Elder Law Prof Blog

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.

Continue reading

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.

 

Alzheimer's-Changing the Narrative

The Washington Post recently published an article, Changing ‘the tragedy narrative’: Why a growing camp is promoting a more joyful approach to Alzheimer’s. This article examines a different point of view about the disease, "coming at it with a sense of openness, playfulness and even wonder" although there still is a substantial number of folks who take a different approach.  The article explains this different point of view promoted by various experts. "Without dismissing the difficulties of the disease, especially in the late stages, [experts] are promoting a more adaptive approach, which they say can help caregivers and patients alike. It involves a lot of flexibility and willingness to expand one’s ideas of how things are supposed to be — even, crazy though it might sound, to see Alzheimer’s as a kind of gift."

The article highlights several programs that use humor, among other things, to help those with the disease. It is worth reading and our students will find it informative. Check it out.

 

Long Distance Family Caregivers

A new article, published by Professor Naomi Cahn and Amy Zietlow, The Sandwich Generation on Wheels: Tips for Long-Distance Family Caregivers discusses the all too common issue of caregiving from afar.  Based on their respective research and experiences,  they note "that it is helpful for family caregivers to define the "sandwich" layers they face in order to proactively plan for what role they can and should play."  The first layer is what we might analogize to client identification in law practice, that is "clarify who in your older generation depends on you in some way. List your parents, stepparents, in-laws, grandparents, aunts or uncles, etc. In conversation with them, formalize your caregiving role. This is particularly important in stepfamily situation."  With this layer, not only do you identify who needs help, you identify the needed documents but articulate the limitations that arise from long-distance caregiving.  The authors briefly explore the potential for caregiving to help in such situations.

The second layer, "your job, " focuses on caregivers who are employed and how to juggle your job and your caregiving responsibilities.  The third layer, "spouse and child" recognizes the sandwich issue-you have responsibilities to your own immediate family as well as the elders for whom you are caregiving.  "Communicating with your spouse and your children about your goals for this season of life is critical. Acknowledging how you will be dividing your time, and why, will help them feel engaged and involved. You will need their moral support in your role as caregiver."

Thanks to Professor Cahn for sending us this!

 

A Blood Test for Alzheimer's?

CNN ran a story last week about a blood test that detects Alzheimer's. Blood test could detect Alzheimer's up to 16 years before symptoms begin, study says starts with an explanation of the "technical" aspects where the test would "measur[e] changes in the levels of a protein in the blood, called neurofilament light chain (NfL) [which] researchers believe [with] any rise in levels of the protein could be an early sign of the disease..."  The study is in the most recent issue of  Nature Medicine.

This is not a cure, but there are advantages to knowing this far in advance that the person has Alzheimer's.  For starters, as the story notes, it would help with testing of treatments. From a legal point of view, it may encourage more clients to plan. 

Thanks to Professor Naomi Cahn for sending me the link to the story.

 

Housework-It May Be Good for Your Brain!

Hate housework? Well here's a new reason to look forward to it. According to a story on NPR, Daily Movement--Even Household Chores--May Boost Brain Health in Elderly  a recent "study finds even simple housework like cooking or cleaning may make a difference in brain health in our 70s and 80s."

The study looked at 454 older adults who were 70 or older when the research began. Of those adults, 191 had behavioral signs of dementia and 263 did not. All were given thinking and memory tests every year for 20 years.

In the last years of research before death, each participant wore an activity monitor called an accelerometer, similar to a Fitbit, which measured physical activity around the clock — everything from small movements such as walking around the house to more vigorous movements like exercise routines. Researchers collected and evaluated 10 days of movement data for each participant and calculated an average daily activity score.

...

The findings show that higher levels of daily movement were linked to better thinking and memory skills, as measured by the yearly cognitive tests.

The article discusses limitations on the study and the need for more research. In the interim, get out a dust cloth and the broom and start cleaning!

