucidity, from a 2019 National Institute on Aging Study, was "unexpected, spontaneous, meaningful, and relevant communication or connectedness in a patient who is assumed to have permanently lost the capacity for coherent verbal or behavioral interaction due to a progressive and pathophysiologic dementing process."  Eventually the study focused on 30 caregivers (and a corresponding 29 individuals with advanced dementia).  All of the final participants were "family caregivers."

There is a lot to unpack in the findings.  Although the length of the lucid moments for a given individual were usually very short -- and the longest was just 45 minutes -- the incidence of such moments across the study population was  frequent.  The findings combined with other empirical studies, lead the researchers to "question the 'paradoxical' in 'paradoxical lucidity.' Here, 'paradoxical' denotes an observation that is inconsistent with disease theory."  The researchers suggested there may be a need to "modify the theory of disease" for "severe-stage dementia."  

The study's caregiver-participants uniformly reported that "witnessing a lucid episode did not influence decisions about medical care."  However, these researchers "found that lucid episodes affected approaches to daily care, shaping, for example how often they brought the person living with dementia into social situations, diet, and sleep schedules."  The article continued:

"Such changes are substantive and important but not framed by caregivers as critical decisions  They are alterations in what might be called the 'ordinary ethics' [citation] of caregiving, evincing shifted understandings of what constitute good care."  

Certainly this study is not being used to talk about legal implications of lucid moments.  That is important too.  

Case Western Reserve Hosts Law-Med Conference on Diminished Capacity and the Law

Law and Bioethics Professor Sharona Hoffman, Co-Director of the Law-Medicine Center at Case Western Reserve University organized a terrific symposium on Cognitive Decline and the Law, held on March 1, 2024.  Thank you, Sharona, for inviting me to participate!   

In my talk, I  suggested that the time has come for clearer thinking on a long-standing legal standard, known in many jurisdictions as the "Lucid Moment" or the "Lucid Interval Doctrine," that has permitted attorneys' testimony on clients' orientation in time, place and person to suffice as evidence of sufficient capacity in legal transactions, even in the face of expert medical testimony about Alzheimer's Disease or other advanced dementias. Research demonstrates that Canadian academics have been  questioning reliance on "lucid intervals in dementia" as early as 2015.  My additional thanks to Penn State Dickinson Law student and research assistant extraordinaire, Noah Yeagley, for joining us at the conference and who was especially enjoying this conference opportunity to revisit his pre-law school graduate work in neuroscience.

The day began with a keynote presentation by Dr. Carol Barnes, University of Arizona, addressing "Brain Mechanisms Responsible for Cognitive Decline in Aging."  One key takeaway for me from her presentation was that while physical exercise is important for overall health, "learning new things" is probably even more important in maintaining cognitive function over time.  

The first set of panelists dug deeply into the roles of people supporting others in decision-making, whether with the aid of formal "supported decision-making agreements" and use of powers of attorney or different forms of substituted judgment.  Rebekah Diller, Clinical Professor at Cardozo Law, Megan Wright, Professor of Law and Medicine at Penn State Law, and James Toomey, Assistant Professor of Law at Pace University were the presenters on cutting-edge issues.

In the second panel, Neurology Professor Mark Fisher from the University of California Irvine was very timely in his focus on the potential for cognitive decline in both voters and candidates in politics, discussing a wide range of possible examples across history in the U.S. and Israel.  Associate Professor Jalayne Arias from Georgia State University School of Public Health demonstrated significant concerns in the overlap between criminality and dementia, whether from the standpoint of arrest, conviction, incarceration, or release of persons with cognitive declines.

Sharona Hoffman did double duty during the packed day, presenting issues of cognitive declines both in the workplace and on our roads.   She used humor to soften some of the tough news on the lack accountability for risk in either domain.  It was clear from the audience response -- in both the sold-out auditorium and on-line -- that everyone has a story about dementia and drivers, often from our own families.

My long-time friend working specifically in the "elder law" space, Nina Kohn, Professor of Law at Syracuse and now also a Distinguished Scholar in Elder Law at Yale Law School, gave the latest on proposed -- and much needed -- reforms in court-appointed guardianships, highlighting key concerns addressed in the Uniform Guardianship, Conservatorship, and Other Protective Arrangements Act,  adopted as of today in two states, Maine and Washington, and introduced or pending in at least four more states.

