Elder Law Prof Blog

Forgetting a Word Doesn't Mean Dementia

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:

• Memory.
• Attention.
• Communication.
• 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.

Can Individuals with Dementia Vote?

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.

1. "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.
2. 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.

National Guardianship Ass'n Releases Guardian FAQ on COVID

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
respected.
• 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.

Robot Pets Combatting Isolation?

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?

Guardianship Court Monitoring Survey

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 4^th 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.

 

Updates on SNFs and COVID

Not a day goes by, or so it seems, that thee isn't some new article or announcement or data released about SNFs.  Here, in no particular order, is some of the recent ones that I've collected in my inbox.

New York Times: Nursing Homes Oust Unwanted Patients With Claims of Psychosis

CMS: Nursing Home Visitation - COVID-19

Connecticut Health I-Team:  Pandemic Deals Another Blow To Nursing Homes: Plummeting Occupancy

New York Times: Inside a Nursing Home Devoted to Treating Those With Covid-19

CMS: Response to Nursing Home Commission Report.

Kaiser Health News:  Hospitals, Nursing Homes Fail to Separate COVID Patients, Putting Others at Risk

The Consumer Voice: Taking Care of You. TIPS FOR RESIDENTS OF LONG-TERM CARE FACILITIES

Voting Guide for Individuals with Cognitive Impairment

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. 

Dying from Isolation?

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!

A New Movie About Alzheimer's

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."

ABA House of Delegates Resolution on Guardianship Courts

At the recent annual meeting, the ABA House of Delegates Urges Congress to Invest in a Guardianship Court Improvement Program.

A Guardianship Court Improvement Program will provide states with the necessary federal
funding and support to improve their court processes and thus the lives of individuals with
guardians by improving outcomes for adults in the system, increasing the use of less restrictive options other than guardianship, and enhancing collaboration among courts, the legal system, and aging and disability networks.

The report, along with the proposed resolution, is available here. The final resolution reads as follows:

RESOLVED, That the American Bar Association urges Congress to create and fund a Guardianship Court Improvement Program for adult guardianship (following the model of
the State Court Improvement Program for child welfare agencies created in 1993) to
support state court efforts to improve the legal process in the adult guardianship system, improve outcomes for adults subject to or potentially subject to guardianship, increase the use of less restrictive options than guardianship, and enhance collaboration among courts, the legal system, and the aging and disability networks.

Interesting Reactions to a Standard Question for Mini-Mental Exams: Who is the President?

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? 

Topics and Speakers Announced for AALS January 2021 Program on Intersectionality, Aging and the Law

Hard to believe we are scheduling for January 2021, isn't it!  Here's the scheduled speakers and topics for the co-hosted program during the AALS Annual Meeting in San Francisco on "Intersectionality, Aging and the Law:"

• 
  Alex Boni-Saenz (Chicago-Kent), Age Diversity
• 
  Naomi Cahn (GW) & Nina Kohn (Syracuse), How Law and Sex Shape What It Means to Be Old
• 
  Veronica C. Gonzales-Zamora (UNM), The Triple Threat: Millenium Women of Color
• 
  Jessica Mantel (Houston), Allocating Scarce Medical Resources During a Pandemic: Rationing Based on Age is not the Same as Rationing Based on Disability
• 
  Katherine Pearson (PSU-Dickinson), Pandemic Protections: Where is the Line in Patient Autonomy?
• 
  Tara Sklar (U Arizona), Frailty, Vulnerability, and Big Data
• 
  Ruqaiijah Yearby (SLU), The Dark (Trinity): How Structural Discrimination, Wealth Inequalities, and Lack of Access to Health Care Cause Health Disparities for Elderly Women of Color

Using Advanced Age as a Factor in Rationing Health Care? Consider the Arizona COVID-19 Crisis Plan

I've recently returned from a week in Arizona with family.  I managed to arrive in Phoenix just in time for a surge in COVID-19 cases, traffic headaches connected to President Trump's campaign visits, a couple of new wildfires, and a few more degrees up the summer temperature gauge.  Probably the most newsworthy part of the trip was the announcement by Arizona authorities that the state was activating a COVID-19 crisis plan that involves triage -- or "rationing" as some  people interpreting the plan are calling it.  One component of the Arizona plan involves "protocols for scarce resource allocation."  An Arizona public statement describing the protocols attempts to reassure the public (emphasis provided with blue color):

If resources are sufficient, all patients who can potentially benefit from therapies will be offered therapies. If resources are insufficient, all patients will be individually assessed. No one will be categorically denied care based on stereotypes, assumptions about any person’s quality of life, or judgement about a person’s “worth” based on the presence or absence of disabilities.

