Tuesday, September 25, 2018
Last weekend, Penn State's Dickinson Law held our annual alumni weekend, combined with a convocation ceremony for first year law students. I also happened to attend a non-law school function. In breaks during scheduled events, I had time to chat with alums and friends and by the end of the weekend, I realized there was a bit of theme to my conversations the last few days. In several of the conversations, someone described to me scenarios where an older individual had become involved with a new friend or a new caregiver, or a long-lost family member and was "allowing" that third person to take advantage of them, usually in the form of monetary gifts or "loans," that would never be repaid.
As we talked, I think we mostly agreed that one possible motivating factor for the older person was some level of fear, and not fear of the third person, but fear of being alone. The exploitive behavior was tolerated because it was apparently preferable to being alone, or worse, being compelled to living in the dreaded nursing home.
Another analysis I heard, but was less willing to agree with, was the lament, "what can you do, because X is competent and he has a right to give away his money if he wants to do so?"
In one example, the elderly person removed all of his life savings from a long-time professional money manager and placed the assets with a "new" manager, all because the new manager promised to charge "no" management fees. The new manager held no licenses or professional qualifications. A few months later, the client passed away -- and the new manager turned out to be the sole beneficiary of the estate.
In another instance, the observation about competency or capacity was made about an older person over the course of several months, even as that person became more and more entangled with seemingly opportunistic "befrienders" who were viewed as untrustworthy by others. Several weeks after the man seemed to disappear, his body was found in a shallow grave, while someone was still accessing his Social Security income. A pretty dramatic end to that story of misplaced trust.
My question: How is it that we all tend to emphasize that the older person was competent -- or appeared to have capacity -- even as there is also evidence he or she is trusting the wrong persons?
What I have learned from working with neuropsychologists is that so-called mini-mental exams used by primary care physicians do not necessarily evaluate an important, core component of capacity, a person's ability to exercise judgment in a sound way. Some screening tools tend to focus on cognitive components that are more easily evaluated through a brief exercise, such as asking the individual to perform exercises that tend to focus on short-term memory or even delayed-recall abilities. This is important because one aspect of judgment is the ability or inability to evaluate risk. Impaired judgment is viewed as an executive dysfunction or impairment, but it can exist without (or with only modest) memory impairment. Plus, impaired executive function can also be associated with lack of awareness or denial that there is a problem.
The significance of loss of executive function has been tracked by legal practitioners, such as Patterns in Cases Involving Financial Exploitation of Vulnerable Adults (2014 Michigan Bar Journal). On the important differences in screening tests used, see also Assessing Executive Dysfunction in Neurodegenerative Disorders: A Critical Review of Brief Neuropsychological Tools, published November 2017 in Frontiers in Aging: Neuroscience.
September 25, 2018 in Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship, Ethical Issues, Legal Practice/Practice Management | Permalink | Comments (0)
Friday, September 21, 2018
This is the third of three postings about adult guardianship reform, with an eye on legislation in Pennsylvania under consideration in the waning days of the 2017-18 Session.
Senate Bill 884, as proposed in Printer's No. 1147, makes basic improvements in several aspects of the law governing guardianships as I describe here. A key amendment is now under consideration, in the form of AO9253. These amendments:
- Require counsel to be appointed for all allegedly incapacitated persons;
- Require all guardians to undergo a criminal background check;
- Require professional guardians to be certified;
- Require court approval for all settlements and attorney fees that a guardian pays through an estate (reflecting recommendations of the Joint State Government Commission's Decedents’ Estates Advisory Committee).
Most of these amendments respond directly to the concerns identified in the alleged "bad apple" appointment cases in eastern Pennsylvania, where no counsel represented the alleged incapacitated person, where there was no criminal background check for the proposed guardian, and where the guardian was handling many -- too many -- guardianship estates.
A key proponent of the additional safeguarding language of AO 9253, Pennsylvania Senator Art Haywood, has been working with the key sponsor for SB 884, retiring Senator Steward Greenleaf. His office recently offered an explanation of the subtle issues connected to mandating a criminal background check:
The PA State Police needed to fix some technical issues for us regarding national criminal history record checks only to make sure that when we send the legislation to the FBI for approval, they won’t have anything with which to take issue. The FBI requires an authorized agency to receive these national background checks; DHS is an authorized agency, but the 67 Orphans’ Courts in PA are not. Further, the FBI prohibits us from requiring recipients of national background checks to turn them over to a third party for this purpose, so we can’t require DHS or receiving individuals to send the national background check to the court.
