Wednesday, July 21, 2021
Elizabeth Moran, a relatively new staff attorney for the ABA's Commission on Law and Aging, has an interesting article in the latest issue of Bifocal, Vol. 42, Issue 6 (July-August 2021). Moran outlines several key recommendations made by the National Guardianship Network during their May 2021 national Summit. She points to two of the 22 recommendations that bear on "effective communication" for persons with disabilities, especially when involved in court proceedings that may affect any determination of "legal capacity."
Recommendation 1.2 advocates for courts and state authorities "must ensure that all judicial proceedings" that can impact a determination of an adult's legal capacity must provide "meaningful due process" which includes respect for the individual's "preferred communication accommodations."
Recommendation 2.4 provides that federal and state authorities "should recognize that supported decision-making can be a reasonable accommodation under the Americans with Disabilities act of 1990, as amended, in supporting an individual in making their own decisions and retaining their right to do so."
Moran acknowledges there is weak understanding within some courts for how supported decision-making will work, even as she advocates strongly for its use. She writes:
While there is growing awareness of “supported decision-making” (SDM), particularly as an alternative to guardianship, SDM does not have a universally accepted legal definition. It is, however, becoming a more commonly understood concept of integrated supports which honors an individual’s integrity of choice with the underlying principle that, with enough appropriate supports and services, nearly every individual has the capacity to make decisions. When people use SDM as a communication accommodation, they use family members, friends, professionals, and others they trust and who know them well to help them understand the situations and choices they face, but with the ultimate choice left to the adult. This eliminates a substitute decision-maker and maximizes autonomy for the individual who may need communication supports for speaking, reading, writing, or understanding in order to meaningfully participate. The need for this kind of support necessarily includes and can provide for meaningful participation in court services, programs and activities.
For more on this important topic, read Moran's full piece, "Something to Talk About: Supported Decision Making and Access to Justice for All."
July 21, 2021 in Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship, Ethical Issues, Federal Statutes/Regulations, State Statutes/Regulations | Permalink | Comments (0)
Monday, July 19, 2021
UVA Law Professor Naomi Cahn: Why Conservatorships Like the One Controlling Britney Spears Can Lead to Abuse
Prolific writer Naomi Cahn, who in 2020 moved from George Washington to University of Virginia School of Law as a distinguished professor and director of UVA's Family Law Center, has a new commentary on the potential impact of the Britney Spears' litigation challenging her California-based conservatorship. Professor Cahn observes at the outset:
Spears’ case is unusual: Conservatorships are typically not imposed on someone who doesn’t have severe cognitive impairments, and Spears has toured the world, released four albums and earned US$131 million, all while deemed legally unfit to manage her finances or her own body.
Despite the unique circumstances of Ms. Spears' circumstances, her case demonstrates the lack of national data tracking such "protective" proceedings. Professor Cahn writes:
Broad powers and “anemic” oversight make conservatorships subject to multiple forms of abuse, ranging from the imposition of unnecessary restrictions on the individual to financial mismanagement. Nothing can be done if no one finds out about the abuse.
A 2010 U.S. government report identified hundreds of allegations of physical abuse, neglect and financial impropriety by conservators. Most of them related to financial exploitation, and that, in turn, often meant that the victim’s family was affected, losing not just expected inheritances but also contact with the person subject to the conservatorship.
A 2017 New Yorker article on abusive guardians highlighted the case of April Parks, who was sentenced to up to 40 years in prison for financial conduct related to numerous conservatorships she handled. She was also ordered to pay more than half a million dollars to her victims.
But beyond these anecdotes, no one even knows the magnitude of the problem. That’s because conservatorships are subject to state law, and each state handles the imposition of them as well as data collection differently. And a 2018 Senate report found that most states are unable to report accurate data on conservatorships.
Professor Cahn sees Britney Spears' case as generating a national outrage that was missing from earlier anecdotal indications of problems for older adults trapped in "protective" proceedings. She concludes:
Spears may soon find herself free of her conservatorship. Regardless, her situation has already put a spotlight on the potential for abuse – and it may lead to a better system for those who genuinely need the assistance.
