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
Last month the New York Times ran an article on How Deceptive Campaign Fund-Raising Ensnares Older People.
The dirty little secret of online political fund-raising is that the most aggressive and pernicious practices that campaigns use to raise money are especially likely to ensnare unsuspecting older people, according to interviews with digital strategists and an examination of federal donation and refund data.
Older Americans are critical campaign contributors, both online and offline. More than half of all the online contributions processed by [one company] in the last cycle, 56 percent, came from people who listed their occupation as “retired,” federal records show.
Digital operatives in both parties deploy an array of manipulative tactics that can deceive donors of all age groups: faux bill notices and official-looking correspondence; bogus offers to match donations and hidden links to unsubscribe; and prechecked boxes that automatically repeat donations, which are widely seen as the most egregious scheme.
But some groups appear to specifically target older internet users, blasting out messages with subject lines like “Social Security” that have particular resonance for older people, and spending disproportionately on ads for an older audience. In many cases, the most unscrupulous tactics of direct mail have simply been rebooted for the digital age — with ruthless new precision.
The article notes that age is not reported on federal filings, so the depth of this occurring is unclear. However, the NYT looked at refund data correlating with voter rolls for California and reports "that the average age of donors who received refunds was almost 66 on [a republican company] and nearly 65 on ... the equivalent Democratic processing site... Even more revealing: More than four times as much money was refunded to donors who are 70 and older than to adults under the age of 50 — for both Republicans and Democrats." The issue is not limited to political campaigns the article notes. "There is an entire initiative at the Justice Department devoted to elder abuse, and the F.B.I.’s Internet Crime Complaint Center reported nearly $1 billion in losses for those 60 and older in 2020." One expert quoted in the article noted "older people face a double whammy online when combining their generational lack of familiarity with technology and age-related cognitive declines."
The article delves into some reasons for such an impact and examines some of the email messages. It's an interesting read.
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.
Sunday, July 11, 2021
Analyzing Britney Spears' Conservatorship: How Should Courts Respond to Allegations of a Toxic Guardianship?
This summer, J. Collin Fulton, a rising 2L student at Dickinson Law, with a prelaw background in journalism, has been doing a fantastic job while working on projects with me. He put together this very thoughtful overview of how Britney Spears' concerns, arising in the context of the California-based proceeding, may be relevant to the larger analysis of guardianships and conservatorships across the nation.
In the areas of guardianship and conservatorship law, perhaps no recent case has captured the attention of the American public as thoroughly as the conservatorship of Britney Spears. The Pop singer’s conservatorship was established in California in 2008 and has become one of the best-known examples of how, under U.S. law, a person can have the management of both their personal life and financial affairs placed under the control of a court-appointed guardian/conservator, typically as a result of mental or physical conditions or advanced age.
While a legion of Ms. Spears’ fans has routinely called into question both the necessity and nature of the singer’s conservatorship, it was the release of the New York Times' 2019 documentary “Framing Britney Spears” which brought the details of Ms. Spears conservatorship to the attention of the broader public. I personally became aware following the Times’ publication on June 22nd of an article detailing how Ms. Spears herself feels about the conservatorship. Based on court records acquired by the NYTimes, the article details both Ms. Spears opposition to the continuance of her conservatorship in its present form as well as Ms. Spears claims concerning some of the effects the conservatorship has had on her life. Based on court documents going back to 2014, the NYTimes article reports that:
- Spears “feels the conservatorship has become an oppressive and controlling tool against her.”
- Spears has informed the court that, as a result of the conservatorship, she felt compelled to perform against her will and compelled to stay at a mental health facility against her will.
- The conservatorship restricted a broad range of Ms. Spears decision making, ranging from who she was allowed to date to the manner in which she could decorate her home.
Ms. Spears’s June 23 public testimony further cast the conservatorship in a negative light. In the testimony, the singer claimed that, against her will, she was forced to take mood-altering drugs and forced onto contraception. Ms. Spears again called for her conservatorship to be ended and generally for the laws surrounding conservatorships to be changed. This call has been echoed by numerous other singers in support of Ms. Spears, including Justin Timberlake, Halsey, Brandy, and Mariah Carrey, as reported by the BBC.
Given what Ms. Spears claims has transpired as a result of her conservatorship and the public support she has received, I became deeply curious about how a conservatorship can actually be terminated. Given the complexity of guardianship/conservatorship laws, this is a question without a simple answer.