 

Hebrew Home at Riverdale New York: Site for New Report on Medical Marijuana

Last week, I wrote about the possible use of medical marijuana for treatment of anxiety in patients with dementia, pointing to the importance of peer-reviewed studies.  This week, I learned of a new study on the use of medical marijuana at a nursing home, and when I read the study I was not surprised to learn the study had occurred at Hebrew Home at Riverdale in New York, a location I have come to associate with both research and thoughtful innovation.  Studies of medical marijuana are complicated by the disjunction in federal and state laws governing purchase and use.

From a study published in JAMDA, the official journal for the Society of Post-Acute and Long-Term Care Medicine, this description in a press release:  

In “Medical Cannabis in the Skilled Nursing Facility: A Novel Approach to Improving Symptom Management and Quality of Life,” the authors described a medical policy and procedure (P&P) they implemented at their New York-based SNF for the safe use and administration of cannabis for residents with a qualifying diagnosis. To be compliant with state and federal statutes, policy requires that residents must purchase their own cannabis product directly from a state-certified dispensary.

 

After the program started in 2016, the facility provided educational sessions for residents and distributed a medical cannabis fact sheet that was also made available to family members. To date, 10 residents have participated in the program and seven have been receiving medical cannabis for over a year. Participants range in age from 62 to 100. Of the 10 participants, six qualified for the program due to a chronic pain diagnosis, two due to Parkinson’s disease, and one due to both diagnoses. One resident is participating in the program for a seizure disorder.

 

Most residents who use cannabis for pain management said that it has lessened the severity of their chronic pain. This, in turn, has resulted in opioid dosage reductions and an improved sense of well-being. Those individuals receiving cannabis for Parkinson’s reported mild improvement with rigidity complaints. The patient with seizure disorder has experienced a marked reduction in seizure activity with the cannabis therapy.

This study did not address cannabis as a treatment for symptoms of dementia-related anxiety.  For more, see Medical Cannabis in the Skilled Nursing Facility:  A Novel Approach to Improving Symptom Management and Quality of Life, published January 2019.  Interestingly, the authors are a medical doctor, Zachary J. Palace, and Daniel Reingold, who lists both a Masters of Social Work and a J.D. for his background. 

Relearning Basic Skills When Suffering with Dementia

There's no cure for Alzheimer's but according to a recent article in the New York Times, Dementia May Never Improve, but Many Patients Still Can Learn individuals with dementia can be taught certain forgotten skills. Known as "cognitive rehabilitation", "[t]he practice brings occupational and other therapists into the homes of dementia patients to learn which everyday activities they’re struggling with and which abilities they want to preserve or improve upon."  It's important to realize that this training won't reverse the decline from the disease, but instead "the therapists devise individual strategies that can help, at least in the early and moderate stages of the disease. The therapists show patients how to compensate for memory problems and to practice new techniques."  But, and this is important, the therapy can make a huge difference for folks with dementia---the "researchers have demonstrated that people with dementia can significantly improve their ability to do the tasks they’ve opted to tackle, their chosen priorities. Those improvements persist over months, perhaps up to a year, even as participants’ cognition declines in other ways."

Another approach being used in the U.S., the "T.A.P. program includes more patients with serious cognitive loss than cognitive rehab does. And it takes a somewhat different tack: T.A.P. aims to reduce the troubling behaviors that can accompany dementia: repeated questions, wandering, rejecting assistance, verbal or physical aggression" with the study showing "the frequency of such behaviors decreased compared to a control group, allowing family members to spend fewer daily hours caring for patients."

This is important research-read this article!

Medical Marijuana for Treatment of Dementia Agitation

Months ago, when my family was considering alternatives for care of my mother as her health deteriorated and her home became increasingly unsafe, I was talking with different providers about the challenges of care when the individual is a heavy smoker (as my mother, at age 92, still was at the time).  There are few options, and most licensed facilities bar smoking completely or limit it to locations that are not workable for someone with impaired movement.  I joked with one provider that smoking cigarettes was prohibited but that Arizona had recently authorized medical marijuana.  Arizona Statutes Section 36-2801 permits medical marijuana for those with debilitating medical conditions, including "agitation of  alzheimer's disease." 

The provider laughed and said, "oh, we don't permit smoking of marijuana either." I wasn't up-to-date on the technology!  Apparently the preferred dispensation at that location was via "gummies."  If you google "marijuana gummies" you get a remarkable range of products.

