Thursday, May 14, 2020

"Hey, how about giving it a rest, Bro?" -- The Importance of Achieving Consensus in Family Care Giving

Earlier today I had a conversation with someone about family dynamics during the Covid-19 crisis in the context of caring for elderly family members.  The caller is the one who holds Power of Attorney for her older family member and who has been doing a lot of tough stuff, including care decisions for more than an year, decisions such as whether assisted living was appropriate, whether the beloved (but annoying) cat can go to assisted living with the family member, whether the larger family will somehow find a way to pay for a single occupancy room when the resident's own finances aren't enough, and whether the family member's increasing dementia will require additional one-on-one support, also requiring additional money.  

But the call wasn't about any of those complicated parts of third-party decision-making challenges.  It was about "can I tell my brother to back off? He's driving me crazy. He's 600 miles away from here. On the one hand he says, its up to me to make the decisions; on the other hand, when he hears from [our loved one] about being unhappy, he tells me what I should have done. Why didn't he say that before I had to make a decision?" 

And then, not ten minutes after that conversation, I talked with a friend who is a director at a long-term care facility.  She told me about how a big blowup occurred, because an adult child of one of their residents "found out" about the parent's Covid-19 diagnosis because of Facebook.  The adult child called the director, upset about not hearing this information directly.  The director, staying calm, tried to explain that the decisions about timing of communication on this topic were made by the resident's spouse -- and suggested the child call the spouse for more details.  That in turn resulted in the spouse calling the director, in tears, about what the child had said.  

So, perhaps in any context of long-term care, we all need to recognize that caregiving decisions are complex, fact specific, often requiring quick action.  If the person who is the center of the care, the one who is loved (right?),  and about whom the family is worrying, has made his or her own decisions about who is the Power of Attorney or other agent, we just need to take a deep breath before we criticize.  

Or as one person wrote to me, in still another caregiving context, he was lucky he was "not having to navigate this alone," because he, his brother and sister were working hard to use their respective backgrounds (medicine and law) to strive for family consensus when called upon to make tough decisions for their parents.  But when consensus isn't possible -- and that will happen -- he knew that one or more of them might have to "give it a rest" with well-meaning, post-decision advice.  

 

 

May 14, 2020 in Advance Directives/End-of-Life, Cognitive Impairment, Current Affairs, Dementia/Alzheimer’s, Ethical Issues, Health Care/Long Term Care, Housing | Permalink | Comments (0)

Elder Abuse in the Time of COVID

A reporter recently asked me whether I'd been hearing about an uptick in elder abuse cases during the pandemic. So I was interested in the release of this research letter, Elder Abuse in the COVID-19 Era.

Consider this: "[t]he many necessary social distancing programs currently in place additionally create a growing dependency on others for the completion of daily living activities, and this dependency can be viewed as another vulnerability. The documented negative health effects of social isolation and loneliness in old age will undoubtedly intensify during this pandemic, and social isolation has been established as one of the strongest predictors of elder abuse."

Add to that the following:

With numerous “shelter-in-place” orders in effect to promote social distancing during the COVID-19 era, and increased dependency of older adults on others, the potential for elder abuse is all the more heightened, particularly since perpetrators of abuse are often close relations, and as more strangers opportunistically strive to take advantage of the fearful situation to exploit older adults for financial gain. Older adults with dementing illness are known to be of higher risk for abuse and neglect. With the shuttering of adult daycare programs, senior centers, and outpatient programs occurring concomitantly with adult children working from home, the possibility of unbuffered time together may contribute to circumstances leading to greater incidents of abuse.(citations omitted)

The authors offer suggestions to minimize the potential for instances of elder abuse in the time of COVID-19, which need to be

proactively addressed with organized, systematic, and creative efforts. Older adults within families and local communities can be contacted on a regular basis by those who are designated as advocates. Multiple communication methods can be leveraged for this purpose, ...  Creativity in the development of resources to address specific vulnerabilities should be encouraged. …

Ways to address the potential threat of a trusted other range from increasing penalties for elder abuse at the societal level to the creation of an individualized safety plan that incorporates the wishes and preferences for autonomy and self-reliance of the older adult. Caregivers of older adults with dementia or other medical conditions … should be offered additional means of support and guidance. To combat rampant and increasing ageism, the perspective of older adults can be elevated by increasing representation on panels with significant decision-making power in public and private sectors during the pandemic. Those who have a substantial social media footprint can be of particular help combating ageist sentiments. Creative community-based resources that address any of these three intersecting domains of elder abuse must be rapidly developed and implemented. ….

