Elder Law Prof Blog

Napping More Than Usual? Read This Article.

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

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

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

Introduction

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

Methods

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

Results

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

Discussion

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

The full study is available here.

Abuse of SNF Resident On Video

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

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

Caregiver Guilt: "When Will You Be Back?"

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

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

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

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

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

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

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

Early Diagnosis of Alzheimer's Through Testing

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

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

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

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

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

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

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

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

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

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

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

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

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

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

CMS Regs on Pre-Dispute Arbitration Clauses in SNF Contracts

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

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

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

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

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

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

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

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

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

Applications for Fellows at the Global Brain Health Institute

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

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

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

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

Red Flags That Might Signal Dementia

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

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

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

...

Here are some things to look for:

• Notes with reminders about simple tasks.

• When neighbors or friends share concern.

• Bills not paid or overpaid.

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

• Weight changes.

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

• Any behavior that is out of the ordinary.

• Picking up an object and using it inappropriately.

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

• Changes in speech, personality.

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

Two New Articles to Add to Your Reading List

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

Here is the abstract

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

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

Here is the abstract

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

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

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

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

Does the ALF Industry Need Federal Oversight?

That was the question posed in a recent article published in Cleveland.Com.  Amid growth of assisted living, some renew calls for federal oversight opens with an examiniation of hte requirements to be employed as an aide in ALFs.

Just read this to get a sense of the issues illustrated in this article:

The number of assisted-living centers in the United States has jumped more than 150 percent in the past 20 years, fueled by an increase of residents with cognitive issues, a willingness of facilities to take more frail patients, and families who wish to avoid nursing homes.

But while the centers’ clientele has changed dramatically, there have been few efforts to systemically re-evaluate staffing or training guidelines necessary to properly serve residents. This has led some advoctates of the elderly to renew the call for federal oversight of the facilities, much like nursing homes.

For instance, nearly half of the nation’s states lack extensive training programs for the facilities’ employees, with most requiring some form of a job orientation and less than a dozen hours of instruction.

When it comes to staffing, the differences are even more stark. Thirty-eight states leave the amount of personnel needed to care for residents up to individual facility owners.

These variations fuel the position that federal oversight is needed, mainly because it would provide consistency. But there are opponents of the idea who think it will make ALF oversight more bureaucratic and expensive. With Medicaid waivers covering the cost of ALFs in some situations, the argument for federal oversight gains strength. "But because Medicaid’s role is increasing in assisted living, advocates for the elderly say the U.S. Centers for Medicaid and Medicare Services, which oversees nursing homes, should also monitor assisted-living facilities."

The article discusses efforts at the state level of ensure quality of care and offers argument both in favor of and against involvement of the feds.

What do you think?

 

"LATE", a "new" dementia that isn't Alzheimer's

In May, AARP ran a story about research identifying a new dementia that is not Alzheimer's. Is It Alzheimer's ... or LATE? explains about recent results into research of cases that although thought to be Alzheimer's are not. "[A] report published in the medical journal Brain reveals that in cases involving people older than 80, up to 50 percent may, in fact, be caused by a newly identified form of dementia. It's called LATE, which is short for limbic-predominant age-related TDP-43 encephalopathy....The news, published last month, is being heralded as a potential breakthrough, as identifying a new type of dementia could be critical for targeting research — for both LATE and Alzheimer's. In fact, the report included recommended research guidelines as well as diagnostic criteria for LATE." The disease can mimic some aspects of Alzheimer's, the story explains, and it can only be identified in an autopsy.

Here is the abstract from the study:

