Wednesday, March 14, 2018

Dementia-Friendly City in Heart of Silicon Valley

Somehow I never thought I'd right that phrase. Yet, Palo Alto is taking steps to become a dementia-friendly city! Palo Alto looks to become a 'dementia-friendly city' explains that

Palo Alto is among a growing number of communities around the world that have begun to look at how government, businesses and residents can work together to provide better resources — like training for first responders, community support networks and policies that better aid employees who are also caregivers — for the expanding population of aging adults who are being diagnosed with dementia.

Palo Alton has a little more than 30,000 residents now who have dementia (including Alzheimer's) and it is estimated that that number will exceed 50,000 by 2030. "As part of its broader push for an "age-friendly Silicon Valley," Santa Clara County last year joined Dementia Friends, a global movement begun by the Alzheimer's Society in the United Kingdom to change the way people think about dementia."

A public hearing on this is scheduled for late March.  Thanks to my colleague and dear friend Mark Bauer for alerting me to this article.


March 14, 2018 in Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Health Care/Long Term Care, Other | Permalink | Comments (0)

Tuesday, March 13, 2018

Expanding the Right to Physician-Aided Dying?

The Washington Post recently ran an article about efforts underway by some folks to expand Oregon's physician-aided dying law to include those individuals who do not have terminal illnesses. In Oregon, pushing to give patients with degenerative diseases the right to die explains efforts to expand the scope of Oregon's law to cover those with degenerative diseases, such as "[p]eople with Alzheimer’s, Parkinson’s, Huntington’s, multiple sclerosis and a host of other degenerative diseases [who] are generally excluded from the Oregon law." Why? you might ask. "[B]ecause some degenerative diseases aren’t fatal. People die with Parkinson’s, for example, not because of it. Other diseases, such as advanced Alzheimer’s, rob people of the cognition they need to legally request the suicide medications."

The article notes that this effort isn't limited to just Oregon. In fact, there are "[r]elatively modest drives ... afoot in Washington state and California, where organizations have launched education campaigns on how people can fill out instructions for future caregivers to withhold food and drink, thereby carrying out an option that is legal to anybody: death by starvation and dehydration. (It is often referred to as the “voluntarily stopping eating and drinking” method.)"

Interestingly, the article reports that not all in the right to die movement are in favor of broadening the law.  In fact "groups such as Compassion & Choices, the nation’s largest right-to-die organization, and the Death With Dignity National Center, a main author of the original law, have little appetite for widening access to lethal drugs in the states where medically assisted suicide already is legal."

These initiatives aren't just limited to the U.S. The story reports in Canada The Quebec "provincial government is studying the possibility of legalizing euthanasia for Alzheimer’s patients. Unlike medically assisted suicide, a medical doctor would administer the fatal dose via injection. A survey in September found that 91 percent of the Canadian province’s medical caregivers support the idea."

The Oregon legislature has taken the first step,  the passage last month of legislation to investigate "how to improve the process of creating and carrying out advance directives. Gov. Kate Brown (D) is expected to sign it."

The article also reminds us of the Harris case where Mrs. Harris, with an advance directive, was spoon fed by the facility where she resided.  There have been a number of folks requesting language added to their advance directives to avoid the spoon-feeding issue according to the attorney for Mr. Harris.

March 13, 2018 in Advance Directives/End-of-Life, Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Health Care/Long Term Care, State Statutes/Regulations | Permalink | Comments (1)

Thursday, March 8, 2018

The Toughest Issue for Protective Service Agencies? Self Neglect...

Boy, did this New York Times piece by always interesting Paula Span resonate for me.  I spent several years serving as designated counsel for individuals who were facing unwanted intervention by Adult Protective Services. The issue of self-neglect is just plain tough -- and it doesn't get any easier with age.  From the article:

[T]he state adult protective services agency sent a caseworker to the man’s home. She found an 86-year-old Vietnam veteran in a dirty, cluttered house full of empty liquor bottles. His legs swollen by chronic cellulitis, he could barely walk, so he used a scooter. He missed doctor’s appointments. He had the medications he needed for cellulitis and diabetes, but didn’t take them. Though he had a functioning toilet, he preferred to urinate into plastic gallon jugs. He didn’t clean up after his dogs. He wasn’t eating well. . . . 


In the Texan’s case, “he wasn’t happy that A.P.S. was there, and he denied that he was being exploited,” said Raymond Kirsch, an agency investigator who became involved. “He also denied that he had a drinking problem.”


Grudgingly, he allowed the agency to set up a thorough housecleaning, to start sending a home care aide and to arrange for Meals on Wheels.


But on a follow-up visit a month later, the caseworker found her client markedly deteriorated. His swollen legs now oozed. He’d become personally filthy and was ranting incoherently. She returned with an ambulance and a doctor who determined that the client lacked the capacity to make medical decisions.


Off he went to a San Antonio hospital, under an emergency court order. The caseworker locked up the house and kenneled the dogs. . . . 

Our special thanks to University of Illinois Law's Professor Dick Kaplan for pointing us to this article.  For the outcome of this particular case, read to the end of the full article, Elder Abuse: Sometimes It's Self-Inflicted.