Loss of Empathy and How Such Changes Affect Caregiving Relationships (and Can Inadvertently Affect Law-Related Matters)
During the pandemic, as our caregiving relationships have probably become more intense because of the physical restrictions on travel, socializing, eating out, etc., I've had time to observe and think more about "empathy." For several years, even before Covid-19 changed social patterns, I've heard friends and family members who are serving as caregivers talk about frustrations they are experiencing with "their" older persons, not just because of increasing physical needs, but because of changes in personality. While a loved one's confusion and memory problems are typically associated with Alzheimer's Disease and other neurocognitive impairments, I also notice how often the caregivers can "forgive" the problems associated with those domains, but are enormously impacted if their loved one no longer is "nice" or no longer seems to be interested in, or cares about others' moods or needs.
Loss of empathy is a documented phenomenon in aging generally, and in neurocognitive impairments specifically. At the same time, loss of empathy seems to be rather weakly studied, or perhaps, more accurately, rather weakly understood.
Brief excerpts from a review of some recent literature on loss of empathy:
- "Early loss of empathy is one of the core symptoms of behavioral-variant frontotemporal dementia (bvFTD), which is often diagnosed when people are in their 50s. In contrast, empathy remains relatively intact in people with Alzheimer's disease (AD). People with bvFTD are often unaware of the impact of their behavior on others, causing strain in close relationships. The  study conducted by NeuRA researcher Dr Muireann Irish, found that both the ability to understand other people's emotions (cognitive empathy) and to share in other people's feelings (affective empathy) were decreased in people with bvFTD. People diagnosed with Alzheimer's however, retained the capacity for affective empathy." (from a 2016 report by NeuRA, an independent, not-for-profit research institute based in Sydney, Australia).
- "The question of how aging impacts empathy has important implications for public health because reduced empathy has been associated with greater loneliness, depression, and poorer relationship satisfaction. Socioemotional selectivity theory ... highlights the importance of emotional meaning for older adults, and this typically takes the form of spending time with close others. Thus, if older adults experience decreases in empathy, this could have a significant, negative impact on their well-being." (from Preliminary Conclusions: State of the Research on Empathy in Aging, in Janelle Beadle and Christine E. de la Vega's article on "Impact of Aging on Empathy: Review of Psychological and Neural Mechanisms" published 2019 in Front Psychiatry).
How do changes in empathy impact decision-making, including decisions about pre-death gifts and post-death bequests? If differences in the ability to empathize with others are associated with a disease process, should that mean that any corresponding change in gifting could (or should) be legally impacted? Is loss of empathy a component of reduced legal competency or legal capacity?
Monday, July 12, 2021
The California Bar has asked for input on Proposed Formal Opinion Interim No. 13-0002 (Client with Diminished Capacity). According to the announcement
Proposed Formal Opinion Interim No. 13‑0002 considers: What are the ethical obligations of a lawyer for a client with diminished capacity?
The opinion interprets rules 1.0.1(e), 1.1, 1.2, 1.4, 1.6, 1.7, and 8.4.1 of the Rules of Professional Conduct of the State Bar of California; Business and Professions Code section 6068(e).
The opinion digest states: A lawyer for a client with diminished capacity should attempt, insofar as reasonably possible, to preserve a normal attorney client relationship with the client, that is, a relationship in which the client makes those decisions normally reserved to the client. The lawyer’s ethical obligations to such a client do not change, but the client’s diminished capacity may require the lawyer to change how the lawyer goes about fulfilling them. In particular, the duties of competence, communication, loyalty, and nondiscrimination may require additional measures to ensure that the client’s decision-making authority is preserved and respected. In representing such a client, a lawyer must sometimes make difficult judgments relating to the client’s capacity. Provided that such judgments are informed and disinterested, they should not lead to professional discipline. In some situations, the client’s lack of capacity may require that the lawyer decline to effectuate the client’s expressed wishes. When the lawyer reasonably believes that the client’s diminished capacity exposes the client to harm, the lawyer may seek the client’s informed consent to take protective measures. If the client cannot or does not give informed consent, the lawyer may be unable to protect the client against harm. A lawyer representing a competent client who may later become incapacitated may propose to the client that the client give advanced consent to protective disclosure in the event that such incapacity occurs. If appropriately limited and informed, such a consent is ethically proper.
At its meeting on October 23, 2020, and in accordance with their procedures, the State Bar Standing Committee on Professional Responsibility and Conduct tentatively approved Proposed Formal Opinion Interim No. 13-0002 for a 90-day public comment distribution. Subsequently, at its meeting on June 11, 2021, COPRAC revised the opinion in response to public comment and approved Proposed Formal Opinion Interim No. 13-0002 for an additional 60-day public comment distribution.