We describe a recently recognized disease entity, limbic-predominant age-related TDP-43 encephalopathy (LATE). LATE neuropathological change (LATE-NC) is defined by a stereotypical TDP-43 proteinopathy in older adults, with or without coexisting hippocampal sclerosis pathology. LATE-NC is a common TDP-43 proteinopathy, associated with an amnestic dementia syndrome that mimicked Alzheimer’s-type dementia in retrospective autopsy studies. LATE is distinguished from frontotemporal lobar degeneration with TDP-43 pathology based on its epidemiology (LATE generally affects older subjects), and relatively restricted neuroanatomical distribution of TDP-43 proteinopathy. In community-based autopsy cohorts, ∼25% of brains had sufficient burden of LATE-NC to be associated with discernible cognitive impairment. Many subjects with LATE-NC have comorbid brain pathologies, often including amyloid-β plaques and tauopathy. Given that the ‘oldest-old’ are at greatest risk for LATE-NC, and subjects of advanced age constitute a rapidly growing demographic group in many countries, LATE has an expanding but under-recognized impact on public health. For these reasons, a working group was convened to develop diagnostic criteria for LATE, aiming both to stimulate research and to promote awareness of this pathway to dementia. We report consensus-based recommendations including guidelines for diagnosis and staging of LATE-NC. For routine autopsy workup of LATE-NC, an anatomically-based preliminary staging scheme is proposed with TDP-43 immunohistochemistry on tissue from three brain areas, reflecting a hierarchical pattern of brain involvement: amygdala, hippocampus, and middle frontal gyrus. LATE-NC appears to affect the medial temporal lobe structures preferentially, but other areas also are impacted. Neuroimaging studies demonstrated that subjects with LATE-NC also had atrophy in the medial temporal lobes, frontal cortex, and other brain regions. Genetic studies have thus far indicated five genes with risk alleles for LATE-NC: GRN, TMEM106B, ABCC9, KCNMB2, and APOE. The discovery of these genetic risk variants indicate that LATE shares pathogenetic mechanisms with both frontotemporal lobar degeneration and Alzheimer’s disease, but also suggests disease-specific underlying mechanisms. Large gaps remain in our understanding of LATE. For advances in prevention, diagnosis, and treatment, there is an urgent need for research focused on LATE, including in vitro and animal models. An obstacle to clinical progress is lack of diagnostic tools, such as biofluid or neuroimaging biomarkers, for ante-mortem detection of LATE. Development of a disease biomarker would augment observational studies seeking to further define the risk factors, natural history, and clinical features of LATE, as well as eventual subject recruitment for targeted therapies in clinical trials.

The full article is available here as a pdf.

Dementia & the Ethics of Choosing to Die

The Hastings Center has announced a new and very important research project. Dementia and the Ethics of Choosing When to Die will focus on basic issues surrounding an individual's ability to exercise end of life choices when suffering from dementia. As the announcement explains

As the American population ages and dementia is on the rise, The Hastings Center is embarking on pathbreaking research to explore foundational questions associated with the dementia trajectory and the concerns of persons facing this terminal condition. This new research is made possible by a major grant to The Hastings Center from The Robert W. Wilson Charitable Trust as part of its visionary support for the Center’s research and public engagement on ethical challenges facing aging societies.

...

During the dementia trajectory, a person experiences progressive impairment of cognitive abilities – including memory, problem-solving, and language – as well as changes in behavior and physiological functions. As cognition deteriorates, a person with dementia will need daily assistance and eventually total care, often in an institutional setting, for several years before physical deterioration progresses to death from pneumonia or another condition associated with severe dementia. There are no effective treatments to cure or halt the progression of dementia. Alzheimer’s disease, the most common form, is the sixth leading cause of death in the U.S.  Vascular dementia, the second most common form, may develop following stroke.

In 2018, 5.7 million Americans were living with dementia. An estimated 12 million others will be at high risk for developing dementia over the next 30 years as the baby boom generation lives into their 80s and 90s.

In the U.S., the basic legal right to be free of unwanted treatment is long established. People with decision-making capacity have the right to forgo life-sustaining treatment they do not want. People who lack decision-making capacity have the same right through the use of an advance directive or a surrogate decision-maker. However, this longstanding legal framework and ethical consensus does not fully reflect the situation of a person facing dementia if this person has no medical treatments to refuse. Also, the timeframe in which a terminally ill person with decision-making capacity can request and use medical aid-in-dying (MAID), now legal in nine U.S. jurisdictions, does not correspond to the dementia trajectory.

...