As such, we had to develop a procedure that would still get courts information about whether someone under this bill has a criminal background from another state that would otherwise prohibit them from serving as a guardian. We switched the language around a bit to require DHS to send a statement to the individual that verifies one of 3 things, either: (1) no criminal record; (2) a criminal record that would not prohibit the individual from serving as guardian; or (3) a criminal record that would prohibit the individual from serving as guardian. The individual would then have to bring this statement from DHS to the court when seeking to become a guardian. As in previous versions, the individual has an opportunity to respond to the court if there is a criminal record that would prohibit the individual from serving, and the response should assist the court in determining whether that person nevertheless is appropriate (for example, a person can voluntarily provide their own copy of their national background check – or other types of evidence – for the court to review).
The devil is in the details for any legislative reforms. It is often an "all hands on deck" effort to secure passage, especially in an election year.
Will the Pennsylvania Legislature pass Senate Bill 884 to make changes appropriate for safeguarding of vulnerable adults?
September 21, 2018 in Cognitive Impairment, Consumer Information, Crimes, Current Affairs, Elder Abuse/Guardianship/Conservatorship, Estates and Trusts, Ethical Issues, Health Care/Long Term Care, Property Management, State Cases, State Statutes/Regulations | Permalink | Comments (0)
Thursday, September 20, 2018
Continuing with the analysis from yesterday for why many jurisdictions are finally confronting the need to make changes in their adult guardianship policies and laws, here is my take on additional reasons. Will Pennsylvania enact Senate Bill 884 this session to get the ball rolling on reform?
Troubled histories have emerged across the nation. Public concern has grown around the need for more careful consideration of the roles played by guardians. For example, events in recent years have highlighted the following problems:
- In Las Vegas, Nevada, uncritical reliance on a few individuals to serve as appointed “professional” guardians was linked to manipulation and abuse of the incapacitated wards and misuse of the wards’ financial resources. Concerned family members alleged corruption and their advocacy drove a reluctant system to examine the history of appointments, leading to the indictment and arrests of a frequently appointed guardian, members of her staff and a police officer in February 2018.
- In New Mexico, two nonprofit agencies used for guardianship services were investigated; principals were indicted by the U.S. Attorney for thousands of dollars in theft from the estates of incapacitated individuals. This in turn triggered a massive call for emergency reform of New Mexico guardianship law, with the new laws coming into effect in July 2018.
- In Florida, complaints by family members and others presented to the Florida Legislature over several years, resulted in three successive years of reforms to Florida guardianship law. One dramatic example was a particular court’s uncritical reliance on “friends” of the court to be appointed as guardians and paid out of the wards’ estates. In some instances the court rejected appointment of available family members. In 2017, a jury awarded a verdict of $16.4 million against lawyers for breaching their fiduciary duties and charging unnecessary and excessive fees.
The New Yorker magazine published a feature article in October 2017 on the Las Vegas history, criticizing the state’s reluctance to investigate and make timely changes in its systems for appointment and monitoring of so-called professional guardians. The title of the article is eye catching: How the Elderly Lose Their Rights, by Rachael Aviv.
While location-specific news stories of scandals come and go, the persistence of guardianship problems points to systemic weaknesses that require modern, uniform standards. Thirty years ago, the Associated Press published a six-part national investigative series entitled Guardians of the Elderly: An Ailing System. The series revealed frequent failures to appoint counsel to represent an alleged incapacitated person and the lack of clear standards for guardians who serve as fiduciaries.
September 20, 2018 in Cognitive Impairment, Consumer Information, Current Affairs, Elder Abuse/Guardianship/Conservatorship, Estates and Trusts, Ethical Issues, Health Care/Long Term Care, Housing, State Cases, State Statutes/Regulations | Permalink | Comments (0)
Tuesday, September 11, 2018
Registration is open for Stetson Law's 20th annual Special Needs Planning Conference. The agenda is here . There are three pre-conferences on October 17: a full day program on Tax, a full day program on Pooled SNTs, and a half-day program on Veterans benefits. The National Conference is two days long and runs October 18-19, 2018. Registration info is available here. Can't attend in person? The National Conference is being webcast. Early bird registration ends September 21, 2018 so don't delay!
Disclaimer: I'm the conference chair. Hope to see you there!
Monday, September 10, 2018
Abigail Kawananakoa, age 92 and the heiress of a legendary Hawaiian estate as the descendant of a family who once ruled the islands, is at the center of a court dispute about whether she is able to manage her own affairs -- and a $215 million trust.