The speakers in the important last panel of the day were clearly looking to the future on research and developments in the diagnosis, care and community response needed for "healthier" approaches to problem-solving.  Dr. Jonathan Haines, a genetic epidemiologist at Case Western Reserve University, surveyed the advances and challenges in attempting to build a deep bank of genetic information on Alzheimer's Disease. Law Professor Emily Murphy at UC Law San Francisco outlined the emerging theory of "collective cognitive capacity" as an approach to the challenges posed by social, environmental, and economic factors that may be impacted by brain health and cognitive decline.  Tara Sklar, the Director of the Health Law and Policy Program for the University of Arizona College of Law spoke on the potentials and challenges for telemedicine in treating patients with cognitive declines. Professor Sklar is also the new chair of the AALS Section on Aging and the Law.  

A packed day, for sure, with support from Virginia Lefever, Editor for CWLR's journal of law and medicine, Health Matrix, who was receiving formal drafts of papers 
from presenters for a future issue.

And for those of us who were determined to follow Dr. Barnes' encouragement to "keep learning," the evening did not end early, as we continued with a tour of the University's wonderful public art spaces and then on to the world-renowned art collections at the Cleveland Museum of Art -- including a "First Friday" party that had lots of people dressed up and dancing!  "Hands"-Down, it was a great conference!

NYT's Ethicist: "My Friend is Trapped in a Nursing Home. What Can I Do?"

The New York Times runs a regular column called The Ethicist.  It poses intriguing problems and the most recent one is definitely relevant to families, older individuals (and potentially anyone with a disability) and elder law attorneys.  Because the analysis is behind a paywall for "subscribers only," I am reluctant to say too much here  But I can say that the question of what happens when someone with "reduced" cognitiion becomes entangled in a well-meaning but still demeaning care setting, makes the need for experienced legal assistance exceptionally clear. This particular essay would make a great problem for  a student seminar!  

See My Friend Is Trapped in a Nursing Home:   What Can I Do?  presented by columnist Kwame Anthony Appiah, in the New York Times online edition published July 28, 2023.  

Arizona Feature: "Arizona Seniors At Risk of Harm"

Appearing on the front page of the Sunday edition of the Arizona Republic (5.21.23),  the first paragraphs of an extended feature article point to the potential for harm to residents and the consequences of staff shortages or inattention at Arizona facilicities caring for residents with dementia. Two women in their 90s  are residents of an elegantly appointed assisted living facility-- but as the article begins they are covered in blood -- and the investigation of what happened there is hampered by the inability of anyone to give clear explanations. 

The feature, based on the newspaper's review of "thousands of pages of police and state regulatory reports," offers multiple reasons for such injuries in "senior living" facilities, including a lack of clear reporting rules and the absence of investigation by state agencies, especially for facilities licsenced for "assisted living" as opposed to "nursing home" care.  From the  feature:

In memory care units, anything can become a weapon -- toilet plungers, shoehorns, electric razors, TV remotes, metal trash grabbers and walking canes. Hundreds of vulnerable seniors, particularly those with dementia, contend with violence at the end of their lives in the very places that promise to keep them safe. 

 

Shortages of staff-- brought on by companies looking to maximize profits or stave off financial losses -- lead to more harm. Assisted living facilities can keep resident clashes underwraps [in Arizona] because regulartors don't make facilities report incidents to their state licensing agency.  Federally regulated nursing homes have to report but little attention is paid to the problem.

 

The Arizona Republic combed through thousands of pages of policce and state regulatory reports to find more than 200 clashes at senior living facilities from mid-2019 to mid-2022. Residents punched, hit, pushed, kicked, poked scratched, bit, elbowed or spat on other residents or employees.

Experts consulted by the Arizona Republic noted that one "key [to reducing problems] is tailoring a [resident's] care plan to each resident's needs, equipped with activities that bring their lives a sense of purpose."  Further, "[a]ssisted living facilities commonly get in trouble for having inadequate, delayed or out-of-date plans for residents that outline their need or for failing to follow those plans."

The article cautions that if a problem is not tracked, "it doesn't exist":

The Arizona Department of Health Services licenses facilities and is responsible for investigating complaints but assisted living centers don't have to report nonfatal injuries to the agency.  

 

That's not normal.  Most states require facilities to report to their licensing agency when residents get hurt, according to The Republic's review of state laws.