Through literature review and workshops, a Hastings Center work group will conduct an ethical analysis of end-of-life choices in the context of dementia, identifying areas where further research or policymaking is needed. In exploring these emerging issues, the work group will also consider how the field of bioethics should contribute to research, policy solutions, and public understanding to improve the experiences of living with dementia and caring for people with the condition. Products will include a special report, to be published in 2021.

“Population aging raises profound questions about how a society values the experiences of aging and caregiving,” says Berlinger. A separate Wilson Trust grant will build on a recent Hastings Center special report to support events and publications on how policymakers, practitioners, and the public can promote inclusion and equity for older adults and caregivers. Learn more about the dementia project and the aging societies project.

Denver's Dementia-Friendly Initiative

A number of cities have undertaken to become dementia-friendly as part of the dementia-friendly America initiative. Denver's efforts are aimed at "improv[ing] the quality of life for people with dementia and their families in the Denver area." The national initiative, started in 2015 is a "grass roots not for profit project [that] is spreading throughout the US with hundreds of cities participating and more joining every month."  The community's efforts are unique to the community and fall within these areas "Business, Legal, Financial, Government, Healthcare, Independent Living, Care Communities, Academia, Community Services, and the Faith Community."

Denver's projects range from community education to resource guides, to recognizing businesses that are making efforts and more.

 

Decision-Making Supports Guardianship Course

The National Center for State Courts has announced the release of a new guardianship course, Finding the Right Fit: Decision-Making Supports and Guardianship.

According to the press release, this interactive on-line course covers

• How to support friends and loved ones in making their own choices about their health, finances, and lifestyle.

• Legal options, including powers of attorney and advance directives. • How to become a guardian.

• How a guardian can support a person’s decision-making.

• Identifying and understanding the risk of abuse, neglect, and exploitation that comes with any of the above options.

The course takes about 2 hours to complete and you have to create an account to access it. Check it out!

Dementia-Friendly Communities

City Lab wrote about an interesting concept whose time is past-due. Dementia-Friendly Cities Prepare for an Aging Populace explains "a movement [that] is growing across the country to create dementia-friendly communities. Business owners, police officers, bank tellers, college students, and others are training to learn to recognize signs of cognitive impairment, and how they can assist someone who is demonstrating impairment." Look at Middleton, Wisconsin, which was part of the leading edge of this trend, starting with "a resolution to become dementia-friendly, working with the Alzheimer’s and Dementia Alliance of Wisconsin. The city trained its employees and more than 50 businesses soon followed." 

Here in the U.S., the efforts  "to create dementia-friendly communities gained traction in 2015 with the launch of Dementia Friendly America at the White House Conference on Aging. Modeled after a successful program in Minnesota, the newly minted initiative announced pilot programs in six cities and communities, among them, Denver." This is no cookie cutter project, although there are some commonalities amongst the various projects.

The article notes that it's hard to measure success of the various projects, with various obstacles, including  "reaching a critical mass of business owners, particularly in larger cities. Also, as many as 40 percent of people living with Alzheimer’s or dementia do not have an official diagnosis—making them, or their caregivers, unlikely to seek out the kind of services or respite care from which they could benefit."

Thanks to my colleague and dear friend, Professor Bauer, for sending me this article.

Using "Games" to Assess Early Stages of Dementia?

Apparently researchers and gamers are collaborating -- on a "game" that could be used to "identify individuals who might have early and mild symptoms of dementia that medical test aren't able to detect."  The game, developed in Germany, and called Sea Hero Quest, reportedly uses virtual reality technology to have a "player" manipulate a virtual boat on a game board.  Players are "given a map and shown checkpoints, then the map is taken away and players must navigate to these checkpoints in the game world without the map."  

Some of the data reported strike me as, hmmm, surprising.  I suspect this game might have greater validity if the players have established, previous skills in using the gaming tools, as well as interest or patience with the technology. There might also be some serious ethical questions for how the "game" is employed as a diagnostic tool.  For more details, read "A Video Game Developed to Detect Alzheimer's Disease Seems to Be Working."  

New Article on Planning for Beneficiaries with Special Needs

Kristen Lewis has published a really great article in the March 2019 issue of Estate Planning Magazine.  Planning Challenges for Beneficiaries With Special Needs. To accommodate adequately the particular circumstances of beneficiaries with special needs, multiple trusts may be required provides a comprehensive discussion of 10 challenges faced by estate planners when a beneficiary has special needs.

