Thursday, January 16, 2020

Forgetfulness is Not Just for the Old

I always talk with my students about memory loss and what it might signal--but always when we talk about memory loss, or for them, forgetfulness, every one of them has experienced an episode of forgetfulness, whether misplacing their phones or losing their keys.   I was pleased to read a recent editorial in the New York Times by neuroscientist, Everyone Is Wrong.

Short-term memory contains the contents of your thoughts right now, including what you intend to do in the next few seconds. It’s doing some mental arithmetic, thinking about what you’ll say next in a conversation or walking to the hall closet with the intention of getting a pair of gloves.

Short-term memory is easily disturbed or disrupted. It depends on your actively paying attention to the items that are in the “next thing to do” file in your mind. You do this by thinking about them, perhaps repeating them over and over again (“I’m going to the closet to get gloves”). But any distraction — a new thought, someone asking you a question, the telephone ringing — can disrupt short-term memory. Our ability to automatically restore the contents of the short-term memory declines slightly with every decade after 30.

Given that everyone has forgetfulness, the author's next point is important:

The relevant difference is not age but rather how we describe these events, the stories we tell ourselves about them. Twenty-year-olds don’t think, “Oh dear, this must be early-onset Alzheimer’s.” They think, “I’ve got a lot on my plate right now” or “I really need to get more than four hours of sleep.” The 70-year-old observes these same events and worries about her brain health. This is not to say that Alzheimer’s- and dementia-related memory impairments are fiction — they are very real — but every lapse of short-term memory doesn’t necessarily indicate a biological disorder.

So, why might we focus on this with elders?  The author suggests elders have more memories to get through-it's going to take more time to remember a specific and generally it may take older folks a bit longer to remember things. 

This is a very interesting article that I plan to reference when I'm discussing issues regarding memory loss and dementia with my students.

January 16, 2020 in Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Other | Permalink | Comments (0)

Thursday, December 12, 2019

Are Physicians and Attorneys Speaking the Same Language When Talking About Competency or Capacity?

One of the most frequent search phrases that brings internet users to our Elder Law Prof Blog is the phrase "competency vs. capacity."  The search leads readers to a post from 2006 that summarizes an article written by two experienced psychiatrists, Phillip J. Resnick and Renee Sorrentino, originally published in December 2005 in Psychiatric Times. The article -- and often our blog post -- is frequently quoted or cited for the following passage:

This [clinical] consultation request reflects a common misconception regarding the issue of competence.  Competence is a legal state, not a medical one.  Competence refers to the degree of mental soundness necessary to make decisions about a specific issue or to carry out a specific act.  All adults are presume to be competent unless adjudicated otherwise by a court.  Incompetence is defined by one's functional deficits (e.g., due to mental illness, mental retardation or other mental condition), which are judged to be sufficiently great that the person cannot meet the demands of a specific decision-making situation, weighed in light of its potential consequences. . . . Only a court can make a determination of incompetence.

 

In contrast, psychiatric consultants can and should opine about a patient's capacity to make an informed decision or judgment.  Capacity is defined as an individual's ability to make an informed decision.   Any licensed physician may make a determination about capacity.  Forensic psychiatrists, however, are especially suited to assess a person's mental status and its potential for interfering with specific areas of functioning.  An individual who lacks capacity to make an informed decision or give consent may need to be referred for a competency hearing or need to have a guardian appointed.  The psychiatric consultation results in an opinion regarding whether such actions are indicated. 

 

Moreover, competence is issue specific.  Some physicians who misconstrue competence to be a global, black or white issue will ask psychiatric consultants for a broad consultation on whether the patient is competent or not.  The response of the psychiatric consultant should be, "Competent for what?" Poster 12.11.19 Cardozo Maimonides   

 

An additional challenge, however, is that in the years since that particular article was written, there has been a strong movement in law to dispense almost entirely with the "incompetent" label for legal purposes, especially when we are talking about the individual's ability to make informed decisions, whether for health care or other matters in life.  The incompetent label is viewed as unnecessarily and inappropriately stigmatizing.  The legal trend is to focus on capacity evaluations.  This trend also rejects global incompetency labels, and is often tied to an evaluation of function for specific tasks.  Perhaps the two professions are moving in the same direction when concerns are identified about cognition, focusing on an evaluation of the individual's "capacity for what?"   

Earlier this week, I was part of a fascinating discussion with a panel that included Dr. Samuel Hammerman, who wears many professional hats including that of a practicing pulmonary and critical care physician; Dr. Charles J. Duffy, a professor of neurology with deep professional interest in dementia; and Rabbi Ron Muroff, who set exactly the right tone for compassionate discussion.  Okay -- we all admitted our introduction sounded like the start of a joke about walking into a bar.....