March 8, 2018 in Current Affairs, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship, Estates and Trusts, Ethical Issues, Health Care/Long Term Care, State Cases, State Statutes/Regulations | Permalink | Comments (0)

Wednesday, March 7, 2018

Family Fights Over Care for Mom:Subject of Academy Award

We all know that family dynamics are not always the most pleasant and can lead to strife, stress and litigation. Kaiser Health News ran a recent story that details a conflict within a family. A Tale of Love, Family Conflict And Battles Over Care For An Aging Mother focuses on the story “'Edith + Eddie,' a short documentary vying for an Academy Award Sunday,[which] is a gripping look at a couple in their 90s caught up in an intense family conflict over caring for an aging parent." The short film starts a few months after the couples' marriage and ends (spoiler alert) "months later with the couple being separated by Edith’s court-appointed legal guardian, with police on the scene, and Edith taken off abruptly to Florida. Shockingly, Eddie died only a few weeks later." Interwoven with the love story are allegations within Edith's family of fighting siblings, guardianship and financial concerns.

The movie is focused on the love story. The columnist took a broader approach, diving into the family dynamics, finding "[t]hree daughters in distress over the care of an aged mother and roiled by disputes played out in courtrooms among far-flung siblings." Eventually two of the three daughters were named co-guardians , but even so, the road was bumpy; "the sisters for years had bickered over what was best for their mother."  The marriage occurred after the guardianship was established, so the question of the validity of the marriage was also at play here.  The co-guardians didn't work well together. One wouldn't consult the other and moved her mother frequently without telling the other family members of the mother's location. Finally a non-relative guardian was appointed, but even she wasn't able too keep track of the mother's location.  The guardian wanted Edith to go to Florida for a bit so the guardian could find an appropriate ALF for her.  After more hurdles, Edith finally went to Florida where her health slowly began to improve.

The story ends with this "Edith passed away last March of natural causes at the age of 98, after living with her daughter in Florida through the end of her life. She never went to an institution. Her home wasn’t sold until after her death; there was no attempt to plunder her estate by lawyers or family members. That’s the other story of Edith+Eddie."

Watch the film. Read the article.  Lots of class discussion could come out of this.

March 7, 2018 in Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship, Film, Health Care/Long Term Care | Permalink | Comments (0)

Wednesday, February 28, 2018

Conversations on Living with Dementia

Kaiser Health Network offered this moderated discussion with 5 panelists, Conversation On Living Well With Dementia.

On Feb. 13, Kaiser Health News hosted an informative and important discussion about improving care and services for people with dementia and supporting their caregivers. It was opportunity to learn from experts in the field about the challenges and difficulties facing the patient, the caregiver, the community and policymakers. Topics included understanding the stages of dementia from a medical, social, psychological and environmental perspective (it’s not just memory loss); how to find help; how to manage difficult behaviors; and understanding medications for people with dementia.

The 90 minute discussion can be viewed by clicking here.

February 28, 2018 in Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Health Care/Long Term Care, Programs/CLEs, Webinars | Permalink | Comments (0)

Tuesday, February 27, 2018

U.S. Supreme Court Agrees to Hear Death Penalty Case; Inmate Has Suffered Multiple Strokes & Dementia

One of my well-rounded Contracts students, Andrew Ford, pointed out to me that this week the Supreme Court agreed to hear the case of Madison v. Alabama, wherein the issue is whether execution of a prisoner violates the 8th Amendment if the inmate, who has experienced multiple strokes and vascular dementia, is now severely impaired and no longer has any memory of his crime.  From the Petition for Writ of Certiorari:

[T]he State seeks for the second time to execute Vernon Madison, a 67-year-old man who has been on Alabama’s death row for over 30 years. Mr. Madison suffers from vascular dementia as a result of multiple serious strokes in the last two years, and no longer has a memory of the commission of the crime for which he is to be executed. His mind and body are failing: he suffers from encephalomacia (dead brain tissue), small vessel ischemia, speaks in a dysarthric or slurred manner, is legally blind, can no longer walk independently, and has urinary incontinence as a consequence of damage to his brain.

Thank you, Andrew!  Here's the link to comprehensive coverage on the case from SCOTUS Blog

February 27, 2018 in Cognitive Impairment, Crimes, Current Affairs, Dementia/Alzheimer’s, Ethical Issues, Federal Cases, Federal Statutes/Regulations | Permalink | Comments (0)

Tuesday, February 13, 2018

A Seldom Discussed Legal Issue? The Problem of Smokers with Dementia

My family has been struggling with the issue of what to do about the increasing safety risk of a family member who, at age 90+, is still a smoker, but now also a smoker with dementia. Our family has long since given up on the direct health risk of smoking for the individual.  But the evidence of a greater risk is everywhere:  small burn holes in the carpets, on the arms of a favorite chair, and even melted spots on the linoleum on the kitchen floor beneath the smoker's chair.  The latest sign of a serious problem frightened us the most -- a burned hole in the sheets of the bed.  Before dementia this individual never smoked in bed; but with dementia, plus problems walking and sitting in a chair, she began to insist on her "first" morning cigarette while still in bed.  The situation requires constant monitoring -- but even that is a challenge as it can be hard to find companions who can tolerate this level of smoking.  

There is plenty of evidence the risk is more than just to the smoker's health.  See, for example, the news link below for a report on a fire that caused the death of the elderly smoker and injuries to the firefighters. 