The money should go toward helping Native Hawaiians, they [Foundation Board Members] said at a news conference Thursday in front of Honolulu’s Iolani Palace. They are asking a judge to appoint a guardian for the elderly heiress, whose riches come from being the great-granddaughter of James Campbell, an Irish businessman who made his fortune as a sugar plantation owner and one of Hawaii’s largest landowners.
Many Native Hawaiians consider Abigail Kawananakoa to be the last Hawaiian princess because she’s a descendent of the family that ruled the islands before the overthrow of the Hawaiian kingdom.
A key court hearing in a legal fight over the trust is scheduled for Monday.
Her longtime lawyer, Jim Wright, persuaded a judge to appoint him as trustee, arguing a stroke last year left her impaired. Kawananakoa says she’s fine.
As trustee, Wright appointed three prominent Native Hawaiian leaders to serve as board members for the $100 million foundation Kawananakoa created in 2001. The foundation has a right to participate in the court battle because it is a beneficiary of her trust.
Kawananakoa “has reached a point in her life where she needs us to stand up and fight for her and her legacy,” said foundation board member Jan Dill. Kawananakoa intended that the foundation serve the Hawaiian community in arts, language, culture and education, he said.
For more, read Foundation Board: Protect Hawaiian Heiress' Millions.
While the above article does not fully explain the family dynamics, a photo accompanying the article depicts Ms. Kawananakoa and her wife, Veronica Gail Worth, who appears to be younger. Another article describes Ms. Worth as a "longtime caregiver." See A Cautionary Story of Elder Financial Abuse. Still other new reports describe Ms. Worth as Kawananakoa's "partner of 21 years," prior to their October 2017 marriage ceremony, conducted before a retired Hawaii Supreme Court Justice. See Hawaiian Heiress, 91, Marries Longtime Partner Amid Court Battle.
September 10, 2018 in Cognitive Impairment, Crimes, Current Affairs, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship, Estates and Trusts, Ethical Issues, Property Management, State Cases, State Statutes/Regulations | Permalink | Comments (0)
Tuesday, September 4, 2018
Thanks to Julie Kitzmiller for sending me the link to a podcast at AARP on the Brooke Astor case. Brooke Astor: Famous Socialite Robbed is one in a series (this one is #18) of podcasts on "the Perfect Scam". The podcast runs about 25 minutes. Here's a description:
A prominent philanthropist and the epicenter of the New York society scene, Brooke Astor lived a tumultuous but glamourous life. Left a fortune by her third husband, Vincent Astor, Brooke planned to live out her later years at her country estate. But when Brooke’s son refuses to let her do so, then sells his mother’s favorite painting (worth over $30 million), grandson Philip decides to step in. Philip’s efforts to return his grandmother to the country home she loved would uncover one of the most prominent cases of financial elder abuse in U.S. history, with millions lost and a family torn apart.
A time-coded transcript accompanies the podcast and is available here.
September 4, 2018 in Cognitive Impairment, Consumer Information, Crimes, Current Affairs, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship, Health Care/Long Term Care, Property Management, State Cases, State Statutes/Regulations | Permalink
Thursday, August 30, 2018
Recently I was reading the SSA website on Rep Payees and learned that certain rep payees have an accounting/auditing requirement. Representative Payee Site Reviews Conducted By Protection And Advocacy System explains
On April 13, the President signed the Strengthening Protections for Social Security Beneficiaries Act of 2018. The law directs state Protection & Advocacy (P&A) system organizations to conduct all periodic onsite reviews along with additional discretionary reviews. In addition, the P&As will conduct educational visits and conduct reviews based on allegations they receive of payee misconduct.
The P&A conducts a review, which includes:
- an interview with the individual or organizational representative payee;
- a review of the representative payee’s financial records for the requested beneficiary or sample of beneficiaries served;
- a home visit and interview for each beneficiary included in the review; and
- an interview with legal guardians and third parties, when applicable.
Financial Records Representative Payees Should Have Available for Review
When the P&A schedules the review, the reviewer will request the records needed for each beneficiary. Some common financial documents that representative payees may be asked to provide are:
- a beneficiary budget;
- a beneficiary ledger;
- individual bank statements;
- Collective account bank statements;
- receipts of income;
- account balances;
- bank reconciliation records;
- cancelled checks;
- expense documentation including receipts, bills, and rental agreements;
- how the payee keeps conserved benefits (e.g., checking, savings, etc.); and
- any other financial documents that pertain to a beneficiary’s Social Security and/or SSI benefits.