In this brave new world of medical marijuana, I can see reasons for the interest, especially in the search for safe and effective ways to help individuals whose form of dementia is marked by severe agitation.  Can marijuana "take the edge off" in a safe way?  Can doses be monitored and evaluated appropriately?  Do "gummies" provide reliable or consistent doses of the active ingredient, most likely THC?  Can there be an associated positive effect -- improved appetite (the proverbial "munchies")?  Are there reporting mechanisms on the effects of use, especially in facilities that provide dementia care, that will help capture success rates and any risks?  What about individuals with dementia who suffer from both agitation and delusional thinking -- could medical marijuana potentially reduce one symptom but increase another?  Is the CDC tracking medical marijuana gummies or other products in the context of dementia care?  

The National Conference for State Legislatures (NCSL) maintains a website on state medical marijuana laws.  NCSL reported that as of 11/8/18, 33 states, plus D.C., Guam and Puerto Rico, have approved "comprehensive" public medical marijuana programs, with additional states allowing limited use of "low THC, high CBD" products in limited situations that are not deemed comprehensive medical marijuana programs.

In January 2017, the National Academies of Sciences, Engineering, and Medicine released a report based on review of "over 10,000 scientific abstracts" for marijuana health research, offering 100 conclusions related to health and ways to improve research. The conclusions are organized according to whether there is "conclusive or substantial" evidence, moderate evidence, or limited evidence about effectiveness or ineffectiveness of medical marijuana in a variety of contexts.  One conclusion suggests there is limited evidence that cannabis or cannabinoids are effective for "improving anxiety symptoms," while a separate conclusion states there is limited evidence that such substances are ineffective for "improving symptoms associated with dementia."  

I'm relatively new to review of literature associated with medical marijuana for dementia care/treatment, and welcome hearing from others who are aware of authoritative sources of information. (And just to be clear, this isn't a product we're considering for my mother!) I can see this topic becoming more important with time in our aging world, especially as additional sources of dementia-treatment evidence may become available. 

Signs of Our Times?

Walking through a grocery store last weekend, I noticed this interesting combination of magazines on display:

President Signs BOLD Infrastructure for Alzheimer's Act -- $100M Funding

On December 31, 2018, the President signed S. 2076.  The bill, with the somewhat unwieldy title of "Building Our Largest Dementia Infrastructure for Alzheimer's Act" or "BOLD Infrastructure for Alzheimer's Act," was approved in the Senate by a voice vote on December 12  and by the House on a vote of 361 to 3.  The law amends portions of the Public Health Code (at 42 U.S.C. Section 280c) to increase funding and restate priorities related to Alzheimer's and related dementias.  The funding authorized in the last provision of the law if for "$20,000,000 for each of fiscal years 2020 through 2024."  As one of my colleagues, administrative law guru Professor Matthew Lawrence reminds me, implementation of the new law will also likely require Congressional approval with an appropriations bill (or bills).  

The scope of this bill is, shall we say, broad.  It is not necessarily about funding research into causes or cures for dementias.  New language in the bill directs the Secretary of Health and Human Services to award grants, contracts or cooperative agreements with eligible entities (which includes "institutions of higher education") for the establishment or support of regional centers to "address" Alzheimer's and related dementias by:

    (A) advancing awareness of public health officials, health care professionals and the public on current information and research related to dementias,

    (B) identifying and translating promising research finding into evidence-based programmatic interventions for both those with dementia and their caregivers,

    (C) expanding activities related to Alzheimer's disease, related dementias and associated health disparities.

Other portions of the legislation seek to improve state and federal reporting and analysis of data on the incidence and prevalence of dementias; in addition, a section of the bill is directed to programming by state public health officials or agencies, with a 30% state matching fund requirement (unless the matching would cause "serious hardship").  

Senators Tim Kaine (D-VA) and Susan Collins (R-ME) were two of the primary sponsors of the legislation, which reportedly received support from "183 organizations and individuals, including the Alzheimer's Association, Alzheimer's Impact Movement and Maria Shriver, founder of The Women's Alzheimer's Movement."