For discussions of approaches to managing, if not stopping the elder's smoking, see also on "Should I Take Cigarettes Away From My Mother, Who has Alzheimer's?  One person commenting on the column, describes the situation with his own mother as a "dreadful problem. . . . It is the most difficult situation I have ever faced with her and there is no easy solution." Another person provided the following history:

The problem has miraculously resolved itself with the help of some very skilled caregivers. I had to move my [92 year old] mother to a Memory Unit in an Assisted Living Facility. They agreed that she could have 4 cigarettes per day under their supervision. They made an exception for her. For the first several months she asked repeatedly all day long for a cigarette. They patiently distracted her by redirecting her attention or promising a cigarette after dinner, whatever. It didn't stop her begging for a smoke over and over but now, at age 94 and with advancing dementia, she has almost forgotten that she's a smoker. 

That's an important caveat -- with dementia, at 94 -- she has "almost forgotten that she's a smoker." 

February 13, 2018 in Cognitive Impairment, Current Affairs, Dementia/Alzheimer’s, Ethical Issues, Health Care/Long Term Care | Permalink | Comments (0)

Monday, February 12, 2018

Kaiser Health Offers Q & A on "Living Well with Dementia" on Tuesday, Feb 13

Sorry for the late news but Kaiser Health News is offering a live discussion via Facebook Live! and Twitter on "Living Well with Dementia" on Tuesday, February 13, from 12:30 to 2:00 p.m. Eastern Time.

Hear are details:  

Join Kaiser Health News on Tuesday, Feb. 13, from 12:30 to 2:00 p.m. ET for an informative and important discussion about improving care and services for people with dementia and supporting their caregivers. It’s an opportunity to learn from experts in the field about the challenges and difficulties facing the patient, the caregiver, the community and policymakers. Topics will include understanding the stages of dementia from a medical, social, psychological and environmental perspective (it’s not just memory loss); how to find help; how to manage difficult behaviors; and understanding medications for people with dementia. 

Kaiser Health News’ “Navigating Aging” columnist Judith Graham will moderate a discussion with you and a panel of experts as we explore this issue.

Our panelists are:

  • Nancy A. Hodgson, Ph.D., RN, FAAN, University of Pennsylvania, an expert on dementia care and end-of-life care for people with dementia; 
  • Helen Kales, M.D., University of Michigan, a geriatric psychiatrist and expert on dementia care and mental health issues; 
  • Yvonne Latty, BFA, MA, a journalist and professor, who is dealing with her mother’s Alzheimer’s;
  • Katie Maslow, MSW, Gerontological Society of America, an expert on improving care for people with dementia and supporting their caregivers; and
  • Mary L. Radnofsky, Ph.D., a former professor who lives independently since being diagnosed twelve years ago with dementia and is an advocate for people with dementia.

February 12, 2018 in Advance Directives/End-of-Life, Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Ethical Issues, Science | Permalink | Comments (0)

Thursday, February 1, 2018

Indiana's Online Guardianship Registry

Indiana is announcing a first in the nation registry of guardianship so financial institutions and others can quickly verify whether an individual is under a guardianship.  An article,  Indiana breaking ground with online guardianship registry explains

The benefits of the registry ( are twofold, DeBoer said. It both helps the courts monitor the cases and grants limited public access to further help protect those in the care of guardians.

The public online registry provides the names of the protected person and their appointed guardian, the protected person's year of birth, whether the case is active or expired, the date the letters of guardianship were issued, the county issuing the guardianship and the case number, according to the state's guardianship website.

Participation in the registry is voluntary and a bit over half of the counties are doing so.  The registry was several years in the making and now, according to the article

The public portion of the registry offers access to less information, but enough to be helpful to banks, hospitals, police and others, said Kathryn Dolan, chief public information officer with the Indiana Supreme Court. ...

Public access to the registry is helpful in all sorts of situations, such as police coming across someone wandering the streets who appears to be in need, Schneider said. Police could search a name and see if there is someone appointed to handle the person's needs.

The registry also helps the courts keep track of statistics related to their guardianship cases....

February 1, 2018 in Cognitive Impairment, Consumer Information, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship, Health Care/Long Term Care, State Statutes/Regulations, Statistics | Permalink | Comments (0)

Friday, January 26, 2018

New Mexico Legislature Considers Comprehensive Reform of Guardianship Laws, Following Fraud & Embezzlement Scandals

In a bipartisan effort, two New Mexico state senators have introduced Senate Bill 19 -- some 187 pages in length -- in an effort to completely overhaul the state's laws governing guardianships in New Mexico.  The proposed changes, which largely track the Uniform Law Commission's recommendations for "Guardianship, Conservatorship and Other Protective Arrangements," will make such proceedings open to the public and require more notification of family members about the process.  The reform follows high-profile scandals involving two companies that are alleged to have "embezzled millions of dollars of client funds," while appointed-guardians also sometimes restricted family access to their wards.

Hearings on the bill began on January 25, 2018, during the regular 30-day session of the legislature.  From the Albuquerque Journal's coverage on the reforms:

Under the bill pending at the Roundhouse, legal guardians would not be able to bar visitors – both in person and via letters and emails – unless they could show the visit would pose significant risk to the individual or if authorized to do so by a court order.