As part of the review the P&A also visits the beneficiary as well as any guardian or any "third parties." Anyone have any experience with these "audits"?
Wednesday, August 29, 2018
Giving Caregivers (and Law Students!) an Opportunity to See Life through the Eyes of A Person with Dementia
Relias Learning developed an educational tool to promote empathy for individuals with dementia, in the form of a a video shot from the perspective of "Henry," a care facility resident.
Originally intended to help in training professionals, in June 2018 Relias released a version to the general public free of any charges. A second Virtual Reality version, is available for a modest price of $10. There are lots of good points for class discussion in the free on-line version of a Day in the Life of Henry, available here.
Tuesday, August 28, 2018
On several occasions I've written about the issues of caregivers (the shortage of family caregivers, the financial impact on care giving) so i was interested in this article by Kaiser Health News, A Late-Life Surprise: Taking Care Of Frail, Aging Parents notes the failure of adult children to plan for their roles of caregivers-a role that may last a number of years and even cause the adult child to stop working. The KHN story focuses the profile of a "typical family caregiver, "“When we think of an adult child caring for a parent, what comes to mind is a woman in her late 40s or early 50s,” said Lynn Friss Feinberg, senior strategic policy adviser for AARP’s Public Policy Institute. “But it’s now common for people 20 years older than that to be caring for a parent in their 90s or older.” The story cites a new study from "the Center for Retirement Research at Boston College [which] is the first to document how often this happens. It found that 10 percent of adults ages 60 to 69 whose parents are alive serve as caregivers, as do 12 percent of adults age 70 and older."
The study shows that "about 17 percent of adult children care for their parents at some point in their lives, and the likelihood of doing so rises with age ... because parents who’ve reached their 80s, 90s or higher are more likely to have chronic illnesses and related disabilities and to require assistance, said Alice Zulkarnain, co-author of the study."
So consider the implications, some of which I mentioned in the above parenthetical in the opening sentence. The article lists the physical wear and tear "on older [caregiver] bodies, which are more vulnerable and less able to recover from physical strain" the potential for psychological stressors which can exacerbate any health issues the older caregiver may have, and social isolation of caregivers. There's also the financial toll that may come, with "hard-earned savings at risk with no possibility of replacing them by re-entering the workforce."
While courts are most often called upon to appoint guardians or conservators in the absence of an authorized agent, another way in which courts may be required to act is when family members disagree about the course of care under private arrangements. High profile examples of how this can arise often involve celebrities. The latest example seems to involve comedian Tim Conway, where his wife and daughter are reportedly at "odds over his medical treatment." From People magazine's online site comes this sad report:
The 84-year-old Carol Burnett Show star’s daughter Kelly is asking to be appointed conservator of her father and be in charge of his medical treatments, according to court documents obtained by PEOPLE and first reported by The Blast.
Kelly, 56, filed the documents in Los Angeles on Friday, claiming Conway’s wife Charlene is “planning to move him out of the excellent skilled nursing facility he is currently at” and place him in one that won’t give him access to “registered nurses at all times and his 24-hour caregiver and speech therapist (to help with swallowing).”
Charlene is Conway’s second wife. He was previously married to Kelly’s mother Mary Anne Dalton from 1961-78. (In addition to Kelly, they share daughter Jackie and sons Jaime, Tim Jr., Pat, Corey and Shawn.)
Kelly also states that Conway cannot “properly provide for his personal needs for physical health, food, and clothing” and is “almost entirely unresponsive.”
Second marriages, where the families did not blend well, often seem to be a factor, especially if money becomes an issue. My thanks to my Dickinson Law colleague Laurel Terry for sharing this item for our Blog.
August 28, 2018 in Advance Directives/End-of-Life, Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship, Estates and Trusts, Ethical Issues, Health Care/Long Term Care, State Cases | Permalink | Comments (0)
Monday, August 27, 2018
The title is somewhat tongue in cheek (I use the phrase in my class to be provocative) but it was only a matter of time until the potential of a micro-chip for elders was becoming a reality. This firm already microchips employees. Could your ailing relative be next? in the Washington Post, explains that a firm that already microchips employees is looking to develop "a more sophisticated microchip that is powered by human body heat and includes GPS tracking capabilities and voice activation [and]... [they] acknowledge that the chips will offer a convenient way to track people — especially those suffering from Alzheimer’s and dementia." The chip the company has in mind will do more than just track whereabouts, according to the article. It will have a medical component that will track the wearer's vitals and notify the wearer's doctor if something is amiss. These "medical microchips" have proponents as well as detractors as the article explains.