Consider the opening of this article

Disabilities do not discriminate based on a family’s socio-economic status. Families of great wealth have children or other beneficiaries with disabilities at the same rate as families of modest means. Estate planning attorneys, and the other allied professionals who serve these families, are no longer able to take the position that “We don’t do special needs planning,” or worse yet, recommend that the child or other beneficiary with a disability simply be disinherited (which is likely grounds for malpractice). A recent study by the Centers for Disease Control and Prevention concluded that the prevalence of Autism Spectrum Disorder (ASD) has risen to one in every 68 births in the U.S. A more recent study concluded that the estimated prevalence of children in the U.S. with a “parent-reported” diagnosis of ASD is now one in 40. The 2010 U.S. Census reported that almost 20% of the U.S. civilian non-institutionalized population claimed to have a disability.  With statistics like these, estate planners and allied professionals must become, and remain, educated about the tools and techniques available to help clients secure the future of beneficiaries with disabilities within the broader context of estate planning. A critical first step is recognizing, and knowing how to overcome, the most common challenges to effective special needs planning. (citations omitted)

Read this article, then save it to your library as a resource.  You will be glad you did!

PS-shameless plug: Mark your calendars for Stetson Law's 2019 Special Needs Planning Institute for October 16-18, 2019. Registration opens July 1. #StetsonSNT2019

 

Broken System(s) and Good People Who Still Care

For those who read this Blog regularly, thank you.  Especially as I have been leaving the bulk of recent postings to my wonderful  blogging colleague and all-round elder law guru, Rebecca Morgan.  Thank you most of all, Becky! 

It is early morning on a Sunday as I type this.  The Arizona sun is not quite above the eastern horizon.  A calm morning after several days ...  okay, I confess, weeks ... of small troubles.  I had time to read The New York Times, and there it is once again, an article with a title and content that seem right on point for what I am pondering:

Patients ‘Hit the Call Bell and Nobody Comes.’ Hospital Nurses Demand ‘Safe Staffing’ Levels.

For the last several weeks, my sister and I have been struggling to understand how best to help our mother in the latest part of her journey with dementia.  Recently she fell twice in single week, when rising before dawn and struggling to get dressed by herself.  She did not need to be up so early, but in a lifetime of early rising, it is hard to change. Learning new routines, such as calling for help, is never easy, but especially so when memory and awareness are impaired by dementia.  Her second fall resulted in what Mom had long feared most, a fear that will resonate for many people.  She fractured her hip, as well as a few annoying ribs.  

This put the three of us, my sister, my mother and me, squarely in the middle of doctor consultations, hospitals, rehabilitation centers, home care agencies and a search for alternatives for care.  Do you have a mental image of Queen Elizabeth in London?  Perhaps you have seen photos or news footage of her in recent weeks, walking with determination and carrying her purse, as she attends to her royal duties?  Well, Queen Elizabeth and our mother are the same age and seem to have very similar abilities to persevere.  We think of our mother as a slightly smaller version of the Queen, perhaps walking a bit slower although with equal commitment to the task, complete with her own favorite handbag.  Or she was until the recent set of events.

At age 93, Mom sailed through surgery to stabilize her fractured hip, and even did pretty well during the first phase of recovery in the hospital.  One small blessing for Mom is that she has no memory of the falls, no recollection of the surgery, and no memory of pain. Thus she's surprised when it "hurts" to try to stand, much less walk.  Of course, both pain and understanding of what pain signifies, are important reminders of the need to take things slow.  

We've done the hospital surgery stay "thing" before with Mom, and we've learned to treat such events as a marathon, rather than a sprint.  We've learned, for example, that our mother's agitation after surgery makes IVs difficult and that any form of narcotic pain medication is likely to trigger days of vivid and disturbing hallucinations. For pain, fortunately tylenol is enough with Mom.  We work hard to come up with a way for someone (usually my sister, until I can fly in) to be there each night, when we know hospital staffing levels can be low and call buttons may not be answered quickly. We know that without being there, when Mom does sometimes complain of pain, we will to need to remind the staff that tylenol is usually sufficient.