[State Senator and Co-Sponsor of SB 19 Jim White] said the legislation does not call for any additional funding to be appropriated, though it could shift some money from the state guardianship commission to the courts for administrative duties. His bill is the only bill filed so far on the issue of guardianships, though others could be introduced in the coming weeks.


Meanwhile, the proposed law would also permit bonds to be required of conservators – a protection already proposed by the New Mexico guardianship commission and recently put into place by district judges in Albuquerque.

For more on the criminal charges filed against executives at Ayudando Gaurdians Inc. and Desert State Life Management, read Who Guards the Guardians? by Colleen Heild. 

January 26, 2018 in Cognitive Impairment, Consumer Information, Crimes, Current Affairs, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship, Estates and Trusts, Ethical Issues, Property Management, State Cases, State Statutes/Regulations | Permalink | Comments (0)

Thursday, January 25, 2018

What Does An Alzheimer's Patient Look Like? She Looks LIke All of Us

Kaiser Health News ran a very interesting story, Postcard From California: Alzheimer’s ‘Looks Like Me, It Looks Like You’. The article opens with the story of an attorney who has early onset Alzheimer's who recounts her experiences as part of a panel discussion.  "Sponsored by Northern California and Northern Nevada Chapter of the Alzheimer’s Association, the event was part of an initiative to highlight the disease’s impact on women, who account for two-thirds of people living with Alzheimer’s and two-thirds of those caring for them... About 630,000 people have Alzheimer’s disease in California, and women in their 60s have a 1 in 6 chance of developing the disease — almost twice as high as the risk of developing breast cancer."  One of the most compelling quotes in this story came from a panelist who said this "'“Alzheimer’s looks like me, it looks like you, it looks like everyone,'" [she] ...  said." The story closes with advice from one of the panelists about the importance of doing what makes one happy.  Good advice.

January 25, 2018 in Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Health Care/Long Term Care, Programs/CLEs | Permalink | Comments (0)

Netherlands: Examining Physician's Actions in Euthanasia Death of 74-Year Old Woman with Dementia

As my blogging colleague Becky Morgan has highlighted in two of her posts this week, about a February conference at Hastings and recent proposals for "dementia advance directives," end-of-life decisions are increasingly high-profile topics for those working in law, medicine and ethics.  Add to this the case under review in the Netherlands, where a physician described as a "nursing home doctor" performed euthanasia for a 74-year old woman with "severe dementia." A Dutch law legalizing euthanasia, that came into effect in 2002 and that was recently the subject of new "guidelines for performing euthanasia on people with severe dementia," is also under review.  From Dutch News in September 2017:

The case centres on a 74-year-old woman, who was diagnosed with dementia five years ago. At the time she completed a living will, saying she did not want to go into a home and that she wished to die when she considered the time was right. After her condition deteriorated, she was placed in a nursing home where she became fearful and angry and took to wandering through the corridors at night.The nursing home doctor reviewed her case and decided that the woman was suffering unbearably, which would justify her wish to die.


The doctor put a drug designed to make her sleep into her coffee which is against the rules. She also pressed ahead with inserting a drip into the woman’s arm despite her protests and asked her family to hold her down, according to the official report on the death. This too contravenes the guidelines. Once the public prosecution department has finished its investigation it will decide whether or not the doctor, a specialist in geriatric medicine, should face criminal charges.

In reading articles about this matter, I'm struck by how often the articles (and my own post here) draw attention to the woman's age, comparatively "young" at 74, as well as the fact that her euthanasia directive written five years earlier also expressed her wish not to leave her home.  If an individual is younger -- with dementia -- does that reduce society's willingness to "allow" aid in dying? If individuals are older -- and what age is old enough -- is it less controversial? And is a family bound by the individual's wishes not to leave her home?  Tough questions, indeed.

This case has also drawn attention in commentary in the US, including a January 24, 2018  Washington Post piece with the provocative title, How Many Botched Cases Would It Take to End Euthanasia of the Vulnerable?   

January 25, 2018 in Advance Directives/End-of-Life, Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Ethical Issues, International | Permalink | Comments (0)

Monday, January 22, 2018

The Importance of Friendship in Later Life & Caregiving

As I type this, it is 5 in the morning and I'm thinking about my "to do" list for the day.  I've already baked cinnamon rolls, the kind my mom likes best.  My list includes talking to my mother's accountant about a problem with W-2 tax forms for 2 of the 4 caregivers who help mom in her home. It includes setting an appointment wih the latest addition to the team, a physical therapist.  I also need to get the forms from my mom's long-term care insurance company, to start the paperwork for an assessment.  And, that leads into another item on my list, stopping at two residential living communities to drop off  "deposits" to hold spots, while my sister and I work towards the possibility -- no, the probability -- of that difficult decision.

As I think about these small tasks, all of which I need to complete before I head to the airport for another red-eye flight between Arizona and Pennsylvania, I'm also thinking about how important friendships are in later life.  Not just my mother's friends, but my own.  Over the weekend, I spent lots of time talking with a long-time friend. We grew up together and used to ride horses.  As I type this blog post, I can see a funny, faded, framed photo on the wall of my childhood bedroom showing the two of us, plus two more friends, competing as a team in a "4s" class, a riding event that probably no longer even exists. We look so serious as we tried to keep our three chestnut horses plus one palomino in step (and from kicking each other). Riding 4s (2)  
Our elder care interests and careers now overlap as she operates a small personal care home, licensed to provide assisted living. We sometimes joke that we started learning about caregiving in 4-H, although back then our charges  were more likely to be critters. How I wish my friend's care center was an option for my mother, but unfortunately it is too far from my sister's home and job to be practical.