The text of the proposed opinion is available here.
Republished July 19 to correct error in title.
Seems like a good time to remind everyone of the fabulous resource from the ABA Commission on Law and Aging, Assessment of Older Adults with Diminished Capacities: A Handbook for Lawyers, 2nd Edition. It's a must have for every attorney's library.
Thursday, July 1, 2021
You may recall that the President proposed an increase in home care funding. But, Biden's pledge to boost home caregiver funding excluded from infrastructure deal.
Because the federal government does not require states to provide these benefits for all those who qualify, nearly 820,000 older or disabled Americans were on state waitlists for Medicaid’s home- and community-based services in 2018, according to a Kaiser Family Foundation study published last year. Many rely on family members for their most basic needs, including bathing, getting dressed and taking medication. Without outside help, their family members often struggle to balance caregiving with work and face the enormous challenge of keeping their loved ones safe.
Amid the growing need, President Joe Biden vowed to eliminate these waiting lists during his campaign and originally proposed to inject $400 billion into these programs through the massive infrastructure bill currently under debate in Congress. Republicans, however, have blasted the effort to include “human infrastructure” in the bill, and Democratic leaders excluded the funding from the deal that the White House struck on Thursday with a bipartisan group of senators. Biden has pledged to pursue money for caregiving in a separate, far larger bill that could potentially pass with Democratic votes alone, but that is far from guaranteed.
The need is great and the wait is long, according to the article.
Without greater support, the number of vulnerable Americans who can’t access paid care at home will continue to rise, experts and advocates say, given the aging population, pandemic-fueled fears of nursing homes, and a growing shortage of workers, deterred by Medicaid’s low pay rates and tough working conditions. That means more families could be left scrambling to patch together care for their loved ones at home, not knowing if their number on the waiting list will come up or if they will be able to receive care when it does.
Add into the mix worker shortages and we are facing a critical situation. Although not included in the infrastructure bill, Democrats on Thursday introduced a bill "to expand eligibility and access to Medicaid home- and community-based services, helping states reduce waitlists and increasing pay and benefits for home health workers. Democrats can pass certain spending bills without Republican votes, but would need support from every member of their razor-thin Senate majority, and 10 Democratic senators have yet to sign on to the new home care bill."
Wednesday, June 30, 2021
A number of years ago, I had an email correspondence going with Dr. Jason Karlawish, Professor of Medicine, Medical Ethics and Health Policy, and Neurology at the University of Pennsylvania. He was writing and speaking in intelligent, understandable ways about complex issues in degenerative neurocognitive disorders.
My sister brought him back to my attention, as she had just heard Brené Brown's podcast interview with Dr. Karlawish. Dr. Karlawish recently published an important book on The Problem of Alzheimer's. I immediately ordered the book and I'm still reading, but I can tell this is -- and should be -- an important resource for anyone trying to understand or explain the Alzheimer's or other progressive impairments in cognition. Frankly, that means all of us. He is taking on an essential question: "What's a good life when you're losing your ability to determine that life for yourself?" The subtitle of the book helps explain the scope: "How science, culture, and politics turned a rare disease into a crisis and what we can do about it."
I'm sure I'll write more hear about this book as I plunge ever deeper into the clear prose, organized in logical chunks, where I'm finding "gold" embedded on every page. It is not a soothing read, but that is exactly why it is so important.
June 30, 2021 in Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship, Ethical Issues, Health Care/Long Term Care, Statistics | Permalink | Comments (0)
Tuesday, June 22, 2021
Richard Kaplan, elite elder law professor and friend, sent me the link to this recent article from the Wall Street Journal, One Family’s Lessons Learned From a Decade of Caregiving.
As do many families, the spouse committed to caring for his spouse with dementia.
The family learned much along their decade-long caregiving journey, about setting up trusts, getting help in the home and respecting each other’s decisions. They think about a few things they would have done differently. And they found that caregiving, while relentless and heartbreaking at times, can also be rewarding.
Being a family caregiver is one of the most difficult jobs and one that nearly everyone will have at some point. An estimated 42 million people in the U.S. provide unpaid care to those 50 and older, a 14% increase since 2015, according to the Caregiving in the U.S. 2020 report by the National Alliance for Caregiving and AARP.
