Friday, October 23, 2020
Ever find yourself saying, "what was their name again? It's on the tip of my tongue." Then do you worry that you have dementia because you can't remember the word? The Washington Post tackled this in a recent article, Dementia is more than occasionally forgetting a name or a word.
First, it is important to know that dementia cannot be diagnosed from afar or by someone who is not a doctor. A person needs a detailed doctor’s exam for a diagnosis. Sometimes, brain imaging is required.
And, forgetting an occasional word — or even where you put your keys — does not mean a person has dementia. There are different types of memory loss and they can have different causes, such as other medical conditions, falls or even medication, including herbals, supplements and anything over-the-counter.
There is normal age-related memory loss, and the article emphasizes that such memory loss is normal! Let’s distinguish from memory loss that is not normal---“forgetting the name of someone you see every day; forgetting how to get to a place you visit frequently; or having problems with your activities of daily living, like eating, dressing and hygiene….When you have troubles with memory — but they don’t interfere with your daily activities — this is called mild cognitive impairment. Your primary care doctor can diagnose it. But sometimes it gets worse, so your doctor should follow you closely if you have mild cognitive impairment.”
The article offers the CDC's quick bullet-point list of warning signs for specific domains when forgetfulness is more than just normal age-related memory loss:
- Reasoning, judgment and problem solving.
- Visual perception beyond typical age-related changes in vision.
Although Alzheimer’s is the dementia that most often comes to mind, the article reminds us that there are several types of dementia. The article provides a good overview of the issues that arise from dementia and concludes with this thought-provoking observation:
But even more frightening is unrecognized or unacknowledged dementia. You must, openly and honestly, discuss changes you notice in your memory or thinking with your doctor. It’s the first step toward figuring out what is happening and making sure your health is the best it can be.
And, as with any disease or disease group, dementia is not a “character flaw,” and the term should not be used to criticize a person. Dementia is a serious medical diagnosis — ask those who have it, the loved ones who care for them or any of us who treat them.
Monday, October 19, 2020
The New York Times reported recently on a hot topic with the upcoming election: whether an individual with dementia can still vote. Having Dementia Doesn’t Mean You Can’t Vote "tells us that for some, voting is still possible. The key, "he ability to express a preference," citing to a new report from experts on this topic. Even though the person has the right, the exercise of that right may be challenging: "[v]oting can become challenging for many older citizens, who may struggle to reach polling places, stand in lines, use computerized voting machines or read ballots printed in small type."
Further, the article notes, many believe they cannot help the voter in casting the ballot. "A diagnosis of cognitive impairment does not bar someone from voting. Voters need pass no cognitive tests. They don’t have to be able to name the candidates or explain the issues. If they need help reading or physically marking the ballot, they can be assisted, either at the polls or with mail-in ballots. In some states, even people under court-appointed guardianship don’t lose their voting rights."
So you want to help. What do you do? "If you are considering helping someone with dementia to participate in an election, and they have registered to vote, in most cases there are only two real guidelines to keep in mind.
- "After reminding the person that Election Day is nearing, ask whether he or she would like to vote." If the answer is no, you are done.
- If the answer is yes, then "you may read the voter the ballot choices, if he or she cannot read them, but cannot provide additional information or interpretation, although discussions before voting begins are permitted. “Ask them their choices and see if they answer,” ... “If they do, they vote.”
Even in normal times, there are challenges for those who need help with voting, for examples residents of SNFs. In the time of COVID, the challenges are even greater. The article is really interesting and I encourage you to read it. The study findings can be accessed here.
Friday, October 2, 2020
The National Guardianship Association (NGA) has released a September 21, 2020 FAQ for guardians about the pandemic. Frequently Asked Questions by Guardians About the COVID-19 Pandemic.
Here are the top takeaways
• Contact with My Client or Loved One – Maintaining contact is essential, whether remotely or in person.
• Special Considerations for Nursing Home Residents – New federal guidance provides ways you can safely visit a resident in person. While there still may be some restrictions on in person visits, you have a responsibility to maintain contact and monitor well-being through remote access.
• Special Considerations for Residential Groups Settings and Hospitals – While there may be restrictions on in-person visits, you have a responsibility to maintain contact and monitor well-being through remote access.