We took up this topic of "capacity" or "competence" in response to two cases drawn from real life, where patients with serious physical health concerns also have compromised cognition and are rejecting admission or treatment at a hospital. Our audience, members of the Cardozo Society (lawyers) and the Maimonides Society (health care professionals) of the Jewish Federation of Greater Harrisburg, were very engaged and of enormous help in the discussion.  I walked out of the room energized and ready to get back to a long-planned article updating this topic (as soon as I find that elusive commodity, time!).  

December 12, 2019 in Cognitive Impairment, Current Affairs, Dementia/Alzheimer’s, Health Care/Long Term Care, State Cases | Permalink | Comments (1)

Wednesday, December 11, 2019

Blood Test for Alzheimer's?

Professor Naomi Cahn, the incoming chair of the AALS section on Aging & Law, sent me this recent article,  The Hunt for a Blood Test for Alzheimer’s Disease wherein "[r]esearchers hope circulating biomarkers will enable earlier detection and better monitoring of the neurodegenerative disorder—and perhaps help usher in new treatments." The article identifies updates in research and summarizes some blood tests being tried to help with diagnosis.

A number of questions and issues remain to be resolved before many of the biomarkers found in the blood are ready for use in trials, much less for clinical care... [with] [o]ne issue that researchers must account for is individual variability....  “People are so different [and] there’s a lot of things we still don’t know how to even control for in terms of statistical analyses.” Age and APOE4 carrier status, for example, can change the levels of some AD biomarkers independently of whether an individual has the disease.

The story also notes the existence of technical challenges and challenges of consistency. So far scientists haven't found the definitive diagnosis, nor the cure, but they are surely working hard to do so.

 

December 11, 2019 in Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Science | Permalink | Comments (0)

Tuesday, December 3, 2019

Stories About Alzheimer's

Two recent stories about Alzheimer's caught my eye, and I wanted to share them with you here.  The day after Thanksgiving, the Today Show ran a story, Caregiver for Alzheimer's Patient Shares Family's Struggles. The caregiver wife tells the story of their lives and the financial impact when her husband, a lawyer, was diagnosed at age 61 with early onset Alzheimer's. The summary describes the story, "Millions of Americans selflessly care for loved ones with Alzheimer’s disease and one family is opening up about their struggles on TODAY. Many people are calling for a nationwide program for caregivers, reports special anchor Maria Shriver." Senator Amy Klobuchar appears in the story, as her dad has Alzheimer's. The story mentions pending bills in Congress, including the Alzheimer's Caregivers Support Act. The link to the 3:22 minute video is available here.

The second story, an opinion piece in the New York Times, The Unending Indignities of Alzheimer’s   aired December 1, 2020. It highlights the obstacles family members face in trying to find the necessary care for the individual with Alzheimer's....

But while his family, and his physician, agree on the need for more advanced care, his health insurers do not. Medicare does not generally cover long-term nursing home care. Medicaid does, but only when it deems those services “medically necessary” — and that determination is made by insurance agents, not by the patient’s doctors. The state of New Jersey, where my parents live, recently switched to a managed care system for its elderly Medicaid recipients. Instead of paying directly for the care that this patient population needs, the state pays a fixed per-person amount to a string of private companies, who in turn manage the needs of patients like my father. On paper, these companies cover the full range of required offerings: nursing homes, assisted-living facilities and a suite of in-home support services. In practice, they do what most insurance companies seem to do: obfuscate and evade and force you to beg.

The author writes how the family is piecing together the care the best they can.  She writes "[t]he real problem is not my father’s level of functionality; it’s the lack of available Medicaid beds and the absurdly high cost of any meaningful alternative. For example, there’s a lovely assisted-living facility just two miles from my parents’ apartment. But it costs $8,000 a month, on average, and does not accept my father’s insurance."

BTW, know someone who is a caregiver? Even though National Caregivers' Month (November) is behind us, thank a caregiver.

December 3, 2019 in Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Health Care/Long Term Care, Medicaid, Medicare | Permalink | Comments (0)

Friday, November 15, 2019

Two Recent Articles About Dementia

Two articles in the news are worth mentioning, in case you missed them. First, the New York Times ran an article, Why Didn't She Get Alzheimer's? The Answer Could Hold a Key to Fighting the Disease. "Researchers have found a woman with a rare genetic mutation that has protected her from dementia even though her brain has developed major neurological features of the disease."  The article highlights a recently published study "in the journal Nature Medicine, [in which] researchers say the woman, whose name they withheld to protect her privacy, has another mutation that has protected her from dementia even though her brain has developed a major neurological feature of Alzheimer’s disease."  The article reminds us to not expect instant therapies-this is going to take time, but even so, it's still very positive news. "[T]his case comes at a time when the Alzheimer’s field is craving new approaches after billions of dollars have been spent on developing and testing treatments and some 200 drug trials have failed. It has been more than 15 years since the last treatment for dementia was approved, and the few drugs available do not work very well for very long."