Each family is different, and what works for one family may not work for another, says ... [the] chief executive of the National Alliance for Caregiving. Family members don’t always agree about when to call in hospice or sell a house, but it’s important to be supportive, she says. “The hardest thing to say is, ‘It’s not the choice I would make, but I want to honor their choice.’ ”
The story is heartfelt, and compelling. The caregiver spouse offers this advice as to what changes he would have made.
He would have gone to an elder-law attorney earlier to make sure their assets were in a trust that would better protect them from having to be spent down to qualify, if needed, for Medicaid’s coverage of long-term care costs.
And he would have bought a single-story patio home within walking distance of their church and shopping center when [his spouse] suggested it 20 years ago. “It was what [she] wanted to do, but I wanted the yard. My own little domain. I wish I would have,” he says. “Here I am now with this big house, by myself. I’ll probably reach a point where I can’t take care of it.”
Knowing how hard it is to provide hands-on care, and not wanting to be a burden, he recently told his daughters, “Just put me in a nice place. You don’t have to do what I did for mom. You don’t have to take me into your house. I don’t want that.”
I'm assigning this reading to my students. Thanks Professor Kaplan!
June 22, 2021 in Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Estates and Trusts, Federal Statutes/Regulations, Health Care/Long Term Care, Housing, Medicaid | Permalink | Comments (0)
Thursday, June 10, 2021
The CEO for Biogen, the publicly-traded biotechnology company that developed Aduhelm, issued a statement about the company's policies and plans for the new drug in conjunction with the FDA's announcement of its accelerated approval of the drug for patients with Alzheimer's Disease. He writes in part:
The approval of ADUHELM represents a crucial inflection point in our collective battle against Alzheimer’s disease. By addressing a defining pathology of the disease, this novel therapy has the potential to help fundamentally change the way patients are diagnosed and treated.
I have hoped for years that we would reach a moment like this. We all know the staggering numbers: there have been at least 100 drug development programs discontinued since 2003—the last time a new Alzheimer’s drug was approved. What it tells us is that the path for innovation is not straightforward, especially for something as complex as Alzheimer’s research. The journey during Biogen’s many years of research and development has been humbling, but we have learned from industry’s past research efforts and been determined to follow the science, always driven to address patients’ unmet needs.
ADUHELM is a first-in-class approved therapy: I believe it will be the catalyst to a new era of innovation for Alzheimer’s disease, and the first of many new treatments available to patients. More resources will be drawn into research that can help patients through the disease continuum, explore new pathways, and find potential therapy combinations.
The use of this drug involves some important questions about patient consent, precisely because the drug will most likely be used with people who have "confirmed presence of amyloid pathology and mild cognitive impairment or mild dementia stage of disease, consistent with Stage 3 and Stage 4 Alzheimer’s disease," the group of patients who took part in the pre-approval clinical trials. What is the process for obtaining such consent with cognitively-impaired patients?
Several articles have explored this topic outside of the specific drug in question:
In England, the nonprofit organization Physiopedia, offers a detailed protocol for informed consent in the context of cognitive impairment. For example, it suggests assessment of competence involves paying attention to four main abilities:
The person must have sufficient capacity to understand the information. If the study involves a considerable degree of risk, more information must be provided, particularly about possible risks and benefits, and the potential participant must be able to understand such information.
The person must be able to retain, use and weigh up such information long enough to be able to make a decision. In addition, they must also be able to understand what the decision is about, why they are being asked to make it, and what the consequences of making or not making that decision might be.
Possible benefits, risks and inconvenience linked to participating in research must be understood and weighed against the person’s own values and goals, which means that the person must understand how participating might affect him/her personally (High, 1992 and Stanley et al., 1984 in Olde Rikkert et al., 1997).
The person must have the ability to communicate his/her decision.
See also: "Informed Consent in Two Alzheimer's Disease Research Centers: Insights from Research Coordinators," by Christin M. Suver, and others, published April-June 2020, and announcing the plan to use the research to assist in development of "an electronic informed consent (eConsent) designed to boost engagement, enhance trust, and improve understanding by supporting participants' direct agency in the IC process."
Tuesday, June 8, 2021
I used to follow (and regularly blog about) new drugs in the pipeline for Alzheimer's treatment. Then I realized that the drugs weren't making it to the market place. While attending medical programs about R & D, I learned that it was going to be tough to find any magic treatments, much less "cures."