• Protections and Services for My Client or Loved One in the Community – Maintain contact with your client or loved one in the community, and make sure he or she gets services and supports to maintain health and well-being.
• Access to Courts – Each state determines its own procedures during the pandemic. Courts have made many changes, including implementing or expanding remote hearings, and there may be changes in requirements for timelines, notices, and submission of reports.
• Protecting the Rights and Well-Being of My Client or Loved One – The rights of your client or loved one have not changed, but the pandemic makes it more difficult to exercise certain rights. Take actions to ensure the person receives fair health care treatment, facilities follow safety protocols, and support the individual during this difficult time.
• Protecting the Medical Decisions for My Client or Loved One – Work with health care
providers to ensure that the health care choices and values of your client or loved one are
• Protecting the Finances of My Client or Loved One – As guardian of the estate or conservator,
ensure that your client receives all COVID-19 and other benefits for which he or she is eligible; develop and implement a financial plan that is flexible enough to accommodate demands due to COVID-19; and manage investments and financial affairs with increased vigilance during the pandemic.
• Safety Precautions – Take steps to make sure you are not exposed to or transmitting illness, and to respond if your client or loved one is exposed to COVID-10, shows symptoms, or is hospitalized. Be alert to COVID-19 frauds or scams.
The 20 page FAQ with detailed explanations is available here.
October 2, 2020 in Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship, Health Care/Long Term Care, State Statutes/Regulations | Permalink | Comments (0)
Wednesday, September 30, 2020
There have been lots of discussions about the impact of isolation necessitated by COVID, especially on elders. We have previously written about robot pets, and now the New York Times has examined the role of these robots in lessening the impact of isolation during the pandemic: In Isolating Times, Can Robo-Pets Provide Comfort?
Such devices first appeared in American nursing homes and residences for seniors several years ago. A Japanese company began distributing an animatronic baby seal called PARO in 2009, and Hasbro started marketing robotic cats in 2015.
But the isolation caused by the coronavirus, not only in facilities but also among seniors living alone in their homes, has intensified interest in these products and increased sales, company executives said. It has also led to more public money being used to purchase them.
The article discusses the adoption of the robots by various facilities, and then the interest individuals have shown in having the robots as their companions.
Of particular interest is the Joy for All brand sold by Ageless Innovation, a spinoff of Hasbro, and available from retailers like Walmart and Best Buy for about $120.
One of the largest studies, underwritten by United HealthCare and AARP, distributed free Joy for All robots to 271 seniors living independently.
All the seniors suffered from loneliness, according to a screening questionnaire. At 30 and 60 days, “there was improvement in their mental well-being, in sense of purpose and optimism,” said [the] chief medical officer of AARP’s business subsidiary and a study co-author. The study also found “a reduction in loneliness,” ... although the questionnaires showed that participants remained lonely.
Armed with such findings, Ageless Innovation has been offering discounted robots to state agencies working with seniors. (Both Joy for All and PARO robots can be sanitized to prevent viral transmission, the companies said.)
One Medicare Advantage plan covers them and Ageless Innovation is working to get other MA plans to also cover them. The article also discusses the views of fans and critics of the use of these robot pets. Of course, nothing beats human interaction! What do you think?
Monday, September 28, 2020
Two researchers are collecting data on court monitoring involving conservatorships and guardianships.
The National Center for State Courts would like to learn about your experiences with court monitoring practices of guardians and conservators.
This survey is part of the research that [two researchers] are conducting in preparation for the 4th National Guardianship Summit to be held in May 2021, at the Syracuse University Law School.
Please answer the questions with reference to the jurisdiction you are most familiar with. Responding to the survey will take less than 15 minutes of your time. You will not be identified in any manner, as findings from the study will be presented only in the aggregate.
The researchers acknowledge the assistance of the State Justice Institute in conducting this survey.
September 28, 2020 in Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship, State Cases, State Statutes/Regulations, Statistics | Permalink | Comments (0)
Wednesday, September 23, 2020
The ABA Commission on Law & Aging, along with the Penn Memory Center, has announced the release of a new voting guide, Assisting Cognitively Impaired Individuals with Voting: A QUICK GUIDE.
Here's the intro to the guide
Difficulties in communication can occur when interacting with a person who has cognitive impairment. The techniques and tips described in this guide will help make sure that your communication is as effective as possible and within the limits of assistance permitted by election laws.