We try to rotate nights.  My sister is a pro, and after weeks of my somewhat frantic naps on airplanes, I've become pretty good at falling into a wakeful sleep mode in an upright position.  Staying overnight in a hospital is disorienting for the healthiest person and much more so for someone like my mother who cannot understand why this "hotel" has staff members that keep waking her up at night to take her temperature and hand her medication to swallow.  I will be forever grateful to the nurse who, after my mother spit a full mouthful of water and the medicine back in her face, nonetheless returned promptly to help throughout the third shift, still offering smiles and kind words.  The nurses who advocate for change in The New York Times article have it right -- "safe staffing levels" are one key to sound hospital care; only with adequate staffing can nurses be expected to keep working in such taxing circumstances.

The next decision was about where to go after the hospital. One option presented by the discharge planner was to go to a skilled nursing facility, a/k/a nursing home.  We had previewed a wide range of places and we already had a list of possibilities. But we were pretty confident Mom could tolerate physical therapy, and therefore, after consultation, we opted for a facility that specialized in rehabilitation.  

One complication:  The rehab facility's admissions director said that they were not willing to take someone with dementia unless the family made sure there was 24/7 assistance during periods of confusion and, they emphasized, to keep her from wandering.  With gratitude, we accepted a brochure offered by the admissions director for a local home care agency that they had worked with before.  My sister, a true angel, and I, very much a mortal, knew we couldn't do this alone.

And thus began a strange variation on the "Bell Rings; Nobody Comes" theme of The New York Times article about hospital care.

The first yellow flag was when one of the line staff, a certified nursing assistant (CNA) at the rehab facility, who heard we were hiring companions from an agency, commented, "Well, okay, if you want to do that, but just so you know, these people don't do a darn thing.  They won't lift a finger to help."  I didn't know what to say; I think I said something like, "Well, let us know if there is a problem."

The "problem" emerged quickly.  Companions from the home care agency said the rehab staff were not responding to call buttons when help was needed for our mother.  The rehab staff were complaining that the companions didn't provide any help.   I talked to an administrator at the rehab center.  He assured me that their policy was for staff  to respond promptly to call buttons and that he would remind the staff that a family member or hired companion was doing "the right thing" by using the call buttons to seek help.  

But the reports continued, even as Mom began to recover more function, and thus actually needed more help in key tasks because she was more mobile.  Different companions and even friends reported that the CNAs at the rehab center would, for example, help our mother to the bathroom toilet, but then would refuse to stay until she finished.  Some reported the CNA turning to the agency's companion and saying with disdain, "You should handle it from here."  

I tried talking again with Rehab's administrators, this time the director of nursing.  She was also quick to reassure me that we were not wrong to ask the rehab staff to assist our mother in the bathroom and to remain with her till she finished, as our mother was still unable to rise on her own and also could not or would not use the pull cord.  She thought the most recent report was about one new rehab employee, who may not yet understand his or her role.

But the reports continued.  One report came from a friend visiting Mom.  She noticed buzzers ringing endlessly on Mom's floor, even when available staff were chatting nearby.  I tried talking with the management staff again.  At one point, the home care agency actually swooped in and removed a companion we hired to help our mother, after the rehab center complained to them that the companion was complaining "too loudly" about the rehab staffing and lack of coordination with staff.  In response to the turmoil my sister ended up taking another night shift in rehab (after a long-day as an administrator for a charter school).  I started planning another flight to Arizona.

I slowly began to realize that this was not a problem that could be "fixed" with polite requests or even more directly-worded complaints about staffing roles.   I learned:

• The direct care workers at the rehab center felt seriously over-worked and under-appreciated;
• The rehab center was often short-staffed, especially when employees called off on short notice; 
• The direct care workers resented the agency's companions "doing nothing" when an extra pair of hands, any hands, would have made their work easier;
• There was tension between the direct care workers, most of them CNAs, and the cehab Center's other "higher" staff, including nurses and shift supervisors;
• Family members of other patients were also concerned and confused about what to do about unevenness of care.  They weren't required to have a companion as their loved one did not have the dreaded "dementia." But their need for prompt assistance for loved ones recovering from car accidents, strokes, or major surgery was just as great.