The feature suggests that "Arizona lawmakers and regulators have prioritized the needs of assisted living and nursing home companies over their residents," comparizing Arizona to  "[a]t least 17 states [that] require assisted living facilities to get inspected about once a year, with a few even requiring two inspections per year. " 

For the full Arizona Republic feature published in its print version on May 21, 2023, look for  "Arizona seniors at risk of harm: Facilities experiencing staff shortage, residents with dementia enable violence," by reporters Caitlin McGlade, Melina Walling and Sahana Jayaraman. The extended Sunday feature appears to follow several shorter articles available online in May from the same reporting team. 

Signficant Article from NY Times

This is one of the most important and comprehensive articles I've read on dementia, consent, elder abuse, and guardianship.  

The Mother Who Changed: A Story of Dementia was published on May 9, 2023.  I plan to assign it to my students.  I hope you read it.

Ohio Appellate Court Confirms that Agent Not "Personally Liable" for Costs of Nursing Home Care

In one of the earliest articles I wrote on familiy member liability under nursing home contracts, I cautioned that federal law prohibits nursing homes from requiring "guarantees" of payment by family members.  Any family member who is asked to sign "on behalf" of a loved one should carefully consider the role he or she is undertaking, especially if the only role acceptable  and affordable for that family member is "agent."  See "The Responsible Thing to Do About 'Responsible Party' Provisions in Nursing Home Agreements," published in 2004 in the Unversity of Michigan Journal of Law Reform.   

On May 1, 2023, an appellate court in Ohio cited this article when concluding that in the case before it, the daughter's role as agent acting under a power of attorney prevented her from becoming personally liable for her mother's costs of care.  The daughter appears to have properly cooperated or assisted in the original Medicaid application.  Further, the daughter gave authority to the nursing home to debit the bank account where her mother's SS checks were deposited each month, in order to pay itself the "patient pay portion" of the monthly allocation for costs of care when a patient has low income but is otherwise eligible for Medicaid.  Thus the nursing home appears to have had at least the same ability as the daughter to avoid accumulation of a sum greater than $2,000, a resource limit that can trigger disruption of  Medicaid benefits.  There was still another party that could be faulted for what appears to have been an unplanned "excess resource" situation.  The court pointed to the failure of the state agency to give effective notice to interested parties about when and why it was terminaating Medicaid.   See National Church Residences First Community Village v. Kessler, 2023 WL 3162188  (Ohio Ct. App. 2023).  

Bottom line?  Family members or others attempting to help an incapacitated person get proper care are well-advised to consult with an experienced elder law attorney early in the process about how to qualify and protect eligability for Medicaid.  Further, clear, direct communications between the agent, the facility and state agencies are important when seeking to facilitate prompt, proper payments.  

Overwhelmed family members should not be scapegoats, even (especially?) when overwhelmed state agencies and facility billing offices are themselves missing opportunities to keep benefit payments flowing properly.  

San Diego Expands its Pilot Program for Alzheimer's Response

As described in The San Diego Union-Tribune, San Diego's Alzheimer' Response pilot program, launched in 2018  for the "East County," is a success, helping the public in better addressing people coping with Alzheiemer's Disease or other dementias.  The Alzheimer's Response Team (or ART) now covers the full San Diego region, with help from $1.5 milliion in funding and a staff of  10.5 full time employees.   Originally the program collaborated with an outside nonprofit organization, but "the county now provides its dementia training in-house."

Concerned family members have the option of asking for ART services, often as a way to avoid having problematic episodes escalate.  The article, published online on 3/27/2023 explains: 

ART focuses on two aspects of dementia care: crisis response and crisis prevention. To better respond to emergency calls related to dementia, law enforcement agents, first responders, social workers and mental health clinicians receive training on how neurodegenerative diseases like Alzheimer’s impact someone’s behavior.

 

That training helps first responders better recognize the symptoms of dementia during emergency calls. They can then call in the ART specialists to work with the person in distress and provide in-home services for clients living with dementia and their family caregivers.

 

Eugenia Welch — president and CEO for Alzheimer’s San Diego, which helped develop the initial programming — said the first responder training and specialized ART staff are key to the program’s success. Interacting with someone diagnosed with dementia, she added, is different than working with people who don’t have neurodegenerative disorders and “takes a unique skill.”

 

“I think by having the specialized team going out, they’re able to be more in tune to the services that are available for people living at home with dementia and able to more quickly connect people with those services to get them the support they need,” Welch said.