These techniques and tips are especially important when interacting with persons who are diagnosed with Alzheimer’s disease or another brain illness or disorder such as stroke or head injury.
The guide discusses capacity to vote, communication challenges, and listening skills. The guide offers 10 case studies with suggestions for those who may be assisting such voters.
An underlying principle here is that people should not be treated any diferently in voting rights based on any perceived impairment or other personal characteristic. People whose mental capacities are clearly intact may vote for candidates based on any whim or reason, rational or irrational. Similarly, for persons with some level of cognitive impairment, if they can indicate a desire to participate in the voting process and they can indicate a choice among available ballot selections, their reasons for such choice are not relevant.
The full guide is available here.
Prohibiting visitors to SNFs has hopefully helped limit the spread of COVID. But what is the impact of those in isolation? According to the Washington Post article, Pandemic isolation has killed thousands of Alzheimer’s patients while families watch from afar, for some the impact has been profound. According to the Post's research, the article states that
Beyond the staggering U.S. deaths caused directly by the novel coronavirus, more than 134,200 people have died from Alzheimer’s and other forms of dementia since March. That is 13,200 more U.S. deaths caused by dementia than expected, compared with previous years, according to an analysis of federal data....
Overlooked amid America’s war against the coronavirus is this reality: People with dementia are dying not just from the virus but from the very strategy of isolation that’s supposed to protect them. In recent months, doctors have reported increased falls, pulmonary infections, depression and sudden frailty in patients who had been stable for years.
This is an important consideration as states begin to allow visits to residences of LTC facilities. Data is also showing increased deaths not specifically from COVID but "occur from causes such as hypertension or sepsis. But they are occurring at much higher levels than in the past, experts say, in part because of the pandemic’s indirect effects — hospitals being overrun or care being delayed."
The article highlights a number of individuals' stories and compares reopening of SNFs in other countries to that of the US. "Countries like the Netherlands have safely reopened their nursing homes without any increase in coronavirus cases by providing ample protective equipment, testing and rigorous protocols. ... But in the United States, little of the trillions in emergency funding has gone to nursing homes. For months, the Trump administration has talked of getting more testing into nursing homes, but the effort continues to be plagued with problems."
The article includes information about the methodology used for this study. This is a helpful article to use as a basis of class discussion. I'm assigning to my students!
September 23, 2020 in Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Federal Statutes/Regulations, Health Care/Long Term Care, State Statutes/Regulations | Permalink
Tuesday, September 22, 2020
Remember when you went to the movie theater (I know, it's been a while) and before the movie, there would be displayed on the screen that the movie would be in Dolby sound. Well, guess what. Dolby is more than sound. Dolby is the man who invented it, Ray Dolby to be exact. Mr. Dolby died a few years back from Alzheimer's. It's only fitting that his son has released a new movie, The Artist's Wife, abut Alzheimer's, New Film "The Artist’s Wife" Tells the Story of a Family Navigating an Alzheimer’s Diagnosis.
The film, described as "show[ing] the difficult and often raw dynamics of a family facing an Alzheimer’s diagnosis ... stars Lena Olin and Bruce Dern, and [Dolby's] own family’s experience facing the disease." An interview with the filmmaker about the film and his family experiences is available here.
The Alzheimer's Association is doing an advance screening of the film. "Visit this link to register to watch “The Artist’s Wife” before it is released in theaters and virtual cinemas on September 25. Access is limited, so please reserve your spot today. The film is currently only available to U.S. viewers."
Friday, September 11, 2020
Computer Weekly recently addressed the legal issues that may occur when using technology for caregiving AI may be a solution to the social care crisis, but what are the legal concerns?, looks at the caregiving situation in the U.K. Building on the story from yesterday about the robot "Pepper" who can carry on conversations, the article highlights some legal issues, such as an individual's privacy.
Consider this-the robot could report concerns about abuse, for example, "the technology might provide a report, supported by video evidence, to family members or those with the legal responsibility of care, such as attorneys or deputies, who can then review such material. It can easily become part of a care home contract to consent to such filming, although it is vital that this is handled in a sensitive manner and regularly deleted to ensure that a resident’s privacy is protected." The article notes concerns about "sensitive personal data." Would residents provide consent? Who would consent if a resident lacks capacity. As the article concludes, "[W]e must never forget who is at the heart of these considerations, and the legal framework needs to catch up with the technology to protect them and for it to have a viable chance of success."