Thanks to Professor Naomi Cahn for alerting me to this article.

The second article I wanted to mention also appeared recently in the New York Times. The Loneliness of Frontotemporal Dementiaoffers this description of the disease:

Frontotemporal dementia attacks people in their fifth or sixth decade, just as retirement comes within reach. Doctors believe the disease affects 60,000 people in the United States alone. Neurons in the front and side of the brain wilt, and along with them, images of peacefully growing old fade. Judgment and complex planning yields to chaotic disorganization. Inhibitions give way to impulsivity and hypersexuality, so that longtime faithful partners look to affairs and excessive pornography. Empathy turns to apathy. Obsessions and compulsions erupt. Language can become laborious; the meaning of words and objects can be lost, and fluent speech can dissolve into fragments of sentences with nonsensical grammar. Jarringly, memory remains largely untouched. Since brain areas that dictate personality are often the first to suffer, most people end up on a therapist’s couch long before finding their way to a neurologist.

The article examines the importance of support groups and how some individuals present with the disease.  There are some trials underway; "'[b]ecause frontotemporal dementia is often familial, we can get people into a trial before they have symptoms,' [according to one expert] 'By sequencing genes from a blood sample, we know which family members are probably going to get the disease. If we can slow down progression in those people, it’s virtually a cure.'”

 

November 15, 2019 in Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Health Care/Long Term Care, Other, Science | Permalink | Comments (0)

Friday, November 8, 2019

New Resources on Elder Abuse

Maybe it's just me, but there seems to be a lot of items in the news of late about elder abuse. Here are some new tools to add to your toolbox in the fight against elder abuse. The National Center on Elder Abuse (NCEA) and National Asian Pacific Center on Aging (NAPCA) have released 3 new fact sheets:

  1. Six Ways to Care for Yourself When Caring for Someone with Dementia 
  2. NAPCA: Emotional Abuse and
  3. NAPCA: Neglect

All of the fact sheets are available in several languages and are added to an extensive library of fact sheets.

 

November 8, 2019 in Consumer Information, Crimes, Current Affairs, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship | Permalink | Comments (0)

Thursday, October 3, 2019

Cognitive Impairments and Using Technology

Who among us doesn't have a smart phone or computer, or even a tablet? They are not only ubiquitous, they are integral, and perhaps essential, to our daily lives.  What happens when someone, due to cognitive impairments, is no longer able to use these devices? Kaiser Health News made that the subject of a recent article. The Delicate Issue Of Taking Away A Senior’s Smartphone describes the potential problems

Increasingly, families will encounter similar concerns as older adults become reliant on computers, cellphones and tablets: With cognitive impairment, these devices become difficult to use and, in some cases, problematic.

Computer skills may deteriorate even “before [older adults] misplace keys, forget names or display other more classic signs of early dementia,” Zorowitz wrote recently on a group email list for geriatricians. (He’s based in New York City and senior medical director for Optum Inc., a health services company.)

“Deciding whether to block their access to their bank accounts, stocks and other online resources may present the same ethical dilemmas as taking away their car keys.”

Consider that some folks stay in touch with family and friends through their digital lives. But also consider how scammers can use email to perpetrate a fraud.  The article notes a difficulty in using these devices---a difficulty that did not previously exist--may be an indicator of cognitive issues signaling a need for a comprehensive exam of cognition.  Family can be helpful, but still realize there are issues

[B]eware of appropriating someone’s passwords and using them to check email or online bank or brokerage accounts. “Without consent, it’s a federal crime to use an individual’s password to access their accounts,” said Catherine Seal, an elder-law attorney at Kirtland & Seal in Colorado Springs, Colo. Ideally, consent should be granted in writing.

The article notes that some with dementia lose interest in their devices, but that is not true for everyone-it depends on the type of cognitive impairment.  "More difficult, often, are situations faced by people with frontotemporal dementia (FTD), which affects a person’s judgment, self-awareness and ability to assess risk." The article then profiles the experiences of a noted elder law attorney and friend of mine, whose husband as an FTD diagnosis. She shared the steps she takes to keep her husband safe online.

Read the entire article, especially the last part where personal experiences and tips are shared.  It's an important topic-we all need to think about this and plan for the eventuality in case we need to give up our digital word.

