Tuesday, April 3, 2018

More on Dementia Advance Directives

Recently we wrote about a dementia advance directive and now, Kaiser Health News has a story about an ‘Aggressive’ New Advance Directive Would Let Dementia Patients Refuse Food. where "a New York end-of-life agency has approved a new document that lets people stipulate in advance that they don’t want food or water if they develop severe dementia. ...The directive, finalized [in March] by the board for End Of Life Choices New York, aims to provide patients a way to hasten death in late-stage dementia, if they choose.."  The article explains that although dementia is a terminal condition, the medicaid aid-in-dying laws don't apply to someone with it. So instead, "[t]he document offers two options: one that requests “comfort feeding” — providing oral food and water if a patient appears to enjoy or allows it during the final stages of the disease — and one that would halt all assisted eating and drinking, even if a patient seems willing to accept it."

There was a significant amount of press coverage about whether an advance directive covers hand feeding as a result of a case out west where a patient with an advance directive was hand fed over her husband's objections.  Typically the directives are silent about the provision of food and fluids by hand. Here, "[t]he New York directive, in contrast, offers option A, which allows refusal of all oral assisted feeding. Option B permits comfort-focused feeding.... [with] both options ... invoked only when a patient is diagnosed with moderate or severe dementia, defined as Stages 6 or 7 of a widely used test known as the Functional Assessment Staging Tool (FAST). At those stages, patients would be unable to feed themselves or make health care decisions."  This document is different than the one  we reported on in our earlier blog post. As the article explains, "[t]he new form goes further than a similar dementia directive introduced last year by another group that supports aid-in-dying, End of Life Washington. That document says that a person with dementia who accepts food or drink should receive oral nourishment until he or she is unwilling or unable to do so... [while the]  New York document says, 'My instructions are that I do NOT want to be fed by hand even if I appear to cooperate in being fed by opening my mouth.'"

Experts interviewed for the article expressed concerns about whether such instructions would be honored.

Stay tuned.

 

April 3, 2018 in Advance Directives/End-of-Life, Cognitive Impairment, Consumer Information, Dementia/Alzheimer’s, Health Care/Long Term Care, State Cases, State Statutes/Regulations | Permalink | Comments (1)

Thursday, March 29, 2018

Penn State's Dickinson Law Hosts Pennsylvania Judges for Program on "Dementia Diagnosis and the Law"

Dickinson Law's CJE Program on Dementia Diagnosis and the LawOn Thursday, March 29, 2018 Penn State's Dickinson Law hosted a continuing judicial education program for the Pennsylvania Judiciary, with live attendance in Carlisle by more than 30 judges and with even more judges around the state participating via a live stream.  The program was "Dementia Diagnosis and the Law," organized into three parts:

Part 1:  Medical Science and Dementia

Panel Discussion and Audience Q & A

Part 2:  Legal Implications of a Diagnosis of Dementia

  • Keynote Presentation:  Clinical, Legal and Judicial Judgments of Capacity in Persons with Dementia
  • Why “Guardianship Oversight” is a Hot National (and State) Topic
    • Professor Katherine C. Pearson, Dickinson Law, Pennsylvania State University

Panel Discussion and Audience Q & A

Part 3:  Adjudication Exercises, facilitated by Professor Tiffany Jeffers, Dickinson Law, with Dickinson Law students in role plays on issues about capacity to contract, limited guardians, the roles of guardians ad litem and the potential for attorneys or judges to become affected by a neurocognitive disorder.

  • Panel Discussion and Audience Q & A

Panel Members included:

As the law school's organizer for the event, I know I learned a lot from this dynamic group of seasoned experts who spoke on the challenging legal, medical, and judicial issues that can arise from cognitive impairments associated with aging. The judges in our audiences were fully engaged, offering great comments, questions and experiences.

My special thanks to each and every one of the speakers, facilitators, judges, lawyers and students who made the program so informative.  It was fun to work with the Administrative Office of the Pennsylvania Courts on this project and we look forward to additional opportunities to collaborate in the future.  Once I catch up a little on my day job (and maybe on some missed sleep), I'll post again with some additional reactions and thoughts from this program.  

March 29, 2018 in Cognitive Impairment, Crimes, Current Affairs, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship, Estates and Trusts, Health Care/Long Term Care, Housing, Legal Practice/Practice Management, Property Management, Science | Permalink | Comments (1)

New Mexico, Where New Guardianship Laws Will Take Effect July 1, 2018, Struggles With Reporting Systems

Earlier this week, The Albuquerque Journal reported on continued problems with accountability for court-appointed guardians within New Mexico. Colleen Heild writes:

What’s become of Elizabeth Hamel? Hamel is among dozens of people placed under a legal guardianship or conservator in southern New Mexico over the past 20 years whose welfare is unknown – at least according to state district court records. . . . Nothing in the online court docket sheet indicates that Hamel’s case has been closed. But since being appointed, Advocate Services of Las Cruces hasn’t filed any annual reports about Hamel’s well-being or finances, the docket sheet shows.