 

The ART staff may follow clients to provide support in order to prevent new crises, and to connect the families with local dementia care resources.  According to the article, while "Adult Protective Services Cases" are usually closed in a month, ART support services can continue for six months or longer.  "Staff check in with the client and their family regularly until ths situation is stablized before closing the case."

 

Family members or other concerned people can call 911 in the event of a serious situation developing and should "let disptachers know somoene in the home has either been diagnosed with dementia or is supsected to be living with the condition undiagnosed."  The article says that services can also be requested through the countys's Adult Protect Services Call number directly, rather than through 911.  

USA's Fastest-Growing Demographic Group? Consider the Implications of People Age 50+ Who Live Alone

The New York Times Sunday edition includes a feature article about a trend, "more older Americans living by themselves than ever before."  

Using graphs, interviews and research results, the article makes a clear argument, that "'while many people in their 50s and 60s thrive living solo, research is unequivocal that people aging alone experience worse physical and mental health outcomes and shorter life spans." 

Plus, the article implies that evidence that shows a growing share of older adults (age 55 plus) do not have children, means there is a public policy concern "about how elder care will be managed in the coming decades." 

For me, this article crystalizes two legal concepts I write about frequently:  "filial support" laws that can be used to compel adult children to care for or maintain their elders, and "continuing care retirement communities," that permit people with sufficient -- make that significantly sufficient -- financial resources to plan for how their care needs may be handled in a planned community.  

Law professors can probably use the article to stimulate waves of student projects about personal and collective responsibilities in American societies and beyond.  

For more, see  "As Gen X and Boomers Age, They Confront Living Alone," by Dana Goldstein and Robert Gebeloff. 

 

Loss of the Ability to Evaluate Risk vs "Winning the Sweepstakes"

When I was a child, my grandfather had an ongoing relationship with Readers' Digest.  Not just their magazine or their condensed books, but with the company itself. He was always convinced he had won their latest sweepstakes and his big-dollar prize was just around the corner.  It was a bit of a family legend.  

Recently an older friend, who had celebrated a 90th birthday a few months back, called to ask for help in filling out forms for the Publishers Clearing House sweepstakes.  Over the years my friend had purchased various items from PCH, including a set of solar lights that never worked properly.   The odds of actually "winning" the PCH sweepstakes are astronomically high.  My friend thought buying something would increase the odds of winning no matter how often I explained over the years that was not true.  Sometimes new "stuff" would appear in the mail, along with a corresponding bill for the "order."  It was hard to know whether my friend had actually ordered the items.

This time, my friend was thrilled to explain the long-awaited victory was almost here -- as the latest mailing "guaranteed" the check would be arriving by mail and all that was needed was timely confirmation by return mail of a willingness to accept the prize.  Two envelopes were provided to help in "claiming" the victory.  

I walked patiently through the colorful documents with my friend, pointing out all my examples of clever language.   I showed my friend a copy of a case, Harris v.  Publishers Clearing House, an unofficially reported  federal decision from 2016, that described another person who also thought he had won for the exact same reasons as my friend. The prize never came. He was suing -- without the benefit of an attorney --  for breach of contract, fraud, and alleged violations of Deceptive Mail Prevention and Enforcement Act, 39 U.S.C. Section 2001 et seq.  But the judge ruled against him, dismissing the case with prejudice while explaining the language in the letters "merely informed the plaintiff that he had a chance to win. . . . "  

My friend seemed to understand what I was saying.  My friend asked my opinion -- "what should we do?"  I suggested we tear up the letters and throw them in the trash.  My friend put the documents -- untorn -- in the waste can.  We talked about the fact that continuing to participate with this company was wasting money, and was also an example of "feeding the troll," encouraging the company to keep sending those "too-good-to-be-true" letters to other people.   We  ended our discussion with a good hug.

The next morning I stopped by to drop off newspapers and a fresh donut.  As I waited for my friend, I saw the top of two "official" envelopes addressed to Publishers Clearing House peeking out of the top of the home's mail box for pick up -- with fresh stamps.   I couldn't help but sigh.  

Here is a link to a science-based discussion about early assessment of cognitive impairment, and the importance of histories provided by a reliable informant or care partner for diagnostic assessment.  Victimization in scams is one of several behavioral examples listed in the article that can point to changes in cognition, associated with the loss of the ability to evaluate risk or odds of winning. 