All patients, regardless of resource availability, will be treated with respect, care, and compassion. Triage decisions will be made without regard to basis of race, ethnicity, color, national origin, religion, sex, disability, veteran status, age, genetic information, sexual orientation, gender identity, quality of life, or any other ethically irrelevant criteria.

When resources become inadequate -- implicit in the Governor's recent news conferences -- triage involves a color-coded system of triage "priority scores."  According to the statement, "All patients will be eligible to receive critical care beds and services regardless of their triage score, but available critical care resources will be allocated according to priority score, such that the availability of these services will determine how many patients will receive critical care."

The guidelines indicate health care providers must make an active assessment of the "patient's goals of care and treatment preferences.  It is imperative to know whether aggressive interventions such as hospitalization, ICU admission or mechnical ventilation are consistent with a patient's preferences.... All hospitalized patients should be asked about advance care planning documents, goals of care, and are strongly encouraged to appoint a proxy decision-maker (e.g., medical durable power of attorney... or health care agent) if not previously in place.  Patients in nursing homes, skilled nursing facilities, other long-term care settings, and outpatient care settings should also be asked about their goals of care and advanced care planning documents.... If advance clare planning documents are in place and available the healthcare provider should verify the patient's goals of care and treatment preferences remain the same....."

Will the patient's age, especially an advanced age, be relevant to a Arizona's Covid-19 crisis plan?  On the one hand, the guidelines indicate "age" is  expressly "removed ... as a specific factor for Triage Priority scores or Triage Color Groups."  On the other hand, when determining the Triage Priority Score, points assessed must reflect an evaluation of whether the patient is "expected to live more than 5 years if patient survives the acute illness [zero points added]" or whether death is "expected wtihin 5 years despite successful treatment of acute illness [2 points added]." If "death [is] expected within 1 year regardless of successful treatment of the acute illness," 4 points are added.  The patient's prioritization for critical care resources is best with a low score (1 to 3 total points), while priority is reduced to "intermediate" (4 to 5 points) or "lowest," if they are assessed with more than 6 total points.  Further, "age" is implicitly involved as the prioritization process somehow examines the specific patient's "opportunty to experience life stages (childhood, young adulthood, middle years, and older years)."

These are obviously tough calls in any health care assessment contect, but especially so in the middle of a pandemic.  Public health professionals have experience with these kinds of assessements. I suspect that many families also have engaged in a type of informal assessment when serving as a loved one's health care spokesperson or agent. 

My sister and I were thinking about last summer as I visited this summer.  Last summer, the two of us talked about similar factors when making the call on whether our mother would have hip-surgery at age 93 following a fall-related fracture.  The doctor said that without the surgery our mother was unlikely to walk again because of pain; with the surgery there was a significant chance she would be able to walk without pain.  She ended up sailing through the surgery -- and began taking steps again the same day.  Ironically, probably because of her increasing dementia, she had no fear of falling nor any memory of the surgey and thus was soon fully ambulatory (although she did sometimes substitute a walker for her occasional cane) and remained so for all but the last few days if the next six months of life.  That took her into the summer of 2019 in Arizona.

If the cornonavirus pandemic had occurred in the summer of 2019, and if safe access to hospitals and surgery were the issues, my best guess is Mom would probably have had a "high" score on any health care triage assessment -- in other words, not good news.  We are glad we never confronted decisions about respirators or ventilators.  We do know that our very elderly mother had a much better quality of life with major surgery than she would have had without it. Just one case, of course.  Again, tough calls (and yes, expensive calls for Medicare) with or without a pandemic to complicate the decision process.  

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)

1. The Psychic Effect on Victims of Elder Abuse by Family and/or Caregivers- Dr. Nancy Needell, M.D., Weill Cornell Medicine
2. 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)

1. 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
2. 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)

1. Elder Abuse General Topic- Stacey Morey, Oklahoma Attorney General’s Office, Chief of Consumer Protection Division
2. 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)

1. Domestic Violence and Seniors- Melissa Brooks, Staff Attorney at Legal Aid Services of Oklahoma and Gail Stricklin, Attorney at Law
2. 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)

1. 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
2. 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.  

NYT: "Detecting" the Reasons for a Death in Nursing Home

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."

Is "What Kinds of Tests?" Just As Important As "Whether to Test" in LTC?

Another interesting conversation with a long-term care administrator this week was about "what kind of tests" are important in the Covid-19 context, especially for older adults in a congregate setting.  A first question is whether every member of the staff and the residents should be tested regardless of the presence or absence of any symptoms.  A Washington Post editorial on May 14, 2020 called for "extreme measures"  Of course, the utility of such threshold testing mandates depends upon the availability of the means to test and how quickly the results of the tests will be processed.  It is unlikely that the nation's  number of residential care facilities will have the White House's "instant" testing equipment, right? 