Thanks to Professor Feeley for sending me this article.
Wednesday, July 22, 2020
Some SNFs and ALFs are now allowing visits for residents, with proper precautions, rather than an absolute ban on visits. Kaiser Health News ran an update, States Allow In-Person Nursing Home Visits As Families Charge Residents Die ‘Of Broken Hearts’.
For the most part, visitors are required to stay outside and meet relatives in gardens or on patios where they stay at least 6 feet apart, supervised by a staff member. Appointments are scheduled in advance and masks are mandated. Only one or two visitors are permitted at a time.
Before these get-togethers, visitors get temperature checks and answer screening questions to assess their health. Hugs or other physical contact are not allowed. If residents or staff at a facility develop new cases of COVID-19, visitation is not permitted.
Slightly over half of the states have have allowed these SNF visits, after he release of revised guidance from CMS, while slightly less than half of the states have allowed ALFs to follow the same path. This change is something of a balancing act, and the article notes this can change if COVID cases show up. Although the prohibition on visits was intended as protection,
[A]nguished families say loved ones [suffered]too much, mentally and physically, after nearly four months in isolation. Since nursing homes and assisted living centers closed to visitors in mid-March, under guidance from federal health authorities, older adults have been mostly confined to their rooms, with minimal human interaction.
A separate, but related issue, the right of visitation at the end of life, has not been evenly applied.
Although federal guidance says visitors should be permitted inside long-term care facilities at the end of life, this is not happening as often as it should, said Lori Smetanka, executive director of the National Consumer Voice for Quality Long-Term Care, an advocacy group.
She wants family visitation policies to be mandatory, not optional. As it stands, facility administrators retain considerable discretion over when and whether to offer visits because states are issuing recommendations only.
Smetanka’s organization has also begun a campaign, Visitation Saves Lives, calling for one “essential support person” to be named for every nursing home or assisted living resident, not just those who are dying. This person should have the right to go into the facility as long as he or she wears personal protective equipment, follows infection control protocols and interacts only with his or her loved one.
The article also includes a map of states allowing visitation.
July 22, 2020 in Advance Directives/End-of-Life, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Federal Statutes/Regulations, Health Care/Long Term Care, State Statutes/Regulations | Permalink
Friday, July 10, 2020
As most of us who have accompanied an elderly parent to a doctor are aware, standard questions in most mini-mental exams include asking the individual to identify the day of the week and the date, and to name the president of the United States. During my mother's physical decline after age 90, she was watching cable news programs obsessively and we later joked that we should have paid more attention to her when she insisted during the summer of 2016 that the "polls predicting Hillary Clinton's election are wrong." After the election, when asked to identify the president, she would cast a rueful gaze on the questioner and make it clear she both knew who it was and whether she approved.
But apparently there is a much deeper history to older persons' responses. Without getting too political about my selection here, the history can be summarized in one report from a recent twitter feed:
"I work as a Paramedic and often one of my questions for patients to determine cog is to ask who the president is.. The replies I get are often correct and almost always followed up with interesting adjectives. I've been doing this 26 years and only last few [have] been that way."
Some of the other comments involve more poignant humor, but, still, interesting! Can you get "extra credit" points on a mini-mental exam?
Thursday, June 11, 2020
The seminal 1987 Nursing Home Reform Act requires all nursing facilities to care for their residents in a manner that that "will promote ,maintenance or enhancement of the quality of life of each resident." 12 USCA Section 1396r(b)(1)(A). The same law, at Section 1396r(e)(3), addresses "access and visitation rights:"
A nursing facility must - ...(B) permit immediate access to a resident, subject to the resident's right to deny or withdraw consent at any time, by immediate family or other relatives of the resident;(C) permit immediate access to a resident, subject to reasonable restrictions and the resident's right to deny or withdraw consent at any time, by others who are visiting with the consent of the resident;
(D) permit reasonable access to a resident by any entity or individual that provides health, social, legal, or other services to the resident, subject to the resident's right to deny or withdraw consent at any time ....