Instead, we talked strategies and other options. She had great advice about switching my mother over to electronic cigarettes, to make a transition to a "no smoking home" a bit easier.  Her mother, who's close to my mother's age, is also struggling with staying in her own home.  Ironic, isn't it, that my friend runs one of the best care homes in the city, but her mother won't even visit?  Sort of like the elder law professor whose parents resisted making plans?

But, as my friend said this weekend, caregiving decisions somehow "seem" different when you are talking about your own parent. The same is true for elder law advice. Even as she and I were giving each other "great" advice, we knew it was hard to follow that advice for our own mothers as they resist major changes.   

It was great to have her to talk with this weekend. My friend understood.  

That wasn't the only important friendship over the weekend.  One of my sister's long time friends interrupted a grocery shopping expedition and joined us on a car ride with our mother.  Her lively, funny conversation kept the tone light and upbeat, even as we did our first drive-by with mom, to look at the outside -- just the outside -- of one care center option that is nearby.  That friend, too, is caring for her mother and sometimes it is our turn to join them to create an "evening out "  

Another friend this weekend is the gal who I came to know so well as the director of the wonderful place where my father lived for many months.  She interrupted her "off duty" weekend to talk to me as a friend about choices.

A cherished neighbor and friend of my mother's also texted me early today, to ask about mom's weekend, even as she is juggling duties to help her husband in a rehab facility, where he is recovering from a broken hip.

I heard from a friend in Florida who lives in a terrific CCRC and she always offers a great ear and sage advice (along with lots of good leads for this Blog).

Another friend actually offered to fly out to Arizona to help -- and she lives in the Virgin Islands.  She, too, is helping an aging parent in the states.

I know that when I return to my classrooms in Pennsylvania later this week, individual students will ask, "how did it go?" And they will undoubtedly surprise me with their patience with our interrupted syllabus and make-up classes.  

Friends who understand.  

I could keep typing for a long time to describe our many friends and the important roles we play in each other's lives.  I know -- and hope -- that many of our readers are supported in their caregiving journeys by such wonderful "late-in-life" friendships. Thank you all,


January 22, 2018 in Cognitive Impairment, Current Affairs, Dementia/Alzheimer’s, Health Care/Long Term Care, Housing | Permalink | Comments (1)

Increasing Awareness and Understanding of Frontotemporal Dementia

A good friend and Penn State colleague, Dr. Claire Flaherty, a neuropsychologist at Penn State Hershey Medical Center, was part of a recent program explaining frontotemporal dementia, a condition which is often subtle, but nonetheless potentially devastating, especially when misdiagnosed.  Here's the link to the podcast of the program, from a local television station in Pennsylvania. 



January 22, 2018 in Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Ethical Issues, Science | Permalink | Comments (0)

Sunday, January 21, 2018

Dementia Advance Directive?

I read a recent article in the New York Times as part of the New Old Age Series. Paula Span writes  One Day Your Mind May Fade. At Least You’ll Have a Plan. The article is about advance directives for those with dementia as discussed in a recent article published in the Journal of the American Medical Association (JAMA).  The idea of the dementia-specific advance directive is to express your wishes based on the specific "phase" of dementia you may enter in the future.  The website for this directive is here from which the 5-page directive may be downloaded.  The NY Times article describes the directive "In simple language, it maps out the effects of mild, moderate and severe dementia, and asks patients to specify which medical interventions they would want — and not want — at each phase of the illness."

In the JAMA article, the authors make the case that other existing advance directives aren't particularly helpful for those with dementia because of the way it progresses over time with corresponding diminishing cognitive function (a subscription is required to access the article).  The NY Times article notes that "[a]lthough [dementia] is a terminal disease, dementia often intensifies slowly, over many years. The point at which dementia patients can no longer direct their own care isn’t predictable or obvious. ... Moreover, patients’ goals and preferences might well change over time. In the early stage, life may remain enjoyable and rewarding despite memory problems or difficulties with daily tasks."

The dementia-specific directive describes the person's wishes  as "goals of care" and offers four options for each stage of dementia, directing the person to "[s]elect one of the 4 main goals of care listed below to express your wishes. Choose the goal of care that describes what you would want at this stage."  The directive divides dementia into three stages, mild, moderate and severe.

There are already a number of types of advance directives, with recent pushes for POLST and other initiatives such as the Conversation Project.   Then there is the Five Wishes document,  which as been around for a number of years. Attorneys may be incorporating dementia-specific instructions into advance directives already.



