Tuesday, March 24, 2015

Are Doctors Failing to Tell Patients of Diagnosis of Alzheimer's? And Why Not?

The Alzheimer's Association's 2015 Facts & Figures Report that many doctors fail to tell patients (or their family members) about a diagnosis of Alzheimer's is getting a lot of attention, including this Morning Edition story

Why aren't doctors revealing their diagnoses?  During my work in Northern Ireland on access to justice for older adults, we realized that the doctor's diagnosis is a key opportunity for families to receive early advice about "non-medical" planning, such as arranging for powers of attorney or other arrangements for financial management, while the patient has adequate cognition to help with decision-making.  If communication of the diagnosis is delayed, the window for effective participation in planning may also be lost.

March 24, 2015 in Cognitive Impairment, Consumer Information, Dementia/Alzheimer’s, Ethical Issues, Health Care/Long Term Care | Permalink | Comments (0) | TrackBack (0)

Monday, March 23, 2015

On Being - With Alzhemier's

On Being, a program broadcast on NPR and via podcast, has an new episode on "Alzheimer's and the Spiritual Terrain of Memory" with many touching moments.  The summary is as follows:

"Alzheimer's disease has been described as 'the great unlearning.' But what does it reveal about the nature of human identity? What remains when memory unravels? Alan Dienstag is a psychologist who has led support groups with early Alzheimer's patients, as well as a writing group he co-designed with the novelist Don DeLillo. He's experienced the early stages of Alzheimer's as a time for giving memories away rather than losing them."

The website offers poems and essays from the writing group.

March 23, 2015 in Books, Cognitive Impairment, Current Affairs, Dementia/Alzheimer’s | Permalink | Comments (0) | TrackBack (0)

Wednesday, March 18, 2015

Asking Questions re What It Means to Have "The Talk" about Long-Term Care Planning

There is an interesting new YouTube video available, with charismatic, high-profile actors encouraging all of us to initiate "The Talk" about how we -- or our loved ones -- want to handle the possibility, indeed probability, that someday we will need long-term care.  Rob Lowe, Maria Shriver, Maggie Gyllenhaal, Angela Bassett, Zachary Quinto and Jim Nantz admit the difficulties of talking about growing old, often using vivid tidbits from their own lives or families to emphasize the importance of breaking past the barriers of denial. 

I like the video. It is simple, direct.  But, at the same time, I find the initial video, while interesting, to be a lacking in specifics about what it means to "talk" about long-term-care planning. The 2-minute video is actually part of a series created by Genworth, the major seller of long-term care insurance, and if you hit the right (wrong?) buttons you are directed to Genworth websites that offer more details, especially about  -- surprise, surprise -- buying long-term care insurance. 

I suspect that many people will panic if they hear "pay some money now" in order to buy LTC insurance, as even a part of the  "solution."  See what you think:

 

March 18, 2015 in Consumer Information, Current Affairs, Dementia/Alzheimer’s, Estates and Trusts, Ethical Issues, Film, Health Care/Long Term Care | Permalink | Comments (0) | TrackBack (0)

Friday, March 6, 2015

Harvard Prof. Robert Sitkoff to Speak on Incapacity Planning at University of Illinois

Harvard Law Professor Robert H. Sitkoff is speaking at University of Illinois School of Law on Monday, March 9.  The topic is "Revocable Trusts & Incapacity Planning: More then Just a Will Substitute." Sitkoff-Publicity-HLS 

Here are details provided by Illinois Law Professor Richard Kaplan

The use of trusts has evolved from means of transferring property to mechanisms for managing assets and more recently, to will substitutes for avoiding probate and simplifying post-death transfers. But lawyers increasingly use revocable trusts in planning for possible client incapacity to avoid the costs and publicity associated with custodianship and guardianship. State-level reforms of trust law to accommodate older uses of these devices are not, however, well-suited to this newer use of trusts, and this lecture will examine those reforms in this context.