October 3, 2019 in Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship, Health Care/Long Term Care, Other | Permalink | Comments (0)

Tuesday, September 24, 2019

Elder Justice Policy Highlights

USC has published  Elder Justice Policy Highlights for March-August 2019. The introduction explains that

"[t]he elder justice legislation found in this document was elicited and finalized from the National Center on Elder Abuse (NCEA) Listserv and independent websites in August 2019. The compilation is intended to reflect highlights across the nation and does not include all legislation related to elder justice. However, updates will be sent quarterly and states are encouraged to send updates on significant legislative action to Ageless Alliance. This document reflects activity in 17 states and highlights at the federal level.

The report divides the information by federal and state, includes a summary for each development as well as a link to view the information online. It also includes a section of pending activity that deserves a look.

This is a great resource and provides students with a quick snapshot of activities across the country.

September 24, 2019 in Consumer Information, Current Affairs, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship, Federal Statutes/Regulations, Health Care/Long Term Care, State Statutes/Regulations | Permalink | Comments (0)

Monday, September 9, 2019

CAP-Impact Podcast: Data Driven Practices for Protecting Older Adults

Recently I had the enjoyable experience of being interviewed by Jon Wainwright, Project Manager for the Capital Center for Law and Policy at McGeorge School of Law, University of the Pacific.  He asks great questions.  His podcast project, CAP-Impact, is a well-developed resource to foster nonpartisan understanding of law and policy, offering a wide array of discussion topics, ranging from the role of lobbyists to science-based support for law reform. 

Katherine Pearson Grant Project Student Group Photo-001 Cropped


The interview focused on the Guardian Education Project I'm working on currently with community stakeholders, law students (Summer 2019 Team pictured here)  and faculty, with financial support from Penn State University.  This project is an outgrowth of the Pennsylvania Supreme Court's  Elder Law Task Force that recommended changes in procedures and policies governing adult guardianships in Pennsylvania, including better education for new guardians.  

For the actual podcast -- about 25 minutes in length -- go to  Episode 53: Data Driven Best Practices for Protecting the Elderly with Professor Katherine Pearson

Don't forget to "like" it -- or whatever is appropriate as support for Jon's podcast project.  As he amusingly pointed out, "elder law" isn't usually considered to be a sexy area for researchers, but as he demonstrates, what happens with older adults or others in potential risk of neglect or exploitation, is important!  

September 9, 2019 in Current Affairs, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship, Ethical Issues, Statistics | Permalink | Comments (0)

Wednesday, September 4, 2019

Assisted Living-Is It the Right Option for Assistance in Living?

My colleague and dear friend Professor Bauer, sent me the link to a recent op-ed in the New York Times,  How Not to Grow Old in America.The assisted living industry is booming, by tapping into the fantasy that we can all be self-sufficient until we die.

Assisted living seems like the solution to everyone’s worries about old age. It’s built on the dream that we can grow old while being self-reliant and live that way until we die. That all you need is a tiny bit of help. That you would never want to be warehoused in a nursing home with round-the-clock caregivers. This is a powerful concept in a country built on independence and self-reliance.

The problem is that for most of us, it’s a lie. And we are all complicit in keeping this dream alive.

The author notes that the ALF industry has a financial incentive to market their product and it's appealing to the kids of those who reside in ALFs.  The author writes, "[t]he irony of assisted living is, it’s great if you don’t need too much assistance. If you don’t, the social life, the spalike facilities, the myriad activities and the extensive menus might make assisted living the right choice. But if you have trouble walking or using the bathroom, or have dementia and sometimes wander off, assisting living facilities aren’t the answer, no matter how desperately we wish they were." Further, the author offers data that most of these residents need more care than that provided and argues in favor of regulation, using several actual cases as illustrations to support the call for regulation.

We need to let go of the ideal of being self-sufficient until death. Just as we don’t demand that our toddlers be self-reliant, Americans need to allow the reality of ourselves as dependent in our old age to percolate into our psyches and our nation’s social policies. Unless we face up to the reality of the needs of our aging population, the longevity we as a society have gained is going to be lived out miserably.

September 4, 2019 in Consumer Information, Current Affairs, Dementia/Alzheimer’s, Federal Statutes/Regulations, Health Care/Long Term Care, Housing, Other, Retirement, State Statutes/Regulations | Permalink | Comments (1)

Tuesday, August 27, 2019

Napping More Than Usual? Read This Article.

We have all had that after lunch afternoon slump where we just want a nap. Do you find yourself napping more than usual? There is a new study on changes to sleep-wake cycles and Alzheimer's. For the non-scientist like me, here's the USA Today story:  Napping more? That could be an early symptom of Alzheimer's, new study says.