January 21, 2018 in Advance Directives/End-of-Life, Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Health Care/Long Term Care, State Cases, State Statutes/Regulations | Permalink | Comments (0)

Friday, January 19, 2018

UPitt Law Prof Larry Frolik Urges Change in Pennsylvania Guardianship Law to Clarify Lawyer's Role in Representing Alleged Incapacitated Persons

Larry Frolik, University of Pittsburgh Law Professor and all-round elder law guru, responds to a 2016 decision by the Pennsylvania Superior Court for In re Sabatino with a strong call for change in existing guardianship laws.  In the abstract for his January 2018 article for the Pennsylvania Bar Association Quarterly on The Role of Counsel for an Alleged Incapacitated Person in Pennsylvania Guardianship Proceedings [currently membership-restricted], he writes:  

When a petition is filed requesting that court find an individual to be incapacitated and appoint a guardian for the individual, the alleged incapacitated person [AIP] has a right to counsel. If the individual does not have counsel, the court may, but is not required to,  appoint counsel. Whether counsel is hired by the [AIP] or appointed by the court, the question arises as to what is the proper role of counsel.  Should counsel act solely as a zealous advocate and attempt to resist the imposition of the guardianship if so directed by the [AIP] or should counsel act in the best interest of the person with counsel making the determination of what is in the person's best interest?


A 2016 Superior Court case considered that issue and concluded that if the [AIP] desired not to have a guardian, counsel should so inform the court, but counsel, acting in what counsel believed was the person's best interest, could also tell the court that counsel believed that the person needed a guardian.  That holding is not consistent with the fundamental obligation of counsel to advocate for what the client, the [AIP], desires.  Counsel should not be making an independent determination that the person would be better served if a guardian were to be appointed.  The decisions as to whether an [AIP] is legally incapacitated and, if so, whether the appointment of a guardian is appropriate, are decisions that only a court should make.  


The Pennsylvania Legislature should amend the law of guardianship to clarify that the role of counsel for an [AIP] is that of a zealous advocate, and that counsel should not act in what counsel believes are the person's best interest.  If the Legislature does not act, in the future courts should reexamine the issue and rule that counsel should act solely as a zealous advocate and not attempt to promote the person's best interest. 

January 19, 2018 in Cognitive Impairment, Current Affairs, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship, Ethical Issues, Legal Practice/Practice Management, State Cases, State Statutes/Regulations | Permalink | Comments (0)

Wednesday, January 17, 2018

What Does it Mean to Have a "Perfect Score" on a Cognitive Assessment Test?

I've sat in on dozens of mental acuity screening exams for individuals exhibiting indications of some form of dementia.  

Regarding the "perfect score" reportedly received by President Donald Trump on a mental acuity screening test during his January health exam, it may be helpful to consider what is -- and isn't -- covered by such assessments.  One view is provided in an opinion piece this week in the Washington Post, using history from a criminal case where Brooke Astor's son and an attorney were found guilty of exploiting her alleged mental incapacity.    From the article: 

On its surface, the Montreal Cognitive Assessment (MoCA) test seems pretty easy. Can you draw a three-dimensional cube? Can you identify these various animals? Can you draw a clock? Can you repeat back the phrase, “The cat always hid under the couch when dogs were in the room”? . . . 


If you look at the test, it’s pretty hard to see how you could not score a 30. You see a picture of a lion and have to identify it as a lion? That old joke about how the elderly and toddlers are subject to the same indignities seems pertinent here: Is this really the bar that needs to be met to demonstrate full mental capabilities?


Well, according to those who study dementia and other mental deterioration, yes.


In 2009, I spent six months serving on a jury in the state of New York that was asked to judge the guilt or innocence of a man named Anthony Marshall. Marshall was the son of Brooke Astor, a New York socialite and heiress to the much-diminished Astor fortune. If you’ve ever traveled to New York, you’ve encountered the name: Astor Place, the Waldorf-Astoria or the Astoria neighborhood in Queens. Marshall was accused of having taken advantage of Astor’s diminished mental state to change her will without her being aware of the changes made. Ultimately, the 12 members of the jury found Marshall guilty of several charges.


Over the course of that trial, we were presented with a great deal of information about how doctors assess the mental capabilities of a patient. This was critical to the prosecution; were they not able to prove that Astor’s mental state was diminished, it undercut their argument that Marshall had acted without his mother’s consent. As such, expert witnesses testified about their personal examinations of Astor and others spoke to the reliability of the tests.


Central to that case was one of the components of the MoCA test: drawing a clock. Astor was asked repeatedly to draw analog clocks as a test of her mental acuity. On more than one occasion, she was unable to do so properly. . . . 


The point is not that the test is easy. The point is that an inability to complete aspects of the test reveals different types of mental decline. The clock test is about executive brain function: memory, planning ahead. The different parts of the MoCA are labeled according to what they test, with the clock test falling under “visuospatial/executive.” Questions about the current year and date are under “orientation.” The request to identify a drawing of a camel is under “naming.” In the test’s scoring instructions, it explains what is covered: “attention and concentration, executive functions, memory, language, visuoconstructional skills, conceptual thinking, calculations and orientation.”


It is, as Trump’s doctor noted, a tool for identifying early signs of mental deterioration, like the mental version of a blood sample on which your doctor runs a battery of tests. It’s not the SAT; it’s a screening device.

For more, read Why You May Be Misunderstanding the Mental Test that Trump Passed with Flying Colors, by Philip Bump.