It wasn't candlelight and soft music that made the 40th anniversary of Luann and Jeff Thibodeau so memorable. It was gazing at each other through the window of Jeff's nursing home in Texas and eating carryout from the Olive Garden. Just the two of them. And a nursing assistant.
"She fed him, and I ate mine, and that was it," Luann Thibodeau says. "So that was our 40th wedding anniversary."
The Thibodeaus have not been in the same room since mid-March. That's when visitors were banned from nursing homes to slow the spread of the coronavirus. But family members say that talking via FaceTime and holding up signs at windows are no substitute for the hands-on care and emotional support their visits provide.
Family members often are an integral part of the care residents in nursing homes receive. They make sure meals are being eaten, clothes are being changed. They also offer invaluable emotional support. . . .
Luann Thibodeau has seen that decline in her husband. She used to bring dinner for him every night except Tuesdays when she goes to Bible Study. She says that as his multiple sclerosis has worsened, he's become increasingly disinterested in food. [She explains]. "I bully him into finishing a meal. And I'll say to him, 'Jeff, you know, this is what an adult man eats. So you need to eat this.' "
A staff member can't do what she does. Nursing home residents have rights. So if Jeff Thibodeau tells a nursing assistant that he's done eating after three bites, she has to abide by his wishes.
Without his wife's push, the results of her absence is striking.
For more, listen to the NPR podcast or read the parallel written narrative in "Banned From Nursing Homes, Families See Shocking Decline In Their Loved Ones."
The federal Nursing Home Reform Act's Bill of Rights has never been an easily enforceable mandate, and particularly in a global crisis the needs of the many can override the rights of individuals. But there does need to be a long-range plan on how better to facilitate visitation, recognizing it as an important part of any person's quality of life.
June 11, 2020 in Consumer Information, Current Affairs, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship, Ethical Issues, Federal Statutes/Regulations, Health Care/Long Term Care, Housing, Medicaid, Medicare | Permalink | Comments (2)
Monday, June 8, 2020
Oklahoma Legal Aid Services Update: 3rd Annual Memorial Elder Abuse Symposium Goes Virtual, Starting June 15
This year, the Sonya L. Patterson Elder Abuse Symposium hosted annually by Legal Aid Services of Oklahoma, will take place over the course of several weeks, in bite-size programming, rather than in a single, all-day conference format. In light of the online setting, the organizers are also able to open up registration and attendance to interested people outside of Oklahoma; however, there are limits on the number who can attend each session, so I recommend registering early. In past years, the symposium has drawn an audience of attorneys, law enforcement and social workers, with CLE credits available.
I'm very pleased for the opportunity to be a speaker this year. In addition to attorneys and judges, the speakers include health care professionals and bankers. The program honors the life and advocacy of a young Oklahoma public interest attorney, Sonya L. Patterson, who passed away far too soon in 2015, as the result of an accident at the age of just 30.
Here's the line up for the midday Symposium Webinar Series , with all sessions taking place on Central Daylight Savings Time:
Session 1: Monday, June 15th (11:00 am to 1:45 pm)
- The Psychic Effect on Victims of Elder Abuse by Family and/or Caregivers- Dr. Nancy Needell, M.D., Weill Cornell Medicine
- Attorney Responsibility to Client’s Ward or Principal- Rick Goralewicz, Staff Attorney, Legal Aid Services of Oklahoma
Session 2: Monday, June 22nd (11:00 am to 1:15 pm)
- Financial Exploitation of the Elderly- Justice Scott Roland, Oklahoma Court of Criminal Appeals with Elaine Dodd, Executive Vice President/ Fraud Division at Oklahoma Banker's Association and Jennifer Shaw, Oklahoma Securities Commission
- Extreme Home Takeover: Dealing with the “Concerned Relative”- Katherine C. Pearson, Professor of Law at Dickinson Law, Pennsylvania State University, Carlisle Pennsylvania
Session 3: Wednesday, June 24th (11:00 am to 1:15 pm)
- Elder Abuse General Topic- Stacey Morey, Oklahoma Attorney General’s Office, Chief of Consumer Protection Division
- Experts: Identifying and Utilizing in Elder Abuse Litigation- Kara Vincent, Attorney, Barber and Bartz
Session 4: Monday, June 29th (11:00 am to 1:15 pm)
- Domestic Violence and Seniors- Melissa Brooks, Staff Attorney at Legal Aid Services of Oklahoma and Gail Stricklin, Attorney at Law
- Abuse in Institutional Settings- William Whited, State Long Term Care Ombudsman and Nicole Snapp-Holloway, Attorney at Maples, Nix and Diesselhorst
Session 5: Wednesday, July 1st (11:00 am to 1:15 pm)
- Incompetency, Incapacity and Vulnerability- Mark Holmes, Attorney at Holmes, Holmes and Niesent, PLLC, Travis Smith, Attorney at Holmes, Holmes and Niesent, PLLC and Cathy Wood, Adult Protective Services
- Isolation and Loneliness- Laurel Dinkel, LCSW, Norman, Oklahoma
Click HERE for access to registration information for individual sessions or the entire series. My thanks to Oklahoma Legal Aid Staff Attorney Rick Goralewicz for the invitation.