First, state laws vary significantly regarding who, how, and why a person can be placed under a guardianship/conservatorship. As Ms. Spears’s case takes place in California, I focus there.
There are two types of conservatorships under California law: Lanterman-Petris-Short (LPS) and Probate conservatorships, the latter of which is exemplified by Ms. Spears’s situation.
Such conservatorships are typically permanent affairs in California; however, they can be terminated in the following ways:
- The conservatorship ends due to the death of the conservatee.
- A judge may end the conservatorship upon petition to do so resulting from the conservatee regaining the ability to manage their own affairs (The argument Ms. Spears appears to be currently making).
- A conservatorship of the estate can be ended if the conservatee ceases to possess any assets to protect.
Learning this raised a new question for me: why would a court allow a conservatorship such as Ms. Spears’s to continue given her allegations? I believe the answer to this question lies in the purpose of guardianship/conservatorship laws.
This purpose is perhaps best exemplified in the California “Handbook for Conservators,” which the state mandates for conservator cases. The Handbook has a clear message for every new conservator: “You have been appointed conservator because someone – your parent, spouse, child, or other relative or friend – needs help, and you are willing to lend a hand.” This simple message, in my opinion, captures the thought behind guardianship and conservatorship laws. There are, sadly, situations in which a person is unable to manage their affairs. Guardianships and conservatorships allow for a legal redress to such situations, enabling courts to appoint a trusted individual to provide assistance in such circumstances.
The California Handbook also highlights another important fact central to the functionality of conservatorships: “The position of conservator is one of great trust and responsibility. The court and conservatee are trusting you to follow the law and to act in the conservatee’s best interests.” Given the incredible responsibilities assumed by a guardian/conservator, it is indeed imperative that guardians/conservators execute their duties with the utmost understanding and respect for the individual's own values and goals, while also complying with the legal obligation to make decisions in the best interest of the individual they have been appointed to protect.
With the purpose of guardianships/conservatorships now understood, I turn back to Ms. Spears and the question of why, given her allegations, her conservatorship still remains. The answer is, simply, that legal process such as this take time.
Just as a court needed to consider a multitude of factors in determining that Ms. Spears should become a conservatee, the court must now perform proper inquiries into the allegations that Ms. Spears has raised and then determine an appropriate response to take based on the validity of these allegations. This is true not only for Ms. Spears, but for any person in a guardianship/conservatorship situation. Guardianships/conservatorships are serious affairs, ones in which a person’s ability to control their own lives have been taken from them and handed to another individual, hopefully one who is trustworthy and will act in their best interest. Should doubts emerge about the actions of a guardian/conservator, or indeed the necessity of an established guardianship/conservatorship itself, investigating the situation thoroughly is paramount to the integrity of not only the guardianship/conservatorship in question but also the legal system of guardianships/conservatorships at large.
Mr. Fulton concludes: I thus believe that while a quick response from the court may satiate the immediate public outcry for change, a proper inquiry which establishes the truth and, in turn, enables the court to act based on the facts will not only improve Ms. Spears' situation but enhance public knowledge on the current state of guardianship/conservatorship laws in the United States.
July 11, 2021 in Cognitive Impairment, Consumer Information, Current Affairs, Elder Abuse/Guardianship/Conservatorship, Estates and Trusts, Ethical Issues, State Cases, State Statutes/Regulations | Permalink | Comments (0)
Tuesday, July 6, 2021
- Choose a trusted financial advocate
- Organize your financial information
- Start a conversation with your financial advocate
- Explain your future money management needs and what you expect from your advocate
- Officially appoint your advocate as your agent under a financial power of attorney
- Shift money management to your advocate when the time is right
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."
Thursday, May 20, 2021
Colorado: "Former Police Officers" Facing Criminal Charges For Conduct in Arrest of Woman with Dementia
On May 19, 2021, the District Attorney's Office covering Loveland Colorado announced criminal charges against two officers who had already been removed from the force after details became public about their June 2020 arrest of a 73 year-old woman with dementia. The primary arresting officer was charged with second degree assault causing bodily injury, attempt to influence a public servant (both being felony charges) and official misconduct, a misdemeanor, while a second officer who arrived midstream, was charged with misdemeanors, of "failing to intervene" in a case of excessive force, failing to report the use of force, and official misconduct, according to records from the DA's office.