Isn't it sad that it might be easier to diagnose cognitive impairment than to get a ruling finding deceptive trade practices?  

Register Now-Webinar on Guardianship Systems & Practices

The National Center on Law & Elder Rights has announced a webinar on Thursday September 22, 2022 at 3 eastern on Strengthening Rights & Ensuring Accountability in Guardianship Systems & Practice.   Here's a description

Improvements to state court adult guardianship systems can include the promotion of less restrictive options, strengthening rights, and ensuring accountability. Making significant changes in practice and systems requires the commitment of many parties, including courts and the legal, aging, and disability communities.

Join us for Part 1 of this training series to learn about models and promising practices to reform guardianship being implemented by three “highest state court” recipients of the ACL Elder Justice Innovations Guardianship Improvement grant program (Maryland, Minnesota, and Oregon).

This training will also preview Part Two of this series, which will focus on strategies for legal advocacy for proposed protected persons and protected persons.  

Presenters will share strategies they are implementing to:

1. Address diversion from, alternatives to, and revocation of guardianship;
2. Redress occurrence and risk of abuse, neglect, and exploitation in guardianship; and
3. Enhance the fairness, effectiveness, timeliness, safety, and integrity of adult guardianship or conservatorship proceedings.

Speakers:

• Hilary Dalin, Office of Elder Justice and Adult Protective Services, Administration on Aging Administration for Community Living
• Nisa C. Subasinghe, Maryland Judiciary
• Jamie Majerus, Minnesota Judicial Branch
• Christian Hale, Oregon Judicial Department
• Jeffrey Petty, Oregon Judicial Department
• Jessica Brock, Indiana Legal Services

Closed captioning will be available on this webcast. A link with access to the captions will be shared through GoToWebinar’s chat box shortly before the webcast start time.

This training will be presented in a WEBCAST format to accommodate more participants. Due to the high volume of participants, computer audio will be the only option to listen to the presentation. No telephone call-in number will be provided. Please plan accordingly. Thank you. 

This webcast will be recorded and available on our website shortly after the presentation. The recording and training materials will also be emailed to all registrants within a few days after the training.

The webcast will take place on Thursday, September 22, 2022, at 12:00 p.m. P.T./3:00 p.m. ET and will run for 75 minutes.

To register, click here.

Planning for Your Special Needs Child and Retirement

The New York Times ran this article last week. Planning for Your Retirement, and for a Child’s Special Needs, All at Onceexplains "[f]or parents of children who have serious disabilities or special needs, the challenges of growing and preserving their wealth are magnified exponentially, and the stakes are much higher. While they are trying to plan for their own retirements, these parents need to simultaneously secure the ‌ stability of a son or daughter who will be dependent on them‌ until — and even  after — their deaths." The article does a good job of framing and discussing the issues and options and provides good examples.

Hearing Loss, Cataracts, and Dementia

There seem to be a lot of articles in the media currently discussing the statistical relationship between hearing loss and dementia.  Of course, we need to remember the axiom that "correlation does not necessarily mean causation."  Still, recent studies and informed observations are intriguing.  For example one study underway is looking at whether treating hearing loss can reduce the risk of cognitive decline.  

Johns Hopkins is leading a large National Institute on Aging study to see if hearing aids can safeguard seniors’ mental processes. The study has multiple locations and has recruited nearly 1,000 people ages 70–84 with hearing loss. One group is provided hearing aids, while another group receives aging education. By early 2023, the study should provide definitive results on whether treating hearing loss will reduce the risk of cognitive decline. In essence, we’ll know whether the use of hearing aids can potentially reduce brain aging and the risk of dementia.

Some of this research is going beyond examining the potential for common causes for the two processes (such as poor diet and inadequate exercise, as well as uncontrolled blood pressure or weight).  Researchers are asking whether a failure to hear clearly can actually damage the brain's function.  NPR's Sunday Edition (8.21.2022) includes  a five minute interview with Dr. Frank Lin, at John Hopkins Bloomberg School of Public Health, who addresses three "major brain mechanisms" that may be affected by untreated hearing impairments: (1) the potential impact of the load on a brain from having to work harder; (2) the potential for hearing loss to actually affect the integrity of the brain's structure  because of atrophy of an essential function, and (3) the potential for loss of hearing to contribute to social isolation, further reducing engagement that keeps people (and their brains) interacting with the world around them. 