May 14, 2020 in Cognitive Impairment, Consumer Information, Crimes, Current Affairs, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship | Permalink | Comments (0)

Monday, May 11, 2020

Professor Nina Kohn's Important Op-Ed in the Washington Post

Syracuse Law Professor Nina Kohn (currently a visiting professor at Yale Law), has an important Op-Ed in the Washington Post, in which she tackles the not so subtle ageism that accompanies response to COVID-19 -- while making it clear that the issues are much deeper than a single disease.  She writes:

Of course, older adults are at heightened risk, even though covid-19 strikes younger people, too. But across America — and beyond — we are losing our elders not only because they are especially susceptible. They’re also dying because of a more entrenched epidemic: the devaluation of older lives. Ageism is evident in how we talk about victims from different generations, in the shameful conditions in many nursing homes and even — explicitly — in the formulas some states and health-care systems have developed for determining which desperately ill people get care if there’s a shortage of medical resources.

For more, read The  Pandemic Exposed a Painful Truth:  American Doesn't Care About Hold People.  The subtitle?  "We speak of the elderly as expendable, then fail to protect them."

May 11, 2020 in Consumer Information, Current Affairs, Dementia/Alzheimer’s, Discrimination, Elder Abuse/Guardianship/Conservatorship, Ethical Issues, Health Care/Long Term Care, Statistics | Permalink | Comments (0)

COVID-19 Resources for Guardians

With stay at home orders and LTC facilities prohibiting outside visitors, how do guardians discharge their duties?  The National Guardianship Association (NGA), along with the ABA Commission on Law and Aging, and the National Center for State Courts have compiled a list of useful resources for guardians, available here, along with a list of FAQs for guardians about serving in the time of COVID-19. The FAQ list is available here.   Here are the top points from this 11 page FAQ

Top Take-aways
• Access to My Clients or Loved One in Nursing Homes – While federal guidance restricts in person visits to residents in nursing homes, you have a responsibility to maintain contact and monitor well-being through remote access.
• Access to My Clients or Loved One in Residential Groups Settings and Hospitals -- State requirements may restrict in-person visits to residents in residential group settings, and federal guidance sets limits on visits to hospital patients, but you have a responsibility to maintain contact and monitor well-being through remote access.
• Access to Courts – Each state determines its own procedures during the pandemic. While many are placing a priority on keeping courts open for cases involving the protection of vulnerable individuals, hearings may be delayed or conducted remotely, and there may be changes in requirements for timelines, notices and the submission of reports.
• Protecting My Clients’ or Loved One’s Rights and Well-Being – The rights of your client or loved one have not changed, but the pandemic makes it more difficult to exercise certain rights. Take actions to ensure the person receives fair health care treatment, facilities follow safety protocols, and support the individual during this difficult time.

 

May 11, 2020 in Consumer Information, Current Affairs, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship, Health Care/Long Term Care, State Cases, State Statutes/Regulations | Permalink | Comments (0)

Friday, April 24, 2020

Transparency Issues in Long-Term Care: The Potential for Misuse of Confidentiality Policies to Hide Infection Facts from the Public

Recently I was talking with a friend in another state who is the director of an assisted living facility that largely serves older adults who have significant risks factors.  I asked, "Have you had any residents or staff members that have tested positive for COVID-19?"  I asked her directly, because there was no way to know the answer to that question from public websites, either in her state or on a national basis.  The good news was that her facility had had no such diagnoses, either among staff or residents.  I also asked what she felt was key to avoiding infections, and we talked about the rates uncovered in other facilities in her own state.  She said bluntly, "We learned from our experience with influenza the last two years that we had to make real changes, and we did so before the COVID-19 was a reality and doubled down when we started hearing about the coronavirus." 