More details here:
May 20, 2021 in Cognitive Impairment, Crimes, Current Affairs, Discrimination, Elder Abuse/Guardianship/Conservatorship, Ethical Issues, State Cases, State Statutes/Regulations | Permalink | Comments (0)
The Washington Post published this article, When an ailing parent needs more care, sibling conflicts can arise and add to stress.
Everyone wants what is best for Mom. But when an aging parent receives a dire diagnosis, old scores, rivalries and pecking orders from childhood can come back to haunt.
Siblings may spar over the merits of assisted living vs. in-home care. The oldest may make a critical decision without consulting the others. Another is focused on who will pick up the tab.
The article notes that typically one of the kids does the bulk of the caregiving, usually "the oldest or youngest daughter or the parent’s favorite...." Note this quote from the article: "The most common grievance of primary caregivers: “Why is no one helping me?” ... On average, the person in this role devotes 24 hours per week to caregiving over a period of four to five years, according to the AARP-NAC report. This, while the majority hold other jobs, too." Siblings may not reconcile just because mom now needs care. Others may live too far away to pitch in. The experts interviewed recommend a plan, identifying which sibling might contribute money, another may be able to provide hands-on help, another can handle the administrative matters like reviewing insurance claims and paying bills. One message that comes through clearly in the article is the importance of communication amongst the kids. Avoid the traps of arm-chair quarterbacking when the siblings who aren't providing the care decide the sibling caregiver isn't providing the care in the way they would.... The article discusses the use of mediators or social workers who work with elders.
The biggest mistake caregivers make is not starting conversations earlier with parents about advance planning, Irving says.
Ask parents what quality of life looks like for them and where they want to live in their later years, she says. Being able to respect a parent’s wishes can circumvent sibling infighting later.
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)
Thursday, April 15, 2021
The elder justice legislation found in this document was elicited and finalized from the National
Center on Elder Abuse (NCEA) Listserv and independent websites in February 2021. The
compilation is intended to reflect highlights across the nation and does not include all legislation related to elder justice. However, updates will be sent biannually and states are encouraged to send updates on significant legislative action to Ageless Alliance. This document reflects activity in 15 states and highlights at the federal level.
In addition to summaries by state, the highlights include links to the individual legislation.
Oh and btw, mark your calendars now for the 2021 World Elder Abuse Awareness Day, June 15, 2021.
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.
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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.
Wednesday, February 17, 2021
First, good news from California. Recognizing the issue with elders who may not be able to get to vaccine sites (or sign up online....), Kaiser Health News reports on one solution in California. Vaccines Go Mobile to Keep Seniors From Slipping Through the Cracks
The team of county nurses and nonprofit workers is targeting Contra Costa County residents who are eligible for covid vaccines but have been left out: residents of small assisted-living facilities that haven’t yet been visited by CVS or Walgreens, and occasionally people who live in low-income senior housing. The retail pharmacy giants have a federal government contract to administer vaccines in most long-term care facilities.
Launched a few weeks ago, the strike team moves through each vaccination clinic with practiced choreography. At a small group home in Antioch recently, a nurse filled syringes while another person readied vaccine cards and laid them on a table. An administrative assistant — hired specifically for these clinics — checked everyone’s paperwork and screened them for symptoms and allergies before their shots, logging them into the state’s database afterward. After the shots, a strike team member told each person when their 15 minutes of observation was up.
The endeavor is going to take time because there are so many of these facilities, many of which have just a handful of residents. It may be slow-going, but it's going!!!!
So that was the good news. Now for the not-so-good, but not surprising news from this article also published in Kaiser Health News: Family Caregivers, Routinely Left Off Vaccine Lists, Worry What Would Happen ‘If I Get Sick’.
Tens of thousands of middle-aged sons and daughters caring for older relatives with serious ailments but too young to qualify for a vaccine themselves are ... terrified of becoming ill and wondering when they can get protected against the coronavirus.
Like aides and other workers in nursing homes, these family caregivers routinely administer medications, monitor blood pressure, cook, clean and help relatives wash, get dressed and use the toilet, among many other responsibilities. But they do so in apartments and houses, not in long-term care institutions — and they’re not paid.
““In all but name, they’re essential health care workers, taking care of patients who are very sick, many of whom are completely reliant upon them, some of whom are dying... Yet, we don’t recognize or support them as such, and that’s a tragedy.”
If the caregiver is older and meets the age-threshold for the caregiver's particular state, then the caregiver is eligible for vaccination that way. But the younger caregivers are out of luck right now. This is an important article. Read it!