 

Thinking about New York Time's Article on Guardianships and One Woman's Personal Story

For anyone working in legal fields where adult guardianships may be an option, for anyone teaching elder law, health care law, constitutional law or even landlord-tenant law, a recent New York Times article, "I'm Petitioning . . . for the Return of My Life," is an important read.

On a threshold level, this is a well-told tale of one woman, Ms. Funke, who becomes subject to an intervention under New York adult protective services law, and, eventually, to a full-blown guardianship proceeding.   It can be easy to become enraged on behalf of Ms. Funke as you read details about her past life as a freelance journalist and world traveler, and compare it to the limitations placed on her essential existence under a guardianship. 

The article is a rather classic example of using one tragic story, a human story, to paint a picture of a government process gone wrong.  At several points in the article, the writer, John Leland, offers questions that suggest some conclusions about how unfair the process has been to Ms. Funke.  The writer asks, for example, 

"If you were Ms. Funke, shouldn't you be allowed to withdraw into the covers [of your bed] if you wanted to?  And the clutter in your apartment -- couldn't people understand that a writer needs materials around?  Even if she were evicted, she had money to start somewhere else.  Courts evict people with lots less [than she appears to have]. " 

It's implied that the answers to those questions may outweigh the fact that the protective services intervention prevented the landlord from completing an eviction of Ms. Funke, an eviction that would have forced her out of her apartment of 40+ years.    

Other, less dramatic details in the article suggest that for every Ms. Funke, there may be other people -- an unknown number of people in New York -- who are also very alone and who have also lost control over their lives because of physical frailty, mental decline, depression or other facts, and who are rescued with the help of a protective services intervention. Sometimes the intervention interrupts the decline, usually with the help of family member or friend who volunteers to help, sometimes acting with a measure of authority under a power of attorney, making a guardianship unnecessary. 

The challenge, of course, is knowing when to help (and how far to go), and when to preserve the  individual's right  to make choices that appear unsafe.  Some of the most complex cases involve people who have spent a lifetime on a unique and often solo path, and now have few family members or friends to help them as that path becomes rockier with age or illness, especially when they have no plan for the future.  In the face of such facts, as one person interviewed in the article observes, guardianships are a "blunt instrument."

Something I wrote about last week also figures into the New York situation -- the apparent absence of a guardianship case tracking or monitoring system.  

But another issue I'm concerned with is also suggested.  At one point, an interview with one of Ms. Funke's guardians, a so-called professional (in other words, not a family member or a public guardian) discloses he does not know how far his authority as guardian extends.  For example, would he be allowed to prevent her from marrying?  He responded, he did not know.

It would seem that guardians and other agents, alleged incapacitated persons, -- and family members -- could all benefit from greater information, and to ongoing education on their rights, duties and options.  That was also a theme emerging from article asking the question  "Where's Grandma?" that I linked to last week and that I link to again here.    

My thanks to the several folks who suggested this New York Times article for discussion on our Blog, including my Dickinson Law colleague, international human rights expert, Dermot Groome.    

The Importance of Guardianship Tracking Systems (and a related CLE Program!)

I've been a bit busier than usual lately and haven't felt I could take the time to Blog regularly even though I'm constantly seeing intriguing topics to discuss.  I'm buried in a manuscript with a looming deadline!  Fortunately, I'm seeing that Becky Morgan is keeping everyone updated and I've been benefiting from her regular reports.  I hope to get back to daily posts of my own by January.  

In the meantime, I can report on a smaller, interim task of  serving as a co-presenter for a half-day Continuing Legal Education program at the Pennsylvania Bar Institute on  new developments in Guardianship Practice and Procedure on Friday, December 7.   Among the important developments, the Pennsylvania Courts is nearing completion on its statewide implementation of a Guardian Tracking System or GTS.  In 2014, the Supreme Court's Elder Law Task Force strongly recommended adoption of such a system, having determined just how little was actually known across the state about open guardian cases.  Implementation of the new system began with a pilot in Allegheny County in July 2018.  As of today, 60 counties are "live" in the system.  The remaining 7 counties are scheduled to be included by the end of this month.