The article offers that only about half of the company's employees opted for the microchip, and there are other companies using the technology with humans. One expert thinks using microchips with humans is going to be a done-deal, but not for a few decades. I'm all for the use of tech, but worry about privacy, informed consent and cyber security issues. Although it requires a chip to be inserted into the body, is it any less invasive than cameras or technology monitoring devices such as those used in a medical cottage or a gps tracker in a cane or shoes? I still hold out hope for privacy....even though it may be eroding.
Sunday, August 26, 2018
The New York Times reported recently on some innovations in The Netherlands, in Take a Look at These Unusual Strategies for Fighting Dementia. It opens describing a virtual bus ride "simulation that plays out several times a day on three video screens" and moves into explaining that this virtual bus trip "is part of an unorthodox approach to dementia treatment that doctors and caregivers across the Netherlands have been pioneering: harnessing the power of relaxation, childhood memories, sensory aids, soothing music, family structure and other tools to heal, calm and nurture the residents, rather than relying on the old prescription of bed rest, medication and, in some cases, physical restraints." Another recreates a trip to the beach, both of which can spur conversations about previous trips.
The Netherlands has a preference for paying for care in the home rather than in facilities. I've previously blogged about one facility in The Netherlands (De Hogeweyk). In The Netherlands, "facilities, which are privately run but publicly funded, are generally reserved for people in an advanced state of the disease." One component of the Dutch approach is the physical surroundings designed to create a certain era or location. Another is creating small households of residents.
The article is accompanied by a number of great photos of involved residents. I plan to ask my students to discuss whether the Dutch model would work here in the U.S. What do you think?
Friday, August 24, 2018
Sweetheart Swindles: What to Do When You Suspect An Aging Friend or Family Member is Vulnerable to the Con?
A number of years ago, a friend of mine was riven with anxiety because his widowed father seemed to be under the sway of a woman who, in the eyes of the family and the man's long-time friends, was "bad news." His father had been a shrewd businessman, his son would lament, unable to understand his father's late-in-life willingness to casually hand cash to the woman. This was before I had begun working in elder law, and I remember thinking that perhaps the father was just "in love," and I questioned whether it was right for the son to interfere. Didn't the father have a right to be a fool in love?
We all know that conmen and conwomen are out there, but I suspect we also tend to have faith in our individual abilities to avoid falling into their traps as we age.
When it comes to watching others, perhaps we are amused by lighthearted movies that portray swindlers as relatively benign, with the "victim" just as likely to pull a reverse con as to be truly harmed. For example, think of the 1998 movie Dirty Rotten Scoundrels (which as actually a remake of 1964 movie, Bedtime Story), with two competing, debonaire charmers played by Michael Caine and Steve Martin and their mark, a woman of a certain age, who proved to be several steps ahead of them. In movies we treat the deeds of many criminals as entertainment -- remember Good Fellas and The Sopranos?
When we are reluctant to intervene, perhaps it is because we're conditioned to think optimistically about romance, even or especially as we grow older. Or, we're programmed to assume the individual is making a "foolish" but nonetheless coherent decision to continue involvement with the person who everyone else sees as "a problem."
These thoughts were running through my mind as I read an amazing, recent story in the New York Times, A New Wife, A Secret Past, and a Trail of Loss and Blood. I won't spoil it for you here by trying to summarize it, because much of the power of the tale comes from reading the details slowly.
At the same time, the story does raise a question in my mind, one that I've confronted often in elder law, about whether the individual's vulnerability is due to a cognitive impairment.
August 24, 2018 in Cognitive Impairment, Consumer Information, Crimes, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship, Ethical Issues, State Cases, State Statutes/Regulations | Permalink | Comments (1)
Tuesday, August 14, 2018
Genetic Information Nondiscrimination -- Should Consumer Protections Apply to Long-Term Care and Disability Insurance?
While following the most recent Tour de France cycling competition, I was intrigued by the spectrum of "products"advertised on broadcasts of the race stages -- or, alternatively, on the increasingly popular medium of podcasts by commentators such as Lance Armstrong on The Move. On one end was the amusing use of bicycling footage from the new movie Mama Mia 2, spliced to make it appear actual TdF racers were just ahead of the maniacal cast. On the other end were advertisements for genetic testing via companies once better known for tracking family trees. If your TdF hero (or anti-hero?) Lance Armstrong was advocating the benefits of better genetic knowledge via Helix, would those consumers consider the potential ripple effects of such knowledge?