Internal infections have long-been a documented problem in residential care settings, and certainly not limited to so-called "nursing homes."  Contributing factors include residents who may have physical or mental conditions that make self-protection difficult and perhaps impossible.  My sister and I used to struggle mightily with a family member whose dementia interfered with the simple task of hand-washing -- even though this same person was the one who taught us the importance of soap and water from the time we were small children. It is perhaps ironic to recall that as a horse-mad girl I had tried to persuade both of my parents that there should be an exception for "barn dirt," on my theory that horse-related dirt was "clean dirt."  My mothers still insisted I undress on the back porch and wash thoroughly before coming in for dinner.  Wise woman, one who was quick to dismiss utter nonsense.

Fast forward decades and every day I hear new arguments regarding why facilities that have experienced life-threatening infections should not be required to report this in a public venue.  The most problematic argument is one that says an individual's infection is confidential medical information that prevents the facility from reporting statistical information, and thus an infection cannot be made public.  I've seen arguments about federal or state record-keeping policies such as HIPPA privacy rules or Pennsylvania's confidentiality rules  as the rationalization.  I think I know what my mother would call this kind of argument.

Syracuse Law Professor Nina Kohn tackles the history of mishandled safeguards against infections in long-term care with an Op-Ed for The Hill. In "Addressing the Crisis in Long-Term Care Facilities," Professor Kohn  points to specific actions at the federal level that have weakened, rather than strengthened, potential safeguards.   She makes five specific recommendations, including prohibitions on staff working in more than one-long-term care facility, to reduce cross-contamination, and the need for family members and others to make it clear that we "are paying attention to what is happening."  She reminds us:  "Those who are health care agents for nursing home residents should not be afraid to request access to medical records, as federal law entitles them to do, if facilities are not forthcoming with information about the care being provided."

April 24, 2020 in Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Ethical Issues, Health Care/Long Term Care, Housing, Medicaid, Medicare, State Statutes/Regulations, Statistics | Permalink | Comments (0)

Monday, April 20, 2020

Journal of Elder Policy Calls for Papers related to COVID-19, Policy and Older Adults

Our friend Professor Naomi Cahn at George Washington Law has advised us that the peer-reviewed Journal of Elder Policy is planning a special issue related to COVID-19.  Certainly the implications of policy in this pandemic are constantly in the news, and how appropriate to begin the process of analysis. 

Abstracts of 500 words are due by June 15, 2020.  Full papers of between 8,000 and 10,000 words are due by September 30, 2020.

Topics may include but are not limited to:

  • Risk assessment, Ageism, Legislation to protect older adults,
  • Community initiatives, Medical and nursing perspectives,
  • Mental health challenges for elders, Family support or conflict,
  • Helping and volunteering, Rationing of care, Challenges for caregivers

Authors should send their Vita and a 500 word abstract related to their paper by June 15 to Managing Assistant Editor, Kaitlyn Langendoerfer.  Details available here. 

The ever-busy Naomi is a member of the Editorial Board for the Journal.  Thank you for letting us know about this opportunity, Naomi!

April 20, 2020 in Advance Directives/End-of-Life, Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship, Ethical Issues, Grant Deadlines/Awards, Health Care/Long Term Care, Programs/CLEs, Science, Statistics | Permalink | Comments (0)

Friday, April 17, 2020

How COVID-19 is Revealing a Transparency Dilemma in Long-Term Care

My students at Dickinson Law often suggest important law and aging issues to explore and certainly the COVID-19 crisis is a daily source of topics.  High on the list in my students' minds have been the tragic stories connected to diagnosis and prognosis of the disease in "nursing homes."  Sometimes it is hard to even keep up with the stories.  Consider these headlines from the last few weeks:

When my sister and I first realized that the novel coronavirus was likely to have a devastating impact on anyone with a compromised immune system, we quietly and sadly acknowledged our minor relief that our parents, who had both experienced dementia in the final months before their deaths, were spared at least this particular situation.   My sister went further and said, "If this had happened while Mom or Dad were still alive, I would have quit my job to apply for a job in their living center.  I wouldn't have been able to live with being forced to stay away, in essence abandoning them."

Anyone who knows my sister would know that would have been her heartfelt plan.  But it was also a reminder of something we knew so well from our experiences.  Even the very best of care settings -- whether in the individual's home, in assisted living, in supported independent living (such as in a CCRC), or in a skilled nursing facility -- need a loved-one's involvement.  On the one hand, the cared-for individual "lights up" when they see a family member arrive, even if the visit is just for a few minutes and even if the older person cannot quite remember the identity of the visitor.  No activity-based care program can entirely reproduce that positive impact.