January 17, 2018 in Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Discrimination, Elder Abuse/Guardianship/Conservatorship, Ethical Issues, Science | Permalink | Comments (0)

Tuesday, January 16, 2018

Choice and Customer Service in Senior Living

My sister and I have been interviewing locations for several weeks as possible residential settings for our mother, especially as she is no longer able to handle the stairs in her two-story home, but feels trapped by not being able to choose on her own where to walk.  We know that the best way to approach this task is in small doses, and to do it before there is an emergency that limits choices.  This is actually our second go-round, as we also did this with Mom when we were looking at a place for Dad almost 5  years ago.  But we have been very struck by the changes in the marketplace in just that short period of time:

  1. There are many new options, both large and small, that have come into being in just the last five or fewer years.  We have looked at "classic" versions of continuing care communities, as well as what I would call "ala carte" pricing options for communities that offer a wide range of care alternatives, but each for a separate, escalating price and with no assurances of a placement. We've looked at both modest settings and high end "assisted living centers" that are so new the paint has not quite dried. But most of all, what we have found ourselves focusing on are smaller group homes, licensed under that state's law for "assisted living," and under that law the care includes almost all necessary care, other than certain so-called skilled services (such as catheters, feeding tubes, or I.V. hydration).  We liked the small group setting because they often were in a neighborhood that would make our mother feel at home, while still offering a purposeful renovation that included carefully designed toilets, showers and flooring for easier movement.  The price range is stunningly broad between these options, too.
  2. Doctors are not always the best advisors on choices.  We have found that even though our mother has a wonderful primary care doctor, and even though that doctor makes it known that most of his patients are older, he did not seem to be aware that there are group home options.  He kept telling us we'd need a "skilled care nursing home."  But, as Mom has a pretty detailed end-of-live directive that rejects feeding tubes, and similar skilled care interventions, it seems clear to us that we can look at a well-run facility licensed for assisted living that will be able to provide appropriate care through her last days.  
  3. A lot of the smaller places are accessed through what I would call "brokers."  When you do internet research, the odds are that your first contacts will be with some kind of "finder."  Most of these are paid by the facilities, rather than the families conducting the searches.  As such, there is the clear potential for them to steer families to "their" facility clients.  I know from insiders in the industry that the fees are often the equivalent of one month's fee at the chosen location.  While not necessarily a negative, as a good broker is only successful if he or she really knows the available inventory of residential options, the fees are something that can dramatically impact smaller group homes that are operating on a narrower margin.

Additional trends we noticed? We discovered that a small group home that appears to be a  "family" operation,  may actually be part of a chain of homes with a single corporate owner.  On the other hand, at several of the places we visited, we learned the owner had recently purchased another house in the same neighborhood, and was in the process of a second renovation.  Also, as for staffing, we noticed that in certain parts of the city, all of the caregivers were immigrants from the same country, whether Poland or Pakistan or elsewhere.  Another reminder that realistic immigration policies are a key component to senior living. 

Finally, probably our strongest reaction was to differences in what can only be called old fashioned "customer service."  One "famous," established  CCRC completely lost our interest when the person at the front desk never made direct eye contact with us, instead keeping one hand on a cell phone and the other hand on a very dirty "wet wipe" she said she was using to clean surfaces because it was "flu season." It didn't help that we went through three different people to find one who could give us a tour during a scheduled visit (the first two were so new they didn't have knowledge of the full campus.) At the smaller group homes, we definitely noticed when the persons we met with greeted current residents by name as they gave us a tour.  Also, did they know the names of their own staff members  -- and did they introduce us to each other?  When a trip hazard was lying in wait on the floor, did they pick it up -- or merely avoid it?  

In addition to asking about staffing ratios and open visiting hours, we wanted to know about how long each of the staff members we met had worked at the particular place.   Finally, our whole family likes dogs and therefore it was a plus when we found a place that had a "house dog" that the residents clearly loved, but we recognize that not every place can handle the extra work it takes to maintain a pet on site.  

A sad irony is that it is unlikely our mother will live in the same care setting that was so perfect for our father.  That place is an assisted living center with four cottages, purpose built for Alzheimer's care, on a five acre setting.  But it has become clear to us that even though Mom was the one who chose it for Dad, and it is a wonderful place, with people we still love, our mother probably doesn't want it for herself.  In the last few months of our father's residence there before his death, she visited less and less often, and we came to realize she had "already" rejected it for herself.  It wasn't about memories of Dad; rather, it was about what it meant to "also" have the same cognitive impairment.  The director, who has become a good friend of mine, said that is not unusual -- that even successful residential settings are rarely chosen by families for second or third placements because the next loved one can be hypersensitive to the reality of that choice.  Senior care living -- a tough business in which to generate repeat business. 

January 16, 2018 in Advance Directives/End-of-Life, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Ethical Issues, Health Care/Long Term Care, Housing, State Statutes/Regulations | Permalink | Comments (1)

Monday, January 8, 2018

The Challenge of Finding Safe & Effective Pain-Killers for Older Adults

Over the holidays, unfortunately I had the experience of learning more about how older consumers struggle to understand what safe and effective treatments are available.  In this instance, my mother, in her 90s, was experiencing overwhelming back pain.   She has a long-history of osteoporosis (and it runs in the family on the female side, so my sister and I pay particular attention to this issue!) and in the last few weeks without any known "accident," she had begun to find it almost impossible to walk without pain.  She's not the complaining type, and, having been raised by parents who were Christian Scientists, she tends to follow a "mind over matter" approach to this kind of problem.  But, by Sunday last week, it was no longer possible to pretend she wasn't deeply uncomfortable.