Kaiser Health News recently pointed to key issues:
The federal Genetic Information Nondiscrimination Act [of 2008] prohibits health insurers from asking for or using your genetic information to make decisions about whether to sell you health insurance or how much to charge. But those rules don’t apply to long-term-care, life or disability insurance.
When you apply for long-term-care insurance, the insurer may review your medical records and ask you questions about your health history and that of your family. It’s all part of the underwriting process to determine whether to offer you a policy and how much to charge.
If the insurer asks you whether you’ve undergone genetic testing, you generally have to disclose it, even if the testing was performed through a direct-to-consumer site like 23andMe, said Catherine Theroux, a spokeswoman for LIMRA, an insurance industry trade group.
In the current political climate, it seems unlikely that Congress would tackle a wider application of mandatory nondiscrimination policies connected to risk factors for additional insurance policies. Thus, if you are asked the questions, you have to tell the truth or be subject to disqualification from benefits if the company later learns, for example, you were aware you had genes associated with increased risk of dementia, but failed to disclose that fact in the application process, a factor relevant to underwriting. Timing can matter, as also suggested in the Kaiser Health News Report:
Some states provide extra consumer protections related to genetic testing and long-term-care insurance, said Sonia Mateu Suter, a law professor at George Washington University who specializes in genetics and the law. But most follow federal law. If you get genetic testing after you have a policy, the results can’t affect your coverage.
August 14, 2018 in Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Discrimination, Ethical Issues, Federal Statutes/Regulations, Health Care/Long Term Care, State Statutes/Regulations | Permalink | Comments (0)
Friday, August 10, 2018
Kaiser Health News ran a story How Soon Is Soon Enough To Learn You Have Alzheimer’s? Do you want to know, or instead think just it's age-related memory loss?
The prospect of having Alzheimer’s can be so scary, and the current treatment options so few, that many people dismiss memory problems or other symptoms rather than investigate them, say Alzheimer’s specialists; it’s estimated that as many as half of all cases aren’t diagnosed.
But that may soon change. Researchers are making progress in measuring beta-amyloid and other Alzheimer’s biomarkers in blood that might eventually be able to reliably, inexpensively and non-invasively identify the disease years before cognitive symptoms develop.
Despite the scariness of the diagnosis, the article notes good reasons for early diagnosis, including discovering the underlying cause is a treatable condition, saving money "in terms of health costs and long-term care costs over the course of their lifetime," the time to plan for incapacity and "[r]esearchers hope that by getting more Alzheimer’s patients diagnosed early on, more people with the disease will, like Jose, be able to make the best of the health they have."
Wednesday, August 1, 2018
How do you find participants for clinical drug trials, especially if related to the dreaded "A" word, Alzheimer's disease? As outlined in The New York Times, such recruitment is not easy.
There are 5.4 million Alzheimer’s patients in the United States. You’d think it would be easy to find that many participants for a trial like this one. But it’s not. And the problem has enormous implications for treatment of a disease that terrifies older Americans and has strained families in numbers too great to count.
The Global Alzheimer’s Platform Foundation, which is helping recruit participants for the Lilly trial, estimates that to begin finding participants, it will have to inform 15,000 to 18,000 people in the right age groups about the effort. Of these, nearly 2,000 must pass the initial screening to be selected for further tests to see if they qualify.
Just 20 percent will meet the criteria to enroll in Lilly’s trial: They must be aged 60 to 89, have mild but progressive memory loss for at least six months, and have two types of brain scans showing Alzheimer’s is underway. Yet an 80 percent screening failure rate is typical for Alzheimer’s trials, said John Dwyer, president of the foundation. There is just no good way to quickly diagnose the disease.
The onerous process of locating just 375 patients illustrates a grim truth: finding patients on whom to test new Alzheimer’s treatments is becoming an insurmountable obstacle — no matter how promising the trial.
For more, read, For Scientists Race to Cure Alzheimer's, the Math is Getting Ugly. My thanks to colleague Laurel Terry for passing this article on to us.
Tuesday, July 31, 2018
In a recent issue of The New Yorker is staff writer David Owens' detailed account of his mother's entanglement with scammers. It is a tale all too familiar to any of us who have represented families in trying to stop such scams (much less recover money). At each level of law enforcement, he and his sister encounter experienced professionals who were fully familiar with such scams, but who simply weren't eager to pursue an investigation of another such case. You can feel the sense of their hopelessness about such a mission.