With the help of the new tracking system, I learned that we currently have more than 14,000 active guardianships in Pennsylvania.

Key features of the GTS system include:

• Automation:  a means of automatically running a process to check specific aspects of guardianship reports for missing information or other concerns;
• Flagging:  when a concern is detected, the item is automatically flagged, allowing court personnel to review and respond to the potential problem;
• State-wide Court Communications: providing the court system with a means of immediate and cost-effective state-wide communications whenever a judge in one case is alerted to suspicion of neglect or other improper conduct by a guardian; and
• Alerts on Specific Guardians:  when an "alert" is triggered on a specific guardian in one case, the system will generate notices to all of the other courts in the state, alerting them to the potential need for action on that individual in their cases.  

Such a system required entirely new software, new reporting forms, and new court rules to make implementation effective.  We will be talking extensively about the new rules and forms on Friday.  The migration  from the older system of record-keeping imposes a huge learning curve on many involved in guardianship matters, including lawyers.

The need for better systems in Pennsylvania has been highlighted during the last year of controversies surrounding appointment of one particular individual as guardian for alleged incapacitated persons in three Pennsylvania counties.  She is accused of mismanaging cases, plus it turned out she had a criminal history for fraud in another state. 

See also the recent news reports about another Pennsylvania guardianship matter that asks the troubling question "Where's Grandma?" The  reporter on this case, Cherri Gregg, who also happens to be a lawyer, opines that everyone in the case, including the lawyer appointed as guardian, and the family members of the person subject to the guardianship, needed better education about their roles after the grandmother's own children passed away, as the grandmother became more vulnerable, and especially when it became necessary to place her in a nursing home.  

My special thanks to Karen Buck, Executive Director of the SeniorLAW Center in Philadelphia, and the good folks at Pennsylvania Courts' Office of Elder Justice for helping me with my part of the presentation for Friday!

SNF Silver Tsunami Hitting Texas?

A recent article mentioned that the number of elders in Texas who will need SNF care is going to be a "silver tsunami."  The Houston Chronicle published this article, Silver Tsunami set to hit Texas nursing homes where the article acknowledges "[m]ore than 12 percent of the Texas population is over 65, and that number is growing. According to the Texas Demographic Center, the over-65 population across the state is projected to increase by more than 262 percent by 2050." But it is more than the numbers creating this "silver tsunami: the impact is magnified "by the increasingly complex medical conditions — such as Parkinson’s and Alzheimer’s — of aging Texans needing nursing home care. According to data from the Alzheimer’s Association “2018 Texas Facts and Figures,” more than 380,000 of the state’s residents have already developed Alzheimer’s disease or other dementia. In Texas, Alzheimer’s is the sixth leading cause of death, and its prevalence is expected to increase by almost 30 percent by 2025."

The article also highlights the fact that in many instances the caregivers themselves will be elders.

We all need to be planning ahead.....

Decline in US Life Expectancy

U.S. life expectancy has declined. What's up with that? According to an article in the Washington Post, this is not good news for us. U.S. life expectancy declines again, a dismal trend not seen since World War I emphasizes the impact of the opioid and suicide crises.

The data continued the longest sustained decline in expected life span at birth in a century, an appalling performance not seen in the United States since 1915 through 1918. That four-year period included World War I and a flu pandemic that killed 675,000 people in the United States and perhaps 50 million worldwide.

The U.S. trend seems to be opposite of what is happening in other countries, and although the decline may not seem very large, it is still part of an overall concerning trend. The numbers re: opioid deaths cited in the article are shocking. Read the article to absorb the data and look at the geographical info detailing where opioid deaths are highest and lowest.  It's just not drug deaths attributing to the decline. "Other factors in the life expectancy decline include a spike in deaths from flu last winter and increases in deaths from chronic lower respiratory diseases, Alz­heimer’s disease, strokes and suicide. Deaths from heart disease, the No. 1 killer of Americans, which had been declining until 2011, continued to level off. Deaths from cancer continued their long, steady, downward trend."