To it was interesting to read this week that for the first time in some 18 years, the FDA has approved use of a new drug, with the marketing name Aduhelm and the generic name Aducanumab (kind of sounds like abracadabra, doesn't it?), manufactured by Biogen.
Aduhelm is described by the FDA as an "amyloid beta-directed antibody," which was approved under an "accelerated approval pathway," to give "patients suffering from a serious disease earlier access to drugs when there is an expectation of clinical benefit despite some uncertainty about the clinical benefit of the drug."
But there is a lot of sobering news accompanying this announcement:
First, the mechanism of delivery: monthly intravenous infusions, which means a clinical visit lasting at least an hour per infusion.
Second, Biogen's own predictions about cost: a "list price" predicted to average $56,000 per year per patient! Yikes.
Third, the critical response from a range of experts in relevant research, pharmacy and health fields about the approval process to date, indicating a history of interruptions in the clinical trials when preliminary results showed little to no evidence of clinical benefit.
Fourth: the need for assessment before the first infusion with an MRI, plus recommended follow up MRIs prior to the 7th and 12th infusions, to assess the potential for ARIA-H, which are amyloid-related abnormalities, also potentially associated with edema in the brain.
Here are some links (and I'll try to keep this list up-to-date as new info comes in):
STAT's commentary, dated June 7, 2021 on FAQs: What You Need to Know about the Alzheimer's Drug Aduhelm
New York Times, dated June 8, 2021: FDA Approves Alzheimer's Drug Despite Fierce Debate Over Whether it Works
June 8, 2021 in Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Ethical Issues, Federal Statutes/Regulations, Health Care/Long Term Care, Medicare, Science, Statistics | Permalink | Comments (0)
Friday, May 21, 2021
Long-Term Care in America: Americans Want to Age at Home covers recent poll results about long term care.
In the wake of a pandemic that was especially devastating for nursing homes, the vast majority of Americans want to age at home and want government action to help them do so, according to a new study from The Associated Press-NORC Center for Public Affairs Research.
Even as concerns about the safety of nursing homes decline as more and more COVID-19 vaccines are administered, 88% of Americans would prefer to receive any ongoing living assistance they need as they age at home or with loved ones. Just 12% want to receive care in a senior community or nursing home. With that objective of aging in place in mind, more than 6 in 10 support a variety of policies that would facilitate aging at home including a government-administered long-term care insurance program, similar to Medicare.
Here are three highlights from the poll
Three Things You Should Know About The Long Term Care Poll on Aging at Home
Among Americans Adults:
1) 88% would prefer to receive any ongoing living assistance they need as they age at
home or in a loved one’s home
2) 51% think Medicare should have a large responsibility for paying for ongoing living
assistance, and 49% expect to rely on it to pay for care they need as they age.
3) 53% have already received health care at home during the pandemic through telehealth
The full report is available here.
Thanks to Morris Klein for sending me the article.
Sunday, May 16, 2021
The ABA Journal recently ran an article, As the legal profession ages, dementia becomes an increasing concern. "There is no comprehensive information about how often ethics officials and lawyer assistance programs deal with lawyer dementia, according to Bloomberg Law. But the percentage of lawyers older than age 65—about 14%—is higher than the 7% of workers generally in that age group, suggesting that the problem could be worse in the legal profession." The article discussed the potential difficulty for identifying lawyers who may have dementia as well as the variety of state requirements regarding the obligation to notify the disciplinary authority of an attorney who may have dementia. ABA ethics opinion 03-429 is discussed, as well as the Illinois story of Robert Fritzshall.
May 16, 2021 in Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Ethical Issues, Legal Practice/Practice Management, State Statutes/Regulations | Permalink | Comments (1)
Sunday, May 9, 2021
Published recently in the New York Times, She Bought a Truck on eBay, Then Forgot It. A Dementia Diagnosis Came Later. discusses how a lack of financial capacity may be an indicator of dementia.
[M]oney troubles aren’t unusual among people who are beginning to experience cognitive decline. Long before they receive a dementia diagnosis, many people start losing their ability to manage their finances and make sound decisions as their memory, organizational skills and self-control falter, studies show. As people fall behind on their bills or make unwise purchases and investments, their bank balances and credit rating may take a hit.