David's mother, living in Kansas, was a victim, via internet and telephone calls from a scammer who was working out of a base in California (or beyond). While the son and daughter were able to put an end to some of the scamming behavior by putting holds on financial accounts and taking over the checkbook, they were stunned when their mother avoided this intercept by simply traveling to another branch of the bank and accessing money from the "frozen" account in order to mail it off to her buddy "Sam."
All of this feels especially sad and familiar to me. Not just from the experience with clients we had in our Elder Law Clinic at Dickinson Law, but from my own mother's experience with a predatory former homecare worker. Even though we showed Mom the clear evidence of his particular con game (asking for two or more paychecks each week, calling one an advance, knowing she would not remember any such advance the next week; his pay doubled, then tripled in the course of 6 months), and even though she accepted he had to be discharged because he couldn't or wouldn't stop the con, he still managed to get her to meet him, in her bathrobe at the crack of dawn, in the alley behind her house to hand him more cash. It was another "advance."
In David Owens' story, My Mother and Her Scammer, his aging mother was lonely. So too was my mother; "helping" the conman made her feel like she was important and needed. But in both instances, our mothers' misplaced trust is a sign of reduced executive function in the brain, with the hallmark inability to appreciate risk. Plus, in both instances the conman knows exactly how to play his mark.
My thanks to Karen Miller, Esq., in Florida for sending me this well-written (and frustrating) tale.
Monday, July 30, 2018
On July 26, 2018, the Indiana Court of Appeals ruled unanimously that a trial judge was wrong in refusing to fund a severely injured adult's special needs trust with $6.75 million in funds from settlement of tort suit.
The trial judge had resisted, saying he disagreed with the legislative policy for special needs trusts, calling it a "legal fiction of impoverishment" that unfairly shifted costs of care to taxpayers. The trial judge would allow only $1 million in settlement funds to be placed in trust.
In the final paragraphs of In re Matter of Guardianship of Robbins, the appellate court concluded:
The trial court may well have a genuine disagreement with the policy decisions of our state and federal legislators, but it is still bound to abide by them. . . .
Here, there are no constitutional concerns preventing the legislature's policy choices from being enforced. Both our federal and state legislators have made an express policy decision to allow for a “legal fiction of impoverishment” by placing assets in a special needs trust, knowing full well that it has the potential to shift expenses to the taxpayer, but trying to ameliorate that cost by requiring that any remaining trust proceeds be repaid to the State upon the disabled person's death. While the trial court is free to disagree as to the wisdom of the legislature's policy choices, the trial court exceeded the bounds of its authority by refusing to enforce this policy choice based on that disagreement.
The trial court also refused to place the full amount of the settlement proceeds into the special needs trust because it concluded that the trust was solely for the benefit of the Guardian and Timothy's descendants. This is a mistake of law. As a matter of law, a special needs trust must contain a provision declaring that, upon the death of the disabled trust beneficiary, the total amount of Medicaid benefits must be paid back first, before any distributions to heirs are made. 42 U.S.C. § 1396p(d)(4)(A); I.C. § 12-15-2-17(f). Additionally, the special needs trust must be administered for the exclusive benefit of the disabled individual beneficiary for his or her lifetime. . . . Consequently, it is a legal impossibility that Timothy's special needs trust is designed to “benefit” either the Guardian or Timothy's descendants, and the trial court's conclusion in this regard was erroneous.
The trial court's ruling on the special needs trust was reversed and the case was remanded "with instructions to direct that the full, available amount of settlement proceeds be placed in Timothy's special needs trust."
July 30, 2018 in Cognitive Impairment, Current Affairs, Estates and Trusts, Ethical Issues, Federal Statutes/Regulations, Health Care/Long Term Care, Medicaid, Medicare, Property Management, Social Security, State Cases, State Statutes/Regulations | Permalink | Comments (0)
Friday, July 27, 2018
I've learned to be skeptical about reports on new medications for Alzheimer's dementia. The reports from drug companies come and go, often fading into obscurity.
Nonetheless, results of a large clinical trial as reported at the Alzheimer's Association International Conference in Chicago this week seem to offer more promise. From the New York Times' article:
The trial involved 856 patients from the United States, Europe and Japan with early symptoms of cognitive decline. They were diagnosed with either mild cognitive impairment or mild Alzheimer’s dementia, and all had significant accumulations of the amyloid protein that clumps into plaques in people with the disease, said Dr. Lynn Kramer, chief medical officer of Eisai, a Japan-based company that developed the drug, known as BAN2401, along with Biogen, based in Cambridge, Mass.