June 8, 2020 in Advance Directives/End-of-Life, Cognitive Impairment, Consumer Information, Crimes, Current Affairs, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship, Ethical Issues, Housing, State Cases, State Statutes/Regulations, Statistics, Webinars | Permalink | Comments (0)
Sunday, June 7, 2020
The increasing use and sophistication of various new technical products and remote platforms for monitoring patients and family members is profiled in this article from the New York Times. I can remember when my very rudimentary way of checking daily on my Mom was watching her yahoo email account to see whether there was a green oval to indicate she was typing! Somewhere along the way, the ethical implications of monitoring other's online activity eliminated that option, and that makes sense.
And speaking of technology, tomorrow is my first participation in an online memorial. A Zoom send-off. A another step in the brave new world of finding new ways to be together alone.
Saturday, June 6, 2020
From a sad, powerful story about one of many deaths at Isabella Geriatric Center, carried in the New York Times:
A little after 1 in the afternoon, Aida Pabey got the call from the nursing home: Her mother was not going to make it. It was April 6, nearly four weeks after the state had barred all visitors to nursing homes, and Aida and her sister, Haydee, had been struggling to get even the most basic information about their mother. Was she eating? Had the coronavirus reached her part of the home?
Now this dire call. Just the day before, the sisters had been assured by an aide that their mother was “fine.”
They were both detectives in the New York Police Department, 20-year veterans. They were used to getting information, even from people determined to withhold it. But the nursing home had been a black box.
They raced to the home. Haydee got there first and managed to get upstairs. Aida, arriving second, identified herself as a crime scene investigator and brought safety gear. “I had my face shield, my bootees, my mask, my gloves,” she said. The security guard refused to let her in. “No. It was, ‘No way.’”
For more read, When Their Mother Died at a Nursing Home, 2 Detectives Wanted Answer. As one of our Blog's readers has commented recently, "we need to go a step deeper to the ROOT cause of these serious breaches of safe practices in care facilities."
June 6, 2020 in Cognitive Impairment, Consumer Information, Crimes, Current Affairs, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship, Ethical Issues, Health Care/Long Term Care, Housing, State Cases, State Statutes/Regulations, Statistics | Permalink | Comments (0)
Thursday, May 14, 2020
"Hey, how about giving it a rest, Bro?" -- The Importance of Achieving Consensus in Family Care Giving
Earlier today I had a conversation with someone about family dynamics during the Covid-19 crisis in the context of caring for elderly family members. The caller is the one who holds Power of Attorney for her older family member and who has been doing a lot of tough stuff, including care decisions for more than an year, decisions such as whether assisted living was appropriate, whether the beloved (but annoying) cat can go to assisted living with the family member, whether the larger family will somehow find a way to pay for a single occupancy room when the resident's own finances aren't enough, and whether the family member's increasing dementia will require additional one-on-one support, also requiring additional money.
But the call wasn't about any of those complicated parts of third-party decision-making challenges. It was about "can I tell my brother to back off? He's driving me crazy. He's 600 miles away from here. On the one hand he says, its up to me to make the decisions; on the other hand, when he hears from [our loved one] about being unhappy, he tells me what I should have done. Why didn't he say that before I had to make a decision?"