So wait, don't panic if you are a normal napper.  Here's a segment from the article that explains: "People who develop Alzheimer's tend to sleep more during the day, taking naps or feeling drowsy and dosing off. Sometimes, they wake up during the night; that's called fragmented sleep .... If napping is a part of your routine on a regular basis though, you don't need to worry about taking an afternoon snooze, or mid-morning for that matter."  So it's all about the change in sleep patterns. Whew.

Here's the abstract for the article about the study.

Introduction

Sleep-wake disturbances are a common and early feature in Alzheimer's disease (AD). The impact of early tau pathology in wake-promoting neurons (WPNs) remains unclear.

Methods

We performed stereology in postmortem brains from AD individuals and healthy controls to identify quantitative differences in morphological metrics in WPNs. Progressive supranuclear palsy (PSP) and corticobasal degeneration were included as disease-specific controls.

Results

The three nuclei studied accumulate considerable amounts of tau inclusions and showed a decrease in neurotransmitter-synthetizing neurons in AD, PSP, and corticobasal degeneration. However, substantial neuronal loss was exclusively found in AD.

Discussion

WPNs are extremely vulnerable to AD but not to 4 repeat tauopathies. Considering that WPNs are involved early in AD, such degeneration should be included in the models explaining sleep-wake disturbances in AD and considered when designing a clinical intervention. Sparing of WPNs in PSP, a condition featuring hyperinsomnia, suggest that interventions to suppress the arousal system may benefit patients with PSP.

The full study is available here.

August 27, 2019 in Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Health Care/Long Term Care, Other, Science, Statistics | Permalink | Comments (0)

Monday, August 26, 2019

Abuse of SNF Resident On Video

This is just a sad story.  Margaret Collins resident of a SNF, was abused by those tasked with caring for her, according to an article in Huffington Post. Family Sues After Video Shows Nursing Home Workers Taunting Elderly Dementia Patient summarizes the events. Read the story and watch the video. It can be a good jumping off point for a discussion of the importance of resident rights, and litigation and regulations.   Other stories about this are available here,  here , here, and here to include a few. Additional info is available on the blog of the attorneys for the plaintiffs.

Thanks to Professor Dick Kaplan for alerting me to the story.

August 26, 2019 in Cognitive Impairment, Consumer Information, Crimes, Dementia/Alzheimer’s, Health Care/Long Term Care, State Cases, State Statutes/Regulations | Permalink | Comments (0)

Thursday, August 22, 2019

Filial Friday: Making Decisions about Where and How You Will Live as You Age

I suspect every elder law attorney has experienced the Friday Syndrome, where an individual calls the office to seek an emergency appointment because he or she has flown in to visit parents and has discovered new chaos.  Perhaps it is a parent who is much more ill than anyone was letting on during phone calls.  Perhaps it is discovering a huge pile of unpaid bills with no explanation for why they are overdue.  Perhaps it is because the parents have said -- finally -- we need to make a decision and we want to make it today.

There are many variations on the Friday Syndrome, and frequently they involve a common human trait, procrastination, or as my fifth grade teacher called it, "The Scarlett O'Hara Syndrome."  I didn't understand what she meant at the time, having not yet seen Gone with the Wind with Scarlett's  classic last line, "After all, tomorrow is another day."  But I did eventually figure out that my teacher was referring, in less than favorable terms, to my personal approach to homework assignments!

A friend who I often run into during early morning swims, attorney and financial planning advisor Alvin Blitz, shared with me a variation on the theme with his recent column on "Taking Control of Your Destiny."  He recounts lessons from his 20 years of travel on behalf of Masonic Villages, as he works with individuals and couples who are thinking about a move to a continuing care retirement community (CCRC).  He starts with the premise that while change is a difficult word to swallow, "resisting change usually results in a bad outcome."  He describes two scenarios involving couples facing decisions about whether to stay in their own homes.  

In the successful scenario, the couple began their reckoning with age while still in their early 70s, making a preliminary decision to downsize and live in a townhouse in a 55 plus retirement community, spending many years enjoying their neighbors and participating in activities geared to their stage in life.  "As time went on, the husband was diagnosed with dementia, which required them to make another hard decision," reports Alvin. Eventually they decided that they needed a place where the husband's mental status could be accommodated and the wife would be able to stay active and supported in her new roles with her husband.  In the CCRC, they were able to enjoy a "balance of independence and quality of life together while their health problems are addressed, without needing to rely on other individuals to make life decisions for them."

In the less successful scenario, the couple tried to stick in out in their 1950's castle.  "Finally,  the inevitable happened. the husband had a debilitating stroke. Family members from afar rallied to help, but time took its toll.  The wife had medical problems and landed in the hospital.  Decisions on care and where to live became limited and were thrust upon them by their circumstances."   