 

Professor Sitkoff was the youngest professor to receive a chair in the history of Harvard Law School. He previously taught at New York University School of Law and at Northwestern University School of Law. After graduated from the University of Chicago Law School with High Honors, he clerked for then Chief Judge Richard A. Posner of the United States Court of Appeals for the Seventh Circuit. Professor Sitkoff is an active participant in trust and estates law reform. He is a liaison member of the Joint Editorial Board for Uniform Trusts and Estates Acts within the Uniform Law Commission and has been a member of several drafting committees for acts involving trusts and estates matters. Sitkoff is also a member of the American Law Institute’s Council and has served on the consultative groups for the Restatement (Third) of Trusts and the Restatement (Third) of Property: Wills and Other Donative Transfers.

Word from Dick Kaplan is that Rob's  presentation will be available (eventually) via a recording, and his presentation will also be captured as an article in University of Illinois' Elder Law Journal

My students often ask why all casebooks can't be as engaging to read as the "Dukeminier" text on Wills, Trusts & Estates -- and I suspect one reason is that Rob Sitkoff, although uniquely prolific and gifted, is still only human and cannot write them all! 

Postscript:  I asked Rob to send me something other than his "official" Harvard photo.  The one above seems to capture his spirit and the smile I sometimes detect in his footnotes. 

March 6, 2015 in Books, Cognitive Impairment, Dementia/Alzheimer’s, Estates and Trusts, Health Care/Long Term Care, Programs/CLEs, Property Management | Permalink | Comments (0) | TrackBack (0)

Monday, March 2, 2015

Dementia -- A Triple Whammy for Women

Alzheimer's Research UK is releasing a report this month about the impact of dementia on women. Details released in advance of the formal launch are eye-opening.

As reported in The Guardian, “'Dementia is a life-shattering condition and represents a ‘triple whammy’ for women,' said Hilary Evans, director of external affairs at Alzheimer’s Research UK. 'More women are dying of dementia, more women are having to bear the burden of care, while a disproportionate number of women currently working in dementia research are having to leave science.'”

The full study calls for the government to make a significant increase in its funding of dementia research and an improved investment in care. Further, the report will explain that:

■ More than 500,000 women [in the U.K.] are now affected by dementia. About 350,000 men have the condition.

■ Women over 60 are now twice as likely to get dementia as breast cancer.

■ Women are more than two-and-a-half times more likely than men to be care-givers of people with dementia.

■ Most care- givers do not choose or plan to take on this role and often find the experience highly stressful.

Thanks to friends at CARDI, the Centre for Ageing Research and Development in Ireland for sharing this news.  The formal launch of the Alzheimer's Research UK report appears timed to coincide with their "sold-out" 2015 Conference on March 10-11 in London. 

March 2, 2015 in Cognitive Impairment, Current Affairs, Dementia/Alzheimer’s, International, Science, Statistics | Permalink | Comments (0) | TrackBack (0)

Thursday, February 26, 2015

The French "Bettencourt Affair" - A "Universal Story" on the Cover of the NYT

The New York Times  offers dramatic front page coverage of a criminal trial against ten defendants in France, accused of manipulation of Liliane Bettencourt, the 92 year-old heir of the L'Oreal cosmetics fortune.  The defendants include a "celebrity photographer" (and his "long-time companion"), a former wealth manager, and an 81-year-old notary "who certified, with misgivings, Mrs. Bettencourt's decision to make" the 67-year-old photographer her sole heir, cutting out her only daughter. 

Serious money is involved, with Forbes once estimating Mrs. Bettencourt's fortune at more than $40 billion.  She has been diagnosed with "dementia and moderately severe Alzheimer's."

The prosecutors said her advanced age, the beginnings of dementia and a daily medical regimen of 56 pills, including antidepressants, also invited exploitation. And investigators contend that the schemes were so widespread that they included a political scandal involving a former finance minister seeking cash for the 2007 presidential campaign of Nicolas Sarkozy.