And then, not ten minutes after that conversation, I talked with a friend who is a director at a long-term care facility. She told me about how a big blowup occurred, because an adult child of one of their residents "found out" about the parent's Covid-19 diagnosis because of Facebook. The adult child called the director, upset about not hearing this information directly. The director, staying calm, tried to explain that the decisions about timing of communication on this topic were made by the resident's spouse -- and suggested the child call the spouse for more details. That in turn resulted in the spouse calling the director, in tears, about what the child had said.
So, perhaps in any context of long-term care, we all need to recognize that caregiving decisions are complex, fact specific, often requiring quick action. If the person who is the center of the care, the one who is loved (right?), and about whom the family is worrying, has made his or her own decisions about who is the Power of Attorney or other agent, we just need to take a deep breath before we criticize.
Or as one person wrote to me, in still another caregiving context, he was lucky he was "not having to navigate this alone," because he, his brother and sister were working hard to use their respective backgrounds (medicine and law) to strive for family consensus when called upon to make tough decisions for their parents. But when consensus isn't possible -- and that will happen -- he knew that one or more of them might have to "give it a rest" with well-meaning, post-decision advice.
A reporter recently asked me whether I'd been hearing about an uptick in elder abuse cases during the pandemic. So I was interested in the release of this research letter, Elder Abuse in the COVID-19 Era.
Consider this: "[t]he many necessary social distancing programs currently in place additionally create a growing dependency on others for the completion of daily living activities, and this dependency can be viewed as another vulnerability. The documented negative health effects of social isolation and loneliness in old age will undoubtedly intensify during this pandemic, and social isolation has been established as one of the strongest predictors of elder abuse."
Add to that the following:
With numerous “shelter-in-place” orders in effect to promote social distancing during the COVID-19 era, and increased dependency of older adults on others, the potential for elder abuse is all the more heightened, particularly since perpetrators of abuse are often close relations, and as more strangers opportunistically strive to take advantage of the fearful situation to exploit older adults for financial gain. Older adults with dementing illness are known to be of higher risk for abuse and neglect. With the shuttering of adult daycare programs, senior centers, and outpatient programs occurring concomitantly with adult children working from home, the possibility of unbuffered time together may contribute to circumstances leading to greater incidents of abuse.(citations omitted)
The authors offer suggestions to minimize the potential for instances of elder abuse in the time of COVID-19, which need to be
proactively addressed with organized, systematic, and creative efforts. Older adults within families and local communities can be contacted on a regular basis by those who are designated as advocates. Multiple communication methods can be leveraged for this purpose, ... Creativity in the development of resources to address specific vulnerabilities should be encouraged. …
Ways to address the potential threat of a trusted other range from increasing penalties for elder abuse at the societal level to the creation of an individualized safety plan that incorporates the wishes and preferences for autonomy and self-reliance of the older adult. Caregivers of older adults with dementia or other medical conditions … should be offered additional means of support and guidance. To combat rampant and increasing ageism, the perspective of older adults can be elevated by increasing representation on panels with significant decision-making power in public and private sectors during the pandemic. Those who have a substantial social media footprint can be of particular help combating ageist sentiments. Creative community-based resources that address any of these three intersecting domains of elder abuse must be rapidly developed and implemented. ….
Monday, May 11, 2020
Syracuse Law Professor Nina Kohn (currently a visiting professor at Yale Law), has an important Op-Ed in the Washington Post, in which she tackles the not so subtle ageism that accompanies response to COVID-19 -- while making it clear that the issues are much deeper than a single disease. She writes:
Of course, older adults are at heightened risk, even though covid-19 strikes younger people, too. But across America — and beyond — we are losing our elders not only because they are especially susceptible. They’re also dying because of a more entrenched epidemic: the devaluation of older lives. Ageism is evident in how we talk about victims from different generations, in the shameful conditions in many nursing homes and even — explicitly — in the formulas some states and health-care systems have developed for determining which desperately ill people get care if there’s a shortage of medical resources.
For more, read The Pandemic Exposed a Painful Truth: American Doesn't Care About Hold People. The subtitle? "We speak of the elderly as expendable, then fail to protect them."