Alvin reminds us that making affirmative decisions about housing and care as you age can lead to a much "softer landing" than an alternative that depends on happenstance.   He also explains, helpfully, what it might mean to live in a CCRC where there is a clear mission, such as the fraternal mission at Masonic Villages where members of the Masonic organizations (including Eastern Star) can receive continuing compassionate care, even if the individual no longer has assets to pay for care.  

For more, read Alvin Blitz' August 2019 article, Taking Control of Your Destiny, from  his newsletter, appropriately called "The Blitz." 

 

  

August 22, 2019 in Consumer Information, Current Affairs, Dementia/Alzheimer’s, Ethical Issues, Health Care/Long Term Care, Housing | Permalink | Comments (0)

Wednesday, August 14, 2019

Caregiver Guilt: "When Will You Be Back?"

Recently I was talking with a friend about the challenges of family caregiving.  She regularly drives many miles to help her mother, who has dementia and is living in another city in her own home.  My friend tried inviting her mother to share the daughter's home.  To put it mildly, that plan did not work. 

Her mother wanted to go back to her own home.  Paid in-home caregivers are often essential components of any such plan, and my friend, as an only child, is the person "on call" whenever one of them cancels at the last minute, as well as visiting regularly to plan meals, do shopping, take her mother on outings and the many loving tasks that tend to fall to family members.   

My friend says that one of the hardest parts of each visit is that her mother always asks, "when will you be back?"  The mother probably isn't intending to put pressure on her daughter, but the pressure is still there, accompanied by the daughter's thought, "Am I doing enough? -- Should I quit my job and move here to be closer to my mother?"  

My sister felt this kind of pressure with our mother, even though she spent almost every evening with her, especially during her last year.  My sister would finish her long day as a primary school administrator and drive 45 minutes in rush hour traffic to be with Mom at dinner and to visit with her while she watched some television, helping her get ready for bed.  And my mother would ask ,"Will I see you tomorrow?"  "Of course,"  was the usual answer.   I know my sister felt guilt, even though she was doing everything imaginable to ease the strain for our mother, as her daily life became complicated by deepening dementia.

My father had slightly different questions for me as the "out-of-state" daughter.   As soon as I arrived from my latest flight on good ol' Southwest Airlines plus a taxi cab drive, he wanted to know,  "When are you leaving?"  I would chuckle and say in mock protest, "I just got here; you can't get rid of me yet." (Of course, with dementia, such questions are often asked not just once, but are repeated multiple times in the course of the same hour.) Eventually I realized that what Dad enjoyed the most was the break in the routine from being trapped at home with dementia, as he would usually ride along with whomever was taking me back to the airport.   He liked rides in general, but he especially appreciated a car trip with a purpose, a purpose he still understood.  

My mother had her own variation for me.  She would be startled when she realized I was leaving at the end of a visit, and she would ask with a worried frown, "Will you be back in time for Christmas?" Whether it was the coldest day in January or the hottest summer day in Phoenix she would ask me about my Christmas plans.  But, that's not  a bad "default" setting for someone with dementia, is it? 

I was always able to say, with sincerity, that yes, I would be back in plenty of time for Christmas. 

August 14, 2019 in Cognitive Impairment, Current Affairs, Dementia/Alzheimer’s, Health Care/Long Term Care | Permalink | Comments (1)

Thursday, August 8, 2019

Early Diagnosis of Alzheimer's Through Testing

So we don't be on the cusp of a cure for Alzheimer's but recent stories indicate the medical folks might be getting closer to diagnosing it. First, the New York Times reported that we may soon have a blood test that can diagnose it.

A Blood Test for Alzheimer’s?  It’s Coming, Scientists Report

For decades, researchers have sought a blood test for beta amyloid, the protein that is a hallmark of Alzheimer’s disease. Several groups and companies have made progress, and [last]
Thursday, scientists at Washington University in St. Louis reported that they had devised the most sensitive blood test yet.

The test will not be available for clinical use for years, and in any event, amyloid is not a perfect predictor of Alzheimer’s disease: Most symptomless older people with amyloid deposits in their brains will not develop dementia.

But the protein is a significant risk factor, and the new blood test identified patients with amyloid deposits before brain scans did. That will be important to scientists conducting trials of drugs top revent Alzheimer’s. They need to find participants in the earliest stages of the disease.

Since we can't cure it, why do we want to diagnose it?

There is no treatment for Alzheimer’s, and very early diagnosis of any disease can be problematic, since it may not progress. So the first use for this blood test will probably be to screen people for clinical trials of drugs to prevent Alzheimer’s disease, said Dr. Michael Weiner, a neurologist at the University of California, San Francisco.