But even the best facility also benefits from having the eyes and ears of family members to observe and make appropriate reports about concerns.  On my last sabbatical,  I stayed in Arizona to be near both of my parents, in their 90s.  Mom was still in the family home and Dad was in a truly caring, small, personal and well-staffed dementia care center.  One day I arrived to find my father deeply upset.  He said "I can't find my room."  I was worried that this meant his cognition had taken another turn for the worse. But, when I offered to walk him from his favorite outdoor bench to his room, it turned out he was right.  Everything that was once his -- his favorite chair, his clothes, his photographs -- were gone from his room.  I found out they were on their way to a different cottage.  More distressing, it was a cottage for individuals who no longer left their rooms -- and that wasn't my father's profile at all.  Suffice it to say, that "move" was reversed.  

That's a small example.  But when a pandemic means that family members cannot visit at all -- the opportunities for confusion and short cuts can increase in any care setting.  I don't know what the solution is; but I do know that the need for transparency in care, and for family members to feel welcome every day in every care setting, are important to quality of care.  And, of course, to quality of life for everyone.  

I'm hopeful that the COVID-19 pandemic will stimulate creativity and identify new ways of safely maintaining relationships for frail elders or others with delicate health profiles, while also still taking appropriate precautions to reduce the potential for high rates of cross-contamination and infection, including infections that cross the borders of the setting.  On my father's last full day, before a nighttime stroke left him in a coma, he and I had lunch together, we walked in the sunshine, and he had his favorite ice cream for a snack.  How I would hate to think of others missing such opportunities.  

April 17, 2020 in Cognitive Impairment, Current Affairs, Dementia/Alzheimer’s, Ethical Issues, Health Care/Long Term Care, Housing | Permalink | Comments (0)

Wednesday, March 25, 2020

The Challenges for the Newest Sandwich Generation

The interesting thing about the sandwich generation is that your position changes over time. Boomers at one time were  the "filling" and now are one of the slices of the bread. What about the family caregivers for the boomers? They're now the filling. And they face their challenges.  This Washington Post article, published before the sweep of the Corona virus changed the conversation, predicts greater challenges for them. The ‘sandwich generation’ quandary was hard on baby boomers. It’s going to be harder on their kids acknowledges how individuals age into their placement within the sandwich generation:

 
The boundaries of this cohort are blurry and perpetually shifting; when the term was first coined by social worker Dorothy Miller in 1981, she referred specifically to 30- or 40-something women — baby boomers or members of the Silent Generation — who were caregivers for both children and aging parents. Now, 40- and 50-something Gen Xers make up the heart of the sandwich generation (which includes men and women), but the baton will pass again soon: The oldest millennials turn 40 next year, notes Kim Parker, director of social trends research with the Pew Research Center. 
And because millennials have waited longer to have children than prior generations, they are even more likely than their predecessors to find themselves balancing care for even younger children and aging parents....
Since some X'ers waited to have kids, their situation gives the Millennials a preview of sorts and discusses the "sandwich pressures" which occur to the caregivers.  We have always had this multi-generational caregiving relationship, but now it seems to be taking on a different emphasis:
There has always been the cycle of growing children and aging grandparents, and the stresses that can result from caring for either or both. But as more parents trend toward starting their families later, the widening distance between the generations — child, parent, grandparent — is changing the nature of the dynamic among all three.
The recommendations for the caregivers strike a similar tone for those given to those of us self-isolating, including making time for yourself, connecting with your friends, communicating with your family and remembering that "showing up for the people you love is always the right thing to do."

March 25, 2020 in Consumer Information, Current Affairs, Dementia/Alzheimer’s, Grant Deadlines/Awards, Health Care/Long Term Care | Permalink | Comments (0)

Monday, March 16, 2020

Social Distancing = Social Isolation = Social Recession?