A family member of another patient in rehab commented to me, "This is a broken system."  At first I thought she meant the Rehab Center.  But she clarified.  "This is just one part of a broken care system."  She meant that all of care is a broken system.

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Will There Ever Be A Cure for Alzheimer's?

Two recent stories from the Wall Street Journal on a recent failure of an Alzheimer's drug in testing made me pause. Latest Experimental Alzheimer’s Drug Fails Testing. Drugmakers Biogen and Eisai ended studies of treatment, deeming it unlikely to benefit patients in latest research setback  ("[t]he search for new Alzheimer’s disease treatments hit another big setback on Thursday when drugmakers Biogen Inc. and Eisai Co. said they would terminate two late-stage studies of an experimental drug after determining it would likely fail to help patients") and Where Alzheimer’s Research Is Pushing Ahead. Disappointing results for drugs targeting Beta amyloid buildup in the brain has renewed focus on drugs that act in other ways ("[t]he failure last week of Biogen Inc. and Eisai Co.’s once-promising Alzheimer’s disease drug was the latest in a spate of disappointments for medicines designed to target Beta amyloid, a sticky substance long known to accumulate in the brains of people with the disease...The repeated failure of such drugs are giving greater currency to efforts by academics and smaller biotech companies to better understand the biology of Alzheimer's ....) (subscription required to read both articles) certainly wasn't the headlines we hope for.  Then this article in Time Magazine caught my eye. What the End of a Promising Alzheimer’s Drug Trial Means for One Patient in the Study describes this "failure is the latest in a string of let-downs involving drugs that target amyloid, leading experts to question whether future treatment strategies should focus so heavily on amyloid plaques. Therapies that target some of the other proteins involved in the disease are ongoing, but until recently, the predominance of amyloid in the brains of people affected by Alzheimer’s has led drugmakers to focus on that protein in particular."  The article also summaries different tactics that researchers are considering next, so at least there's still hope. Stay tuned.

CDC Says Dementia Deaths Up

The Atlanta Journal Constitution reported last week that the Rate of dementia deaths in US has more than doubled, CDC says from the new report for the National Center for Health Statistics.

Here is the abstract from the 29 page report from the National Center for Health Statistics:

Objectives—This report presents data on mortality attributable to dementia. Data for dementia as an underlying cause of death from 2000 through 2017 are shown by selected characteristics such as age, sex, race and Hispanic origin, and state of residence. Trends in dementia deaths overall and by specific cause are presented. The reporting of dementia as a contributing cause of death is also described.

Methods—Data in this report are based on information from all death certificates filed in the 50 states and the District of Columbia. Using multiple cause-of-death data files, dementia is considered to include deaths attributed to unspecified dementia; Alzheimer disease; vascular dementia; and other degenerative diseases of nervous system, not elsewhere classified.

Results—In 2017, a total of 261,914 deaths attributable to dementia as an underlying cause of death were reported in the United States. Forty-six percent of these deaths were due to Alzheimer disease. In 2017, the age-adjusted death rate for dementia as an underlying cause of death was 66.7 deaths per 100,000 U.S. standard population. Age-adjusted death rates were higher for females (72.7) than for males (56.4). Death rates increased with age from 56.9 deaths per 100,000 among people aged 65–74 to 2,707.3 deaths per 100,000 among people aged 85 and over. Age-adjusted death rates were higher among the non-Hispanic white population (70.8) compared with the non-Hispanic black population (65.0) and the Hispanic population (46.0). Age-adjusted death rates for dementia varied by state and urbanization category. Overall, age-adjusted death rates for dementia increased from 2000 to 2017. Rates were steady from 2013 through 2016, and increased from 2016 to 2017. Patterns of reporting the individual dementia causes varied across states and across time.

Conclusions—Death rates due to dementia varied by age, sex, race and Hispanic origin, and state. In 2017, Alzheimer disease accounted for almost one-half of all dementia deaths. The proportion of dementia deaths attributed to Alzheimer disease varies across states.