Ok, a blood test. Pretty easy, not too invasive.  Here's another test on the horizon, according to another article, again in the New York Times: A Brain Scan May Predict Alzheimer’s. Should You Get One? There is "criteria developed by the Alzheimer’s Association and nuclear medicine experts, which call for PET scans only in cases of unexplained or unusual symptoms and unclear diagnoses.... But as evidence mounts that brain damage from Alzheimer’s begins years before people develop symptoms, worried patients and their families may start turning to PET scans to learn if they have this biomarker."  These tests are expensive and "[a]myloid plaques occur commonly in older people’s brains, but not everyone with amyloid will develop dementia, which probably involves multiple factors. Nor does a negative PET scan mean someone won’t develop dementia."

There's a lot of research being done and we all owe a big thank you to the researchers fighting this and all the other diseases out there that threaten us as we age.

August 8, 2019 in Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Health Care/Long Term Care, Other, Science | Permalink | Comments (0)

Thursday, July 25, 2019

Bereavement, Caregiving, and Immigration

I've written about this combination of topics before.  I can't quite believe I'm doing so again.  

My sister and I lost our last parent on Friday.  As with our father, who died in 2017, our mother's final months were complicated by dementia.  Thankfully her death was gentle -- she just sort of wound down at age 93 (and 9 months -- isn't it amusing how we start counting the months again, as people tend to do when someone is nearing 5 and a half years of age).  

Both of our parents had full and fulfilling lives, or as one of our friends commented, "your mother used the full runway."  The care team at an assisted living community that specializes in dementia care came to know both of our parents well, and our bereavement was matched by the tears of many of the individual caregivers, each of whom had their own memory or story to share.  As several of them noted, in her last days Mom seemed determined to "find" Dad.  And, of course, we like to think she did find him.

But one additional complication was that as our mother reached her last hours, one caregiver who has worked for our family for several years, and that caregiver's mother, who has worked her way from CNA to head of a care team, were both coping with their own worries and grief.  Both of them are U.S. citizens, but as is often true in the Southwest, a family member, a husband, is not documented.  Recently he was picked up by ICE.  No one knows quite where he is yet, but the family members know they are likely to face hard choices once he is deported.  The family members must decide how and where they will live.  My parents' care team -- and by extension the community of residents at the assisted living center -- could lose two more skilled and devoted caregivers.  The fabric of aging care grows ever more fragile. 

July 25, 2019 in Current Affairs, Dementia/Alzheimer’s, Ethical Issues, Federal Statutes/Regulations, Health Care/Long Term Care, International | Permalink | Comments (0)

Applications for Fellows at the Global Brain Health Institute

The Global Brain Health Institute is taking applications for those who are interested in becoming an Atlantic Fellow for Equity in Brain Health at the GBHI.

The Atlantic Fellows for Equity in Brain Health program at GBHI is an opportunity to elevate ...r dedication and contributions to brain health. Applicants should demonstrate a commitment to brain health and health care policy, as well as an ability to implement effective interventions in their home community and to become a regional leader in brain health.

GBHI welcomes applications from people living anywhere in the world and working in a variety of professions. Fellows are typically early and mid-career. At least one-half of fellows will come from outside the US and Ireland, with an initial emphasis on Latin America and the Mediterranean.

Thanks to Sarah Hooper, Executive Director & Adjunct Professor of Law, UCSF/UC Hastings Consortium on Law, Science & Health Policy, Policy Director | Medical-Legal Partnership for Seniors, Senior Atlantic Fellow for Health Equity | Atlantic Institute for sending me the announcement.

July 25, 2019 in Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Health Care/Long Term Care, Other, Science, Statistics | Permalink

Friday, July 19, 2019

Red Flags That Might Signal Dementia

The Washington Post recently ran an important article, ‘Well, that was a weird moment’ and other signs of dementia family members should watch for. With "[a]bout 5.8 million people in the United States are living with Alzheimer’s and dementia, said Heather Snyder, senior director for medical and scientific operations for the Alzheimer’s Association. The number is expected to rise to 14 million by 2050. Approximately 16 million people are caregivers." So it is important to help caregivers understand what might be normal aging and what might be a red flag.

So what should family members look for? What is attributable to normal aging as opposed to cognitive decline associated with dementia?

It is common to misplace keys or eyeglasses or walk into a room with a task in mind and forget what that is. Those are often attributable to multitasking or stress and are considered part of normal aging.

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Here are some things to look for:

• Notes with reminders about simple tasks.

• When neighbors or friends share concern.

• Bills not paid or overpaid.

Physical appearance — someone who was always put together suddenly wears wrinkled or dirty clothing.

• Weight changes.

• Driving issues: fender benders, parking in the wrong spot.

• Any behavior that is out of the ordinary.

• Picking up an object and using it inappropriately.