We are all too aware of the pandemic and now we need to recognize that the impact can be beyond whether someone tests positive for the virus. VOX ran this timely article, Coronavirus will also cause a loneliness epidemic: "[t]he rapid implementation of social distancing is necessary to flatten the coronavirus curve and prevent the current pandemic from worsening. But just as the coronavirus fallout threatens to cause an economic recession, it’s also going to cause what we might call a “social recession”: a collapse in social contact that is particularly hard on the populations most vulnerable to isolation and loneliness — older adults and people with disabilities or preexisting health conditions."  Referring to the impact as "social damage." the article discusses the potential for harm to certain vulnerable groups (think elders) as we practice this isolation from one another.

“Social isolation has been associated with a significantly increased risk of premature mortality from all causes,” the report found, including a “50 percent increased risk of developing dementia,” a “29 percent increased risk of incident coronary heart disease,” a “25 percent increased risk for cancer mortality,” a “59 percent increased risk of functional decline,” and a “32 percent increased risk of stroke.” The mental health risks are also profound. The researchers reviewed dozens of studies and found a consistent relationship between social isolation and depression, anxiety, and suicidal ideation.

Expect a decline in one's social health, the article warns. It offers some suggestions, such as where possible, going for a walk outside or having a picnic rather than dinner in a crowded restaurant, increase virtual communications, in particular phone calls or even better, video chats.  Of course, it's possible, the article notes, that those most vulnerable may not have access to or the ability to video chats.

So while you're self-quarantined, use the time to make calls to those who you would otherwise visit.  Consider how else you might reach out to those elders, to help mitigate the social recession.

March 16, 2020 in Consumer Information, Current Affairs, Dementia/Alzheimer’s, Health Care/Long Term Care | Permalink | Comments (0)

Tuesday, March 10, 2020

ACTEC Journal Call for Papers

ACTEC (American College of Trusts & Estate Counsel) is devoting a volume of its Journal to Elder Law!  Here's the info about the call for papers.

The American College of Trust and Estate Counsel announces a Call For Papers on the following topic:

With an aging generation of Boomers and increasing estate tax exemptions, the practice and study of trusts and estates may be driven less by tax planning and more by a host of other issues confronting an older population. Those issues may be broadly grouped under the term "Elder Law."

A special issue of the ACTEC Law Journal will be devoted to a discussion of the intersection of Trusts and Estates and Elder Law and will be comprised of brief articles (2,000 word maximum). The conception of Elder Law is broad and intended to encompass all matters of legal concern that a trusts and estates lawyer might address for an aging client – or a client who is concerned about aging. Suggested topics include retirement planning, financial planning and wealth management, guardianship, disability and medical care, end-of-life planning, incapacity, powers of attorney, health care proxies, nursing homes and long-term care planning, special needs trusts, Medicare, Medicaid, Social Security, elder abuse (physical or financial), age discrimination, family succession planning, grandparent visitation rights, and classic core trusts and estates topics like wills, trusts, intestacy, probate administration, and nonprobate transfers.

Procedure for proposals: Authors wishing to contribute to this special volume should send a brief proposal to Professor Alyssa A. DiRusso, Editor, ACTEC Law Journal, at aadiruss@samford.edu. Please include “ACTEC Elder Law” in the subject line of your e-mail.

Proposals are due by April 1, 2020. Early submissions are encouraged as proposals will be reviewed on a rolling basis. Given the brevity of each article, articles that delve into one or two topics in detail will normally be preferred over more general articles. We encourage submissions by authors from a variety of backgrounds, including those actively involved in fiduciary administration or the practice of law.

Final articles will be due by August 1, 2020 and will be published in the ACTEC Law Journal, Volume 46 Issue 1.

March 10, 2020 in Consumer Information, Current Affairs, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship, Estates and Trusts, Federal Statutes/Regulations, Health Care/Long Term Care, Medicare, Other, Social Security | Permalink | Comments (0)

Tuesday, March 3, 2020

Worried You Will End Up With Dementia? You Aren't Alone.

A couple of weeks back, the New York Times ran a story that I suspect rings true for many of us. Stalked by the Fear That Dementia Is Stalking You discusses the reaction many of us have when we forget something-whether a name or the location of our keys.