 

There’s no indication as to whether she is dead or alive, or if the  guardianship/conservatorship has been revoked. . . . 

 

As New Mexico prepares for a new law, effective July 1, to help its ailing guardianship system, the state’s district courts still don’t have a uniform way to ensure guardian compliance with reporting laws that have been on the books at least since 1989.

 

State Sen. Jerry Ortiz y Pino, D-Albuquerque, said last week that he was disappointed that annual reports haven’t been filed in some cases.

 

“And I’m not surprised the courts wouldn’t know,” said Ortiz y Pino, a longtime advocate for reform. “That’s what we ran into over and over again, the lack of any kind of system to make it possible to log them (annual reports) in, let alone read them, let alone send somebody out to verify whether or not what they’re reporting is the truth. Those are the kind of things we shouldn’t be missing. Somebody should be at least saying, ‘Hey, you never did file a report.’ ”

For more, read Missing Reports Plague Guardianship System (3/25/18). 

March 29, 2018 in Cognitive Impairment, Crimes, Current Affairs, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship, Estates and Trusts, Ethical Issues, Property Management, State Cases, State Statutes/Regulations | Permalink | Comments (1)

Monday, March 26, 2018

Maryland Courts Tackle the Challenge on Guardianship Reform

Maryland is among the several states putting serious energy into modernizing and reforming rules governing guardianships, with major new rules that took effect on January 1, 2018.  In Bifocal, the journal of the ABA Commission on Law and Aging, the Honorable Karen Murphy Jensen, who chaired a multidisciplinary workgroup tackling the state reforms, describes the process during an interview.  She notes the work ahead for many: 

Judge Jensen: These are big changes and courts, attorneys, and guardians need time to navigate them. Maryland’s circuit courts are not uniform and the changes will affect each court differently. Guardianship attorneys need to familiarize themselves with the new requirements and procedural changes. The orientation and training requirements add a step to the process that may overwhelm some prospective guardians and each individual court will have to respond to that reality. 

 

Along the way, the Workgroup consulted with and got feedback from judges, court staff, private attorneys, public agencies, and other service providers outside of the Workgroup. It was clear that the Workgroup would need to provide ongoing technical assistance and develop resources to help everyone navigate these changes once in effect. While sensitive to the impact on family guardians, we believe it is important for guardians to understand what is expected of them and know what tools are available upfront, and for courts to screen out those unable to take on the responsibility.

For more, read: Maryland Judicial Workgroup Spearheads Guardianship Reforms, Vol. 39, Issue 3, Bifocal. 

March 26, 2018 in Cognitive Impairment, 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, March 22, 2018

The Perils of Serving as a Financial Caregiver

At the invitation of the editor for the ABA Commission on Law and Aging's journal, Bifocal, I wrote a recent article on The Perils of Serving as a Financial Caregiver. I described a fundamental challenge:

What are the family dynamics? Will appointment of one individual create a trap whereby an overlooked or disgruntled offspring, sibling or spouse demands an accounting?  Even successful defense against a weak claim will involve costs to the financial caregivers and to the principal's estate.  Family dynamics can also change over time, especially as feelings of resentment, guilt or denial begin to color relationships. Consider whether greater transparency within the family at all phases of the relationship involving handling of financial matters will deter later problems.

Using an article in the The New York Times today, my words of caution appear mildly framed, compared to the reality of what appears to be one family's deeply embedded dynamic following the death of the parents, pitting two sons against a daughter and her husband over the family fortune in Arkansas.  

“I want this finished, over and done,” Sanders McKee [one son] said in his deposition. “I am tired of wasting my life. She needs to stop wasting her own. And I’m tired of this. I’m absolutely exhausted with it.”

 

But that was in August 2014, and the legal battle continues, costing all sides money and time. The Noels [daughter and son-in-law] estimated that they have spent $1 million on legal fees in the case, and they’re not resting. 

 

Aside from the cost, the case also demonstrates the strain being a trustee can put on family members.

For the full cautionary tale, read Are Millions Missing? Some Relatives Want to Know.  Others Don't, by Paul Sullivan.

Hat tip to my Dickinson Law colleague, Professor Laurel Terry, for the pointer to this interesting New York Times  piece.

March 22, 2018 in Current Affairs, Dementia/Alzheimer’s, Estates and Trusts, Ethical Issues, Legal Practice/Practice Management, Property Management, State Cases | Permalink | Comments (0)

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 Caring.com 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 (public.courts.in.gov/GRP/) 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.

Interesting.

 

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)