• Saying things that are inappropriate — “no filter.”

• Changes in speech, personality.

One expert describes what we are looking for like this: "take notice of what she calls “well, that was a weird moment.” For instance,[the expert] was assessing a woman and did not see any deficits — until the woman asked if she could make a phone call and picked up the television remote." The article stresses the importance of planning and being proactive. Read it, so next time you forget where you left your keys, you won't worry as much.

July 19, 2019 in Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Health Care/Long Term Care | Permalink | Comments (0)

Monday, July 8, 2019

Two New Articles to Add to Your Reading List

Professor Tara Sklar emailed me to let me know of the publication of two new articles. Her first, Preparing to Age in Place: The Role of Medicaid Waivers in Elder Abuse Prevention appears in 28 Annals of Health Law 195 (2019) and is also available on SSRN.

Here is the abstract

Over the last three decades, there has been a steady movement to increase access to aging in place as the preferred long-term care option across the country. Medicaid has largely led this effort through expansion of state waivers that provide Home and Community-Based Services (HCBS) as an alternative to nursing home care. HCBS include the provision of basic health services, personal care, and assistance with household tasks. At the time of this writing, seven states have explicitly tailored their waivers to support aging in place by offering HCBS solely for older adults, individuals aged 65 and over. However, there is growing concern about aging in place contributing to greater risk for social isolation, and with that increased exposure to elder abuse. Abuse, neglect, and unmet need are highly visible in an institutional setting and can be largely invisible in the home without preventative measures to safeguard against maltreatment. This article examines the seven states with Medicaid HCBS waivers that target older adults, over a 36-year period, starting with the first state in 1982 to 2018. We conducted qualitative analysis with each waiver to explore the presence of safeguards that address risk factors associated with elder abuse. We found three broad categories in caregiver selection, quality assurance, and the complaints process where there are notable variations. Drawing on these findings, we outline features where Medicaid HCBS waivers have the potential to mitigate risk of elder abuse to further support successful aging in place.

The second article, Elderly Gun Ownership and the Wave of State Red Flag Laws: An Unintended Consequence That Could Help Many will be published in the Elder Law Journal. It is currently available on SSRN here.

Here is the abstract

There is rising concern among health professionals and in legal circles to address gun ownership for older adults who display signs of cognitive decline, including dementia. However, elderly gun ownership remains underexamined, partly because incidents of gun violence among the elderly tend to occur in domestic settings and are much less visible than shootings in public areas. In contrast, there is widespread attention to curb mass gun violence through state legislation. Specifically, red flag laws, also known as Extreme Risk Protection Orders, have doubled in 2018 with thirteen states enacting red flag laws and over thirty states having introduced or planning to introduce this legislation. Although red flag laws were not intended to address elderly gun ownership, they uniquely apply where other gun control laws fall short, as red flag laws provide the legal process to temporarily remove access to guns for persons believed to be at an elevated risk of harming themselves or others.

This Article surveys the thirteen states that have enacted red flag laws and analyzes key legislative elements across these states. The state laws have notable variations, including authorized persons who can petition a court for a protection order, standard of proof requirements, and the length of time an order is in effect. These variations have implications for elderly gun owners and their families, particularly in how they relate to the climbing rates of cognitive decline, suicide in late life, and elder abuse. The current wave of red flag laws across the country offer an opportunity to provide greater awareness around elderly gun ownership and prevent crises from becoming tragedies.

I was particularly interested in this second piece, because we recently offered a webinar at Stetson for elder law attorneys on dementia and gun ownership.  Information about the webinar and how to order an audio download are available here.

Congrats Professor Sklar and thanks for letting us know about your articles!

July 8, 2019 in Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Federal Statutes/Regulations, Health Care/Long Term Care, Medicaid, Programs/CLEs, State Statutes/Regulations | Permalink | Comments (1)

Thursday, July 4, 2019

Jelly Drops For Folks with Dementia

Sounds yummy, doesn't it.  My dear friend, colleague and frequent blog reader ran across a story about Jelly Drops  which are described on the company's website as "Hydrating treats for people with dementia." The article sent by my friend explains that "they’re hydrating treats shaped like raindrops that come in a treat box with a see-through lid. The drops are meant to be appealing to people with dementia, as well as easy to grasp and swallow, and they contain water and electrolytes to help keep elderly patients hydrated."  Both the story and the website explain the inventor's motivation for creating the product.  The photo on the website shows colorful and yummy looking pieces. Hopefully the product will be available before long. Anyone who has had a relative with hydration issues will understand the value of a product such as this.

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July 4, 2019 in Consumer Information, Current Affairs, Dementia/Alzheimer’s, Food and Drink, Other | Permalink | Comments (0)