The isolation that came from COVID may have allowed a number of cases to go undetected, since there wasn't the same level of interaction with folks. "Many older people have remained isolated from loved ones who might be the first to notice unpaid bills or unopened bank notices." Check out the finding from one of the studies mentioned in the aticle
Another study, published in JAMA Internal Medicine in November, used data on Medicare claims and from the Federal Reserve Bank of New York/Equifax Consumer Credit Panel to track people’s credit card payments and credit scores. The study found that people with Alzheimer’s and related dementia were more likely to miss bill payments up to six years before their diagnosis than were people with no diagnosis. The researchers also noted that the people whose dementia was later diagnosed started to show subprime credit scores 2.5 years before the others.
Read this article---it's important!
Tuesday, May 4, 2021
I've had several recent opportunities to talk with individuals serving as primary caregivers for family members who have varying stages and types of neurocognitive disorders, including but not limited to age-associated dementia. One common concern in these conversations has been "that could have been my family member."
They are referring to news reports and body-cam videos of two officers in Loveland, Colorado in June 2020, as they apprehended, handcuffed, and took down "in a controlled manner" (the officers' description) a disoriented 72-year old woman. The officers were intent on arresting the woman following a report of her alleged "shoplifting" attempt of $14 dollars' worth of items at a local Walmart.
According to the federal civil rights suit filed on April 16, 2021, the actions of the police officers fractured Karen Garner's left arm, dislocated her shoulder, and terrified her. She was left for hours, crying and begging to go home while handcuffed in a booking cell, with no medical assistance offered or provided. One booking room video shows the officers laughing and commenting about the body-cam footage.
Such conversationa explained what many caregivers were thinking about when they learned what happened to the "frail little thing" (the officer's word), the 5 foot tall, 80 pound woman who had earlier been diagnosed with "mild" dementia:
- It could have been a lawyer's uncle, who has PTSD following return from tours of military duty and an IED injuty in Afghanistan;
- It could have been a colleague's father, who was diagnosed with FTLD causing him to lose inhibitions, sometimes involving confusing behavior in public;
- It could have been an older friend who recently needed help because she could not find her way through the "new" self-checkout system at the grocery store;
- It could have been a member of my family, as my sister related to me a story I had not heard before, about how our mother, distracted by a cell-phone call, walked out of a grocery store without paying for groceries and didn't realize that until after she had loaded them into her car;
- It "was" a man in his 60s with early onset dementia who wandered away from his home one night, only to be arrested for loitering and placed in a special containment area of the jail, where he was beaten to a pulp during the night by his cellmate (as I have written about before, here).
May 4, 2021 in Cognitive Impairment, Crimes, Current Affairs, Dementia/Alzheimer’s, Discrimination, Elder Abuse/Guardianship/Conservatorship, Estates and Trusts, Ethical Issues, Federal Cases, Federal Statutes/Regulations, Health Care/Long Term Care, State Cases | Permalink | Comments (1)
Monday, April 19, 2021
The National Consumer Coalition for Quality Long Term Care announced the release of a podcast, The Care For Individuals With Dementia. Here's a description of the podcase.
When the needs of residents living with dementia are met, incidences of resident stress are significantly reduced. Practicing person-centered approaches and interventions increase the likelihood that the message being communicated by the resident will be heard and addressed, leading to better outcomes and more satisfaction for the individual. In this episode of the Pursuing Quality Long-Term Care podcast, Dr. Jonathan Evans and Lori Smetanka of Consumer Voice talk about caring for human beings with dementia.
The podcast can be accessed here.
Monday, April 12, 2021
If you haven't seen this yet, check out the new website, Alzheimers.gov. This site compiles a significant amount of great info. As the website explains
Alzheimers.gov is the federal government portal to information and resources on Alzheimer’s disease and related dementias, including Lewy body dementia, frontotemporal disorders, and vascular dementia. Alzheimers.gov is managed by the National Institute on Aging (NIA) at the National Institutes of Health (NIH), a part of the U.S. Department of Health and Human Services (HHS). HHS is the U.S. government’s principal agency for enhancing the health and well-being of all Americans.
. . .
A primary goal of Alzheimers.gov is to connect people to the many federal resources available to educate and support people whose lives are touched by these devastating diseases in their various roles. Whether you are living with dementia, a family member or friend, health care provider or other health care professional, researcher, or advocate, Alzheimers.gov is designed for you.
. . .