But when Covid-19 is present in any congregate care setting, the administrator explained a second test may be even more important.   The test is for oxygen levels, taken with a monitoring device, sometimes referred to as an oximeter and often attached to a finger of the person in question. She explained to me that with Covid-19, the impairment of the lungs can occur with dramatic quickness and not necessarily with any complaints from the patient about shortness of breath.  The director explained that donations of oxygen concentrators to her community meant they are able to respond to lowered oxygen levels within seconds -- rather than within life threatening minutes or hours -- to provide enhanced oxygen for the resident.  Further, many at-risk people resident not in nursing homes, but in the many other variations of congregate senior care. 

Have you tried to convince a person with a cognitive impairment or an anxiety disorder to wear a mask or agree to keep that oximeter attached to their hand?  Will "extreme measures" include funding to support needed increases in care-staff ratios?  

"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.  

 

 

Elder Abuse in the Time of COVID

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

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

Add to that the following:

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

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

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

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

Many Organizations Collaborating to Seek Better Protections for SNF Residents

A number of national and state organizations on aging have written a letter to CMS, seeking changes in regulations to increase the care and protection of residents of SNFs.

Forty-five national and state organizations, including Consumer Voice, signed on to a letter that was sent today to the Centers for Medicare & Medicaid Services (CMS) Administrator.  The letter advocates for better protections for nursing home residents and better support of residents' ability to make decisions about their health care and place of residence.

The organizations call for immediate action by CMS and make six recommendations, including:   

1. Requiring immediate full disclosure of COVID-19 outbreaks by nursing facilities.

2. Setting higher standards for the necessary staff, training, and equipment to care for residents with COVID-19 and those without. 

3. Increasing staff assistance to facilitate communication between residents and their families.

4. Requiring facilities and states to work collaboratively with residents and their families when making transfers designed to “cohort” residents with others who also are COVID-positive or COVID-negative.  

5. Guaranteeing a resident’s right to return to the facility, if desired, and facilitating access to Medicaid home and community-based services.  

6. Protecting resident access to Medicaid by requiring all federally-certified facilities to be 100% Medicaid-certified during this emergency. 

The entire letter is available here.

Pandemic Isolation Complications: When Old Scams Become New Again?

Recently a friend of mine, in her 90s, asked me if I had ever heard of a particular company, one well known for its direct mail campaigns.  When she said that name, I recognized it as one that often focuses on magazine subscriptions with discounted prices, with a hefty dose of possible  "prizes" on the side.  I responded affirmatively and explained how I had tried to help a woman years ago who had become caught up in a cycle of purchases and "prizes" that left me with the firm opinion the real business of this company was preying upon people, tempting them with offers of  "rewards" into spending more and more money on items of little to no value. 

I thought that was the end of the matter.

Two weeks later, my friend asked again if I'd heard of that particular company.  This time I responded, "why are you asking?"  She explained she had filled out some kind of form or game card, to qualify for some kind of prize, and that she had bought a couple of items to have, in her words, a better chance to qualify for the prize.  She explained the form was fun and a bit of a "good mental challenge" -- requiring her to match questions and answers from different columns and paste stickers into the correct slots.  She mailed in the completed form. She was pleased when she received notification by mail that she had "won" a prize.  She eagerly called what she thought was a "toll free number" to claim her prize (I'd be curious about what her phone bill eventually shows about that call). 

When she made the call, a "nice woman" on the phone asked her to re-verify her identity and her award number, and her address and phone numbers, plus certain other personal details.  The woman announced the good news, that my friend had actually won two prizes with her submission.  

And then the true game began.  The "nice woman" on the phone asked my friend for her credit card or banking information (my friend couldn't quite remember which) so that the company could make a "direct deposit" of her prize.  

Fortunately, that is when my friend fully appreciated it was a scam.  She hung up.  

I worry, of course, that my friend's name and other information are now part of a new mailing list, that can be used again and again or sold by that company, as a possible "mark" for an even less principled predator.  

We talked about why she had taken the chance.  This woman has been a sophisticated business woman for most of her life, and no one would suggest to her that she has any sign of cognitive impairment, other than, perhaps, being a bit forgetful.  But she had been living in isolation for weeks, unable to be with other members of her extended family in real time because of health issues in the family, and she wanted something "to do."  She initially felt a bit of pride in being able to figure out what she thought was the trick to the game, resulting in her "win." 

I wonder how often this scenario -- or a more modern computerized or cellphone variation -- is playing out during the pandemic.