May 11, 2020 in Consumer Information, Current Affairs, Dementia/Alzheimer’s, Discrimination, Elder Abuse/Guardianship/Conservatorship, Ethical Issues, Health Care/Long Term Care, Statistics | Permalink | Comments (0)
With stay at home orders and LTC facilities prohibiting outside visitors, how do guardians discharge their duties? The National Guardianship Association (NGA), along with the ABA Commission on Law and Aging, and the National Center for State Courts have compiled a list of useful resources for guardians, available here, along with a list of FAQs for guardians about serving in the time of COVID-19. The FAQ list is available here. Here are the top points from this 11 page FAQ
• Access to My Clients or Loved One in Nursing Homes – While federal guidance restricts in person visits to residents in nursing homes, you have a responsibility to maintain contact and monitor well-being through remote access.
• Access to My Clients or Loved One in Residential Groups Settings and Hospitals -- State requirements may restrict in-person visits to residents in residential group settings, and federal guidance sets limits on visits to hospital patients, but you have a responsibility to maintain contact and monitor well-being through remote access.
• Access to Courts – Each state determines its own procedures during the pandemic. While many are placing a priority on keeping courts open for cases involving the protection of vulnerable individuals, hearings may be delayed or conducted remotely, and there may be changes in requirements for timelines, notices and the submission of reports.
• Protecting My Clients’ or Loved One’s Rights and Well-Being – The rights of your client or loved one have not changed, but the pandemic makes it more difficult to exercise certain rights. Take actions to ensure the person receives fair health care treatment, facilities follow safety protocols, and support the individual during this difficult time.
May 11, 2020 in Consumer Information, Current Affairs, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship, Health Care/Long Term Care, State Cases, State Statutes/Regulations | Permalink | Comments (0)
Friday, April 24, 2020
Transparency Issues in Long-Term Care: The Potential for Misuse of Confidentiality Policies to Hide Infection Facts from the Public
Recently I was talking with a friend in another state who is the director of an assisted living facility that largely serves older adults who have significant risks factors. I asked, "Have you had any residents or staff members that have tested positive for COVID-19?" I asked her directly, because there was no way to know the answer to that question from public websites, either in her state or on a national basis. The good news was that her facility had had no such diagnoses, either among staff or residents. I also asked what she felt was key to avoiding infections, and we talked about the rates uncovered in other facilities in her own state. She said bluntly, "We learned from our experience with influenza the last two years that we had to make real changes, and we did so before the COVID-19 was a reality and doubled down when we started hearing about the coronavirus."
Internal infections have long-been a documented problem in residential care settings, and certainly not limited to so-called "nursing homes." Contributing factors include residents who may have physical or mental conditions that make self-protection difficult and perhaps impossible. My sister and I used to struggle mightily with a family member whose dementia interfered with the simple task of hand-washing -- even though this same person was the one who taught us the importance of soap and water from the time we were small children. It is perhaps ironic to recall that as a horse-mad girl I had tried to persuade both of my parents that there should be an exception for "barn dirt," on my theory that horse-related dirt was "clean dirt." My mothers still insisted I undress on the back porch and wash thoroughly before coming in for dinner. Wise woman, one who was quick to dismiss utter nonsense.
Fast forward decades and every day I hear new arguments regarding why facilities that have experienced life-threatening infections should not be required to report this in a public venue. The most problematic argument is one that says an individual's infection is confidential medical information that prevents the facility from reporting statistical information, and thus an infection cannot be made public. I've seen arguments about federal or state record-keeping policies such as HIPPA privacy rules or Pennsylvania's confidentiality rules as the rationalization. I think I know what my mother would call this kind of argument.
Syracuse Law Professor Nina Kohn tackles the history of mishandled safeguards against infections in long-term care with an Op-Ed for The Hill. In "Addressing the Crisis in Long-Term Care Facilities," Professor Kohn points to specific actions at the federal level that have weakened, rather than strengthened, potential safeguards. She makes five specific recommendations, including prohibitions on staff working in more than one-long-term care facility, to reduce cross-contamination, and the need for family members and others to make it clear that we "are paying attention to what is happening." She reminds us: "Those who are health care agents for nursing home residents should not be afraid to request access to medical records, as federal law entitles them to do, if facilities are not forthcoming with information about the care being provided."
April 24, 2020 in Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Ethical Issues, Health Care/Long Term Care, Housing, Medicaid, Medicare, State Statutes/Regulations, Statistics | Permalink | Comments (0)