"Many people ... who’ve watched this cruel illness destroy a family member, dread the prospect that they, too, might become demented. The lack of a cure or effective treatments only adds to the anxiety. It seems a common refrain, the news that another treatment to stop Alzheimer’s has failed."  The article discusses the tests that screen for the disease and the wisdom of getting tested when someone from your family had the disease. After discussing the various testing methods, the article reviews recommendations from the experts. "Several experts recommend that people concerned about their Alzheimer’s risk get a baseline set of neuropsychological tests, followed by repeat tests if and when they start experiencing worrisome symptoms."  Others suggest "physical inactivity, hearing loss, depression, obesity, hypertension, smoking, social isolation, diabetes and low education levels raise the risk of dementia. All of these factors are modifiable." 

When there is no cure (yet) would you rather know, or not?

March 3, 2020 in Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Health Care/Long Term Care | Permalink | Comments (0)

Tuesday, February 18, 2020

Sneakers for Mom---With GPS Tracker

One of my students sent me the recent article about sneaker insoles with built-in GPS. I always talk to my students about the various technologies, including tracking devises, and ask them to think about autonomy, privacy, consent, and product reliability.  Shoe with GPS insole lets you track loved ones with Alzheimer's or dementia explains how the device works, the info provided and the real-time data provided (in this case, the article notes the product updates the data every 5-10 minutes).  One customer was quoted along the lines that the use of the product allows her mom to wander, but that the daughter can catch up to mom, before harm befalls mom.  I was thinking about this.... it still allows mom to be mobile but I still would like to think more about privacy, data security, consent and more. This, of course, is not the only type of tracking device available to families who have elders who may wander. I've not had any experience with them, but on its face sounds like it may allow the elder to stay at home or have some freedom. (but what can happen before the location is updated or the family even checks for an updated location). Anyone have experiences with any tracking devices for elders who wander?

February 18, 2020 in Consumer Information, Current Affairs, Dementia/Alzheimer’s, Web/Tech | Permalink | Comments (0)

Thursday, January 30, 2020

Hot Off the Press: 2019 Updates on Guardianship Legislation

The American Bar Association Commission on Law and Aging has released their annual update on guardianship legislation,  State Adult Guardianship Legislation Summary: Directions of Reform2019 .

Here's the introduction of the Summary:

This 2019legislative summary reviews approximately 58enactmentsfrom 33states,as compared with 29 enactments from 18 states in 2018. An earlier version of this 2018 legislative summary [January August] was published as part of the National Guardianship Association’s 2019 NGA Legal and Legislative Review, presented at the 2019 NGA National Conference. States were active on a variety of fronts, enacting a variety of significant changes to guardianship laws.Washington became the second state, after Maine in 2018, to adopt the Uniform Guardianship, Conservatorship, and other Protective Arrangements Act (UGCOPAA). Without adopting UGCOPAA in its entirety, Nevada and New Mexico enacted certain provisions of the model law.Iowa and Mississippi also included sections from UGCOPAA in sweeping statutory reforms.To rebuild its probate code, the Virgin Islands adopted five uniform laws Nonprobate Transfer on Death, Real Property Transfer on Death, Disclaimer of Property Interest, Custodial Trust, and Partition of Heirs.Texas and New Mexico established new programs to address guardianship abuse. Texas founded a guardianship abuse, fraud, and exploitation detection program to review guardianships and identify issues, work with courts to develop best practices, and report concerns of potential abuse, fraud, or exploitation. New Mexico created a grievance procedure, which includes mandatory court review, for complaints against guardians and conservators. Indiana, North Dakota, Nevada, and Rhode Island recognized supported decision-making agreements, bringing the total to nine states that have made these agreements legally enforceable since 2015. The acts are not uniform;provisions such as governing who may serve as a supporter, the scope of the supporter’s duties, and indemnification of third parties vary among the state statutes. Since 2011, states have enacted a total of approximately 328 adult guardianship billsranging from a complete revamp of code provisions to minor changes in procedure. Most of these statutory changes have advanced guardianship reform by safeguarding rights, addressing abuse, and promoting less restrictive options. The real challenge lies in turning good law into good practice.

The prior summaries, dating back to 2013, can be accessed here.

January 30, 2020 in Consumer Information, Current Affairs, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship, State Statutes/Regulations | Permalink | Comments (0)

Wednesday, January 29, 2020

Hot Off the Press: 2019 Updates on Guardianship Legislation

The American Bar Association Commission on Law and Aging has released their annual update on guardianship legislation,  State Adult Guardianship Legislation Summary: Directions of Reform2019 .