Many other drugs have managed to reduce amyloid levels but they did not ease memory decline or other cognitive difficulties. In the data presented Wednesday, the highest of the five doses of the new drug — an injection every two weeks of 10 milligrams per kilogram of a patient’s weight — both reduced amyloid levels and slowed cognitive decline when compared to patients who received placebo.
Of the 161 patients in the group taking the highest dose, 81 percent showed such significant drops in amyloid levels that they “converted from amyloid positive to amyloid negative,” Dr. Kramer said in an interview, meaning that the patients’ amyloid levels dropped from being considered high enough to correlate to dementia to a level below that dementia threshold.
The results discussed above apparently arise out of Phase II of the drug's testing. An earlier report, in 2017, was more equivocal, as captured on the ALZforum website here.
Further, as reported on Endpoints News, an "independent news organization reporting and analyzing the top global biotech and pharmaceutical R & D News of the day," a critical response is emerging since this week's public announcement:
But instead of cheering on evidence of success [for BAN2401], a large group of analysts last night zeroed in on a crucial change in the study that could have confounded the data presented — and now we have a brand new controversy to add to the literature of Alzheimer’s.
For more of the critique, read Eisai, Biogen Battered by Controversy over PhII Alzheimer's Study After Posting Positive Results.
Thursday, July 12, 2018
What Lessons Will Emerge From Arizona Investigation of 92-Year Old Woman Who Shot and Killed Her 72-Year Old Son?
Reading the news of a July 2 shooting was chilling, especially for anyone associated with long-term care or elder care. According to Arizona news reports, Anna Mae Blessing, age 92, explained, "You took my life, so I'm taking yours." She used a handgun, drawing it from the pocket of her robe, to shoot multiple times, killing her 72-year old son.
Ms. Blessing had been living in an apartment, along with her son and his girlfriend; she was reportedly upset about her son's plan to transfer her to an assisted-living facility. The apartment was located in Fountain Hills, east of Scottsdale, Arizona. Ms. Blessing also reportedly attempted, unsuccessfully, to shoot her son's girlfriend, who fought her off, dislodging both the first and a second handgun.
Followup stories reported the sheriff's office had responded at least six times to "domestic" calls at that location during the previous six months.
According to a sheriff office statement, Ms. Blessing is now charged with first degree murder, one count of aggravated assault with a deadly weapon and one count of kidnapping.
On the one hand, it could be tempting to dismiss this story as an isolated, sad, ironic tragedy.
But what I've been seeing is that senior living providers, especially those offering assisted living, are recognizing that something is deeply amiss about an individual's perception that assisted living is so horrible as to warrant this reaction.
Steve Moran who publishes the Senior Housing Forum asks "Why did she have such an aversion to assisted living?" He muses, "This is a fixable problem....." For more of Steve's thoughts read: "The Headline: Woman, 92, Killed Son Who Tried Putting Her in Assisted Living."
In an editorial titled "Assisted Living's Image Problem," Lois Bowers, Senior Editor for McKnight's Senior Living News, writes:
The Blessing case undoubtedly is a complex one, with more probably in play than a simple suggestion of a move to assisted living. But even so, it presents an opportunity for introspection for the senior living industry as well.
I mean, it seems that at least one person thought that assisted living was so terrible that a prison cell was preferable. And yes, this appears to be an extreme case, but it's not the first time that an older adult has resisted moving into a senior living community.
We know that senior living can offer physical and mental health benefits for older adults. So how can the industry improve at allaying their fears and educating them about those benefits?
And what can the industry do to educate the general public about the differences between assisted living communities and skilled nursing centers? More elucidation is needed, as was made obvious by articles in the lay press about the Blessing incident that used “assisted living” and “nursing home” interchangeably, despite a press release from the sheriff's office that specified that Thomas suggested assisted living to his mother (I know; I saw the press release).
We know that assisted living communities are different from SNFs, and we know that both types of facilities have evolved over the years, and yet I see this confusion regularly in the general media. I've seen government officials make this mistake, too.
So what's the solution? Surely, sales professionals educate individual prospects and their family members when they conduct tours and hold special events at their communities. Campaigns such as the American Seniors Housing Association's Where You Live Matters effort undoubtedly help, too, as does the advocacy work by organizations representing senior living operators.
I was in Arizona the day the story broke. I confess, I spent extra time with my arm around my own 92-year old mother that week -- at her home in assisted living.
July 12, 2018 in Cognitive Impairment, Crimes, Current Affairs, Dementia/Alzheimer’s, Ethical Issues, Health Care/Long Term Care, Housing, State Cases, State Statutes/Regulations | Permalink | Comments (0)