We began another health care odyssey.  Some of the steps we had already learned from past "holiday" experiences with my parents, including calling the "non-emergency" 911 number to get an experienced EMT evaluation of her status in the home, and, if necessary, a transport from her home to the emergency room.  Then, recognizing that New Year's Eve is probably not the best night (if such a thing even exists) to spend in the local hospital's ER, we decided to go early in the morning.  

Five hours after our arrival in the ER, we left with a new "LSO" back brace, instructions on how to use it, and prescriptions for a different walker and a new pain medication.  On the latter point, we informed the ER physician of the fact Mom had not done well on narcotic pain relievers in the past ("why are those ants crawling on the walls") but we were told the drug prescribed was like a very strong Ibuprofen, but in a formulation that would not interact with the blood thinner she was on or her pacemaker.

We duly stopped at the pharmacy on the way home, and I signed my life away in order to pick up her prescription as she was unable to walk in to get it herself.  When we got home,  there were two documents in the bag with the prescription, including what I would call a typical "product insert" that looks like a page from the Physician's Desk Reference and a second sheet entitled "Directions for Use."  The top of the instructions warned, "This is a narcotic drug and not recommended for the relief of pain in...."  And then the list of disqualifying conditions included at least 3 of my mother's age-related conditions.  Yikes!  

My sister and I are  not usually intimidated by product inserts, but here the instructions seemed directly at odds with our concerns about narcotics for mom.  Everything we found on the internet only made us more confused and worried.  

By this time it was late on New Year's Eve, her pain was increasing, and we knew we couldn't persuade her to go back to the ER and her primary care physician wasn't on call.  The bottle said "every 6 hours."  The ER physician had orally told us "every 6 to 8 hours," and finally we knew we had no choice -- her pain was real and we started using it at 12 hour intervals, gradually moving down to 8 hour intervals before she seemed to have real relief.  It was another 5 days before her very kind primary care physician could squeeze us in for an appointment to have a more complete conversation -- and the good news is that we are now more comfortable about a longer range plan.

So on the heels of that multi-day experience, I was very interested in an article I spotted for my airplane trip home to Pennsylvania from Arizona. Phoenix Magazine had a detailed feature story in their January 2018 issue on "Pharma Chameleon," reporting on the arrest for fraud and racketeering charges of INSYS  Therapeutics founder, a "billionaire executive" in Phoenix, well-known for his work on painkiller medicines.  The history of this executive has nothing to do with my mother's pain relief medicine, but it was definitely a reminder that the pharmaceutical industry is deeply involved in pursuit of the "next" generation of painkillers.  And, of course, this article contrasts with the recent news that a different drug company is dropping R & D for a dementia drug.  Pain-killers are still "in," and dementia drugs apparently are "out."  

So, I recommend the Phoenix Magazine article!  I was particularly struck by this paragraph:    

In November, Kapoor [the Phoenix-based INSYS executive arrested by the feds] pleaded not guilty to all charges and is currently awaiting trial, along with the six other former executives, who pleaded not guilty last January. All have severed ties with INSYS, which continues to do business. In July, it received FDA approval for a new drug, Syndros, a synthetic form of THC, the psychoactive component found in cannabis, to treat chemotherapy-induced nausea and loss of appetite in AIDS patients. As it did with Subsys, the company is looking into ways to manufacture the drug as a sublingual spray. Under Kapoor, the company donated $500,000 to the effort to defeat the measure to legalize marijuana for recreational use on Arizona’s 2016 general election ballot, paving the way for the synthetic substitute.

January 8, 2018 in Consumer Information, Crimes, Current Affairs, Dementia/Alzheimer’s, Ethical Issues, Federal Statutes/Regulations, Health Care/Long Term Care, Science, State Cases, State Statutes/Regulations | Permalink | Comments (1)

Sunday, January 7, 2018

Pfizer Inc. Announces It Will End Research on Alzheimer's & Parkinson Drugs

According to the Wall Street Journal, Pfizer Inc released a public statement on Saturday, January 6, 2018, announcing the end of R & D for new drugs for treatment of Alzheimer's Disease and Parkinson's Disease.  The announcement reflected cost of efforts and the lack of success, and apparently the decision will mean layoffs for some 300 employees "over several months."

The Wall Street Journal also provided context for the disheartening decision:  

Like several peers, Pfizer has invested heavily in developing treatments for Alzheimer’s and Parkinson’s because of the huge need. About 5.5 million Americans have Alzheimer’s, and the numbers are expected to rise as the population ages. Analysts say successful treatments for the memory-robbing disease could have multibillion-dollar sales potential.


But promising compound have repeatedly failed to work during testing.


Notably, in 2012, Pfizer and partner Johnson & Johnsonhalted development of an Alzheimer’s drug called bapineuzumab after it failed to slow memory loss in test subjects.


The most recent disappointment took place last year, when a closely watched study of a treatment from Axovant Sciences Inc. called intepirdine failed to improve memory and learning in Alzheimer’s patients.

Companies that are still looking at possible Alzheimer's treatments include AstraZeneca, Biogen Inc, and Eli Lilly & Co., according to the WSJ article.  

January 7, 2018 in Consumer Information, Current Affairs, Dementia/Alzheimer’s, Health Care/Long Term Care, Science | Permalink | Comments (1)