Here's the introduction of the Summary:

This 2019legislative summary reviews approximately 58enactmentsfrom 33states,as compared with 29 enactments from 18 states in 2018. An earlier version of this 2018 legislative summary [January August] was published as part of the National Guardianship Association’s 2019 NGA Legal and Legislative Review, presented at the 2019 NGA National Conference. States were active on a variety of fronts, enacting a variety of significant changes to guardianship laws.Washington became the second state, after Maine in 2018, to adopt the Uniform Guardianship, Conservatorship, and other Protective Arrangements Act (UGCOPAA). Without adopting UGCOPAA in its entirety, Nevada and New Mexico enacted certain provisions of the model law.Iowa and Mississippi also included sections from UGCOPAA in sweeping statutory reforms.To rebuild its probate code, the Virgin Islands adopted five uniform laws Nonprobate Transfer on Death, Real Property Transfer on Death, Disclaimer of Property Interest, Custodial Trust, and Partition of Heirs.Texas and New Mexico established new programs to address guardianship abuse. Texas founded a guardianship abuse, fraud, and exploitation detection program to review guardianships and identify issues, work with courts to develop best practices, and report concerns of potential abuse, fraud, or exploitation. New Mexico created a grievance procedure, which includes mandatory court review, for complaints against guardians and conservators. Indiana, North Dakota, Nevada, and Rhode Island recognized supported decision-making agreements, bringing the total to nine states that have made these agreements legally enforceable since 2015. The acts are not uniform;provisions such as governing who may serve as a supporter, the scope of the supporter’s duties, and indemnification of third parties vary among the state statutes. Since 2011, states have enacted a total of approximately 328 adult guardianship billsranging from a complete revamp of code provisions to minor changes in procedure. Most of these statutory changes have advanced guardianship reform by safeguarding rights, addressing abuse, and promoting less restrictive options. The real challenge lies in turning good law into good practice.

The prior summaries, dating back to 2013, can be accessed here.

January 29, 2020 in Consumer Information, Current Affairs, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship, State Statutes/Regulations | Permalink | Comments (0)

Thursday, January 16, 2020

Forgetfulness is Not Just for the Old

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

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

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

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

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

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

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

January 16, 2020 in Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Other | Permalink | Comments (0)

Thursday, December 12, 2019

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

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

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

 

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

 

Moreover, competence is issue specific.  Some physicians who misconstrue competence to be a global, black or white issue will ask psychiatric consultants for a broad consultation on whether the patient is competent or not.  The response of the psychiatric consultant should be, "Competent for what?" Poster 12.11.19 Cardozo Maimonides   

 

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

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

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

December 12, 2019 in Cognitive Impairment, Current Affairs, Dementia/Alzheimer’s, Health Care/Long Term Care, State Cases | Permalink | Comments (1)

Wednesday, December 11, 2019

Blood Test for Alzheimer's?

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

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

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

 

December 11, 2019 in Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Science | Permalink | Comments (0)

Tuesday, December 3, 2019

Stories About Alzheimer's

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

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

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

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

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

December 3, 2019 in Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Health Care/Long Term Care, Medicaid, Medicare | Permalink | Comments (0)

Friday, November 15, 2019

Two Recent Articles About Dementia

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

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

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

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

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

 

November 15, 2019 in Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Health Care/Long Term Care, Other, Science | Permalink | Comments (0)

Friday, November 8, 2019

New Resources on Elder Abuse

Maybe it's just me, but there seems to be a lot of items in the news of late about elder abuse. Here are some new tools to add to your toolbox in the fight against elder abuse. The National Center on Elder Abuse (NCEA) and National Asian Pacific Center on Aging (NAPCA) have released 3 new fact sheets:

  1. Six Ways to Care for Yourself When Caring for Someone with Dementia 
  2. NAPCA: Emotional Abuse and
  3. NAPCA: Neglect

All of the fact sheets are available in several languages and are added to an extensive library of fact sheets.

 

November 8, 2019 in Consumer Information, Crimes, Current Affairs, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship | Permalink | Comments (0)