Dr. Lin is also pleased about the FDA finally opening access for Americans to purchase over-the-counter hearing aids, a change he's worked on and supported for some eight years.  He points out that currently only some 15 to 20% of Americans who could benefit from hearing assistance are getting the help they need, probably because of high costs and reluctance to see doctors. Dr. Lin says that any theoretical risks from over-the-counter sales (such as over- or under-amplification) is significantly outweighed by the benefits. 

Oh, and while I'm at this, the research suggesting that older people who have cataracts removed may be "nearly 30% less likely to develop dementia" is also interesting.

Hearing Loss, Cataracts, and Dementia

There seem to be a lot of articles in the media currently discussing the statistical relationship between hearing loss and dementia.  Of course, we need to remember the axiom that "correlation does not necessarily mean causation."  Still, recent studies and informed observations are intriguing.  For example one study underway is looking at whether treating hearing loss can reduce the risk of cognitive decline.  

Johns Hopkins is leading a large National Institute on Aging study to see if hearing aids can safeguard seniors’ mental processes. The study has multiple locations and has recruited nearly 1,000 people ages 70–84 with hearing loss. One group is provided hearing aids, while another group receives aging education. By early 2023, the study should provide definitive results on whether treating hearing loss will reduce the risk of cognitive decline. In essence, we’ll know whether the use of hearing aids can potentially reduce brain aging and the risk of dementia.

Some of this research is going beyond examining the potential for common causes for the two processes (such as poor diet and inadequate exercise, as well as uncontrolled blood pressure or weight).  Researchers are asking whether a failure to hear clearly can actually damage the brain's function.  NPR's Sunday Edition (8.21.2022) includes  a five minute interview with Dr. Frank Lin, at John Hopkins Bloomberg School of Public Health, who addresses three "major brain mechanisms" that may be affected by untreated hearing impairments: (1) the potential impact of the load on a brain from having to work harder; (2) the potential for hearing loss to actually affect the integrity of the brain's structure  because of atrophy of an essential function, and (3) the potential for loss of hearing to contribute to social isolation, further reducing engagement that keeps people (and their brains) interacting with the world around them. 

Dr. Lin is also pleased about the FDA finally opening access for Americans to purchase over-the-counter hearing aids, a change he's worked on and supported for some eight years.  He points out that currently only some 15 to 20% of Americans who could benefit from hearing assistance are getting the help they need, probably because of high costs and reluctance to see doctors. Dr. Lin says that any theoretical risks from over-the-counter sales (such as over- or under-amplification) is significantly outweighed by the benefits. 

Oh, and while I'm at this, the research suggesting that older people who have cataracts removed may be "nearly 30% less likely to develop dementia" is also interesting.

Can We Hear You Now? FDA Gives Final Approval for Over-the-Counter Hearing Aid Sales

The Food and Drug Administration issued its final ruling today permitting over-the-counter sales of certain types of hearing aids. The ruling takes effect in 60 days. As FDA explains:

This action establishes a new category of over-the-counter (OTC) hearing aids, enabling consumers with perceived mild to moderate hearing impairment to purchase hearing aids directly from stores or online retailers without the need for a medical exam, prescription or a fitting adjustment by an audiologist. 

 

The rule is expected to lower the cost of hearings aids, furthering the Biden-Harris Administration’s goal of expanding access to high-quality health care and lowering health care costs for the American public. It is designed to assure the safety and effectiveness of OTC hearing aids, while fostering innovation and competition in the hearing aid technology marketplace. . . . 

 

Concurrently with issuing the final rule, the FDA also issued the final guidance, Regulatory Requirements for Hearing Aid Devices and Personal Sound Amplification Products (PSAPs), to clarify the differences between hearing aids, which are medical devices, and PSAPs, consumer products that help people with normal hearing amplify sounds.  

This could be "huge" for helping older adults.  I know that for many adults, not just the older adults I've worked with, it is terribly frustrating to be unable to hear properly.  Plus, I think that for some people, the ability to "try" a wider range of devices, without the time and expense of visiting specialized doctors, may facilitate "realism."   

At the same time, I worry that for some older adults, who actually are willing to see their hearing aid doctor, sometimes it was this doctor or specialist who caught the "real" problems, including the potential for mild cognitive impairment.  Could we miss those opportunities for more holistic health evaluations?