Tuesday, March 16, 2021
Check out this new factsheet from the National Center on Elder Abuse, Role of Guardian Standards
in Addressing Elder Abuse. This five page fact sheet answers 16 wide-ranging FAQs and includes resources both within some of the FAQs and at the end of the fact sheet. It's worth checking out!
Thursday, March 4, 2021
Two articles that bear reading, both from the New York Times.
First, an op-ed We Are Going to Keep You Safe, Even if It Kills Your Spirit’ in the New York Times, examining the impact of COVID and isolation on folks with dementia. This is an important read. The article highlights the challenges for those individuals and mask-waring and social distancing, as well as how the disruption of their routines impacts them.
People with dementia “may not adequately comprehend, execute, or recall any of the suggested public health measures,” as the Alzheimer’s Association puts it. Also, it’s not possible to social-distance when you live in a nursing home, as about 15 percent of people with dementia do, and when you need help eating and going to the bathroom.
Even those who stay free of the virus have suffered disproportionately from the disruptions of pandemic life. Dementia responds well to routine: rigid, time-blocked schedules and familiar faces. But the pandemic has shown us, and warned us, how quickly the fragile channels of dementia care — the muddled blend of formal and informal networks that sustain those routines — can collapse under strain.
Second, another New York Times article, People With Dementia Are Twice as Likely to Get Covid, Huge Study Finds
People with dementia had significantly greater risk of contracting the coronavirus, and they were much more likely to be hospitalized and die from it, than people without dementia, a new study of millions of medical records in the United States has found.
Their risk could not be entirely explained by characteristics common to people with dementia that are known risk factors for Covid-19: old age, living in a nursing home and having conditions like obesity, asthma, diabetes and cardiovascular disease. After researchers adjusted for those factors, Americans with dementia were still twice as likely to have gotten Covid-19 as of late last summer.
Friday, January 29, 2021
The ABA Commission on Law and Aging has published vol. 42, Issue 3 (Jan.-Feb.2021), its current issue of BIOFOCAL. The issue contains several articles, including a couple on Social Security Rep Payees, with the lead article, How Does Social Security Select Representative Payees for Adults? Results of an Independent Research Study
Almost four million older adults and adults with disabilities have representative payees appointed by the Social Security Administration (SSA) to manage their Social Security or SSI payments. How does SSA determine if a payee is needed? How do SSA staff select a payee? How do they choose an individual versus an organizational payee? What are the considerations in long-term care residential facilities serving as the payee? What about guardians serving as payee? How and to what extent does SSA maintain consistency in payee determinations?
In 2018, the Social Security Advisory Board (SSAB) charged researchers at Virginia Tech and the ABA Commission on Law and Aging to conduct an independent study focusing on these compelling questions. The study team addressed SSA processes for selection of payees for adults. The underlying assumption was that a better understanding of selection practices ultimately could lead to process improvements, as well as a reduction in the potential for misuse and abuse of beneficiary funds while maintaining beneficiary rights.
A pdf of the full issue is available here.
Monday, January 11, 2021
The American Bar Association Commission on Law & Aging has released its 2020 summary of guardianship legislation. The summary, Directions of Reform: 2020 Adult Guardianship Legislation Summary, American Bar Association Commission on Law and Aging is available .here.
The summary is divided into the following: pre-adjudication issues, multi-jurisdictional issues, guardian selection, guardian actions, fees, rights of the individual, capacity matters, guardian & fiduciary misconduct, and post-adjudication/monitoring matters. The summary includes a chart at the end for a quick reference. The link to the archives for prior year summaries is available here.
Thursday, December 24, 2020
A couple of days ago, the Washington Post ran an uplifting article about a hug room in a SNF. After months of isolation, a ‘hug room’ lets Italian nursing home residents touch family for the first time tells us about "a 7-foot-tall piece of plexiglass, molded into a three-sided booth. It had four cutout holes, where protective sleeves would be added for arms. It was known, in the strange language of the pandemic, as a “hug room,” but it was less a room than a barrier: residents on one side, relatives on the other." Although not as ideal as living in a COVID free world (or at least a vaccinated one), this "plexiglass represented the sort of modest step some nursing homes are now taking in a year when they have faced excruciating decisions about how protective to be and how best to reduce their risks." The article references similar efforts taken by other SNFs.
A little bit of good news, then, for Christmas.
PPS-remember to thank first responders, health care professionals and all who keep us safe and going through this trying time. Stay safe and stay healthy.