 

Some of the house staff members risked their jobs to challenge her advisers and confidants, particularly a French society photographer who gained the largest share of her fortune. At one point, investigators estimated that share to be about a billion euros, or $1.13 billion, in gifts during 20 years of friendship ending in 2010.

 

“Liliane wanted to do things for me, to ease my life,” testified the photographer, François-Marie Banier, 67, who is facing the highest penalty of the defendants, three years in prison. “I refused things like a mansion. But she took it so poorly. It’s really hard to cross that extraordinary woman.”

For all the details, sadly familiar if you followed the Brooke Astor history of wealth and manipulation, about the trial that just ended before a panel of judges who will issue their verdict on May 28, read "The Case of L'Oreal Heiress, A Private World of Wealth Becomes Public."

February 26, 2015 in Cognitive Impairment, Crimes, Current Affairs, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship, Ethical Issues, International | Permalink | Comments (0) | TrackBack (0)

Another Movie for Our List

The movie, Still Alice, has been released.  Starring Julianne Moore in the role of the lead character, the movie is based on the book by the same name written by Lisa Genova. The book and movie are about a professor who has early onset Alzheimer's. The synopsis from the movie's website describes the movie this way:

Alice Howland, happily married with three grown children, is a renowned linguistics professor who starts to forget words. When she receives a diagnosis of Early-Onset Alzheimer's Disease, Alice and her family find their bonds thoroughly tested. Her struggle to stay connected to who she once was is frightening, heartbreaking, and inspiring.

 

February 26, 2015 in Books, Cognitive Impairment, Dementia/Alzheimer’s, Film | Permalink | Comments (0) | TrackBack (0)

Tuesday, February 24, 2015

ACL Webinar-Mark Your Calendars

The Administration for Community Living (ACL) has announced an upcoming webinar, Intellectual & Development Disabilities & Dementia-Experiences of a Family Advocate & Promising Practices. The webinar is scheduled for February 26, 2015 from 3-4 p.m. est.   Registration is free. The program website offers this description of the webinar:

The February 26th webinar will provide participants with information on personal experiences, advocacy efforts, and helpful practices for people with intellectual and developmental disabilities (ID/D) and dementia. Mary Hogan will speak about her personal experience as guardian for her late brother and an advocate for her brother and others with intellectual and developmental disabilities and dementia. Phil McCallion will speak about promising practices of how to work with people with ID/D and dementia.

To register, click here.

February 24, 2015 in Cognitive Impairment, Dementia/Alzheimer’s | Permalink | Comments (0) | TrackBack (0)

Monday, February 23, 2015

Moments of Lucidity vs. Mental Capacity

On Saturday, I had the privilege of attending the 7th Annual Conference of the Pennsylvania  Association of Elder Law Attorneys (PAELA), to give a presentation with Dr. Claire Flaherty, a Penn State Hershey Medical Center neuropsychologist with special expertise in frontal and temporal lobe impairments, on "Dementia Diagnosis and the Law."  February Snow 2015

Another speaker, Teepa Snow, an occupational therapist with long-experience in behavioral health, brain injury and dementia care, spoke on Sunday. 

It was one of the rare times when I've been glad to be "snowed in" at a conference, as that kept me in place for both days of the presentations, rather than rushing home to work on some other task. 

One of the topics that was discussed by attendees over the two days was the question of whether testimony by witnesses who observe "moments of lucidity" -- standing alone -- is proper support for a finding of "legal capacity." Context is important, of course, as both common law and statutory law increasingly recognize that capacity should be evaluated in terms of specific transactions. 

My own takeaway from the health care experts was the need for some measure of caution in this regard.  With many forms of dementia, especially at the early stages, unrecognized impairment of judgment may precede recognized impairment of memory.  In other words, as I understand it, we may spend too much time being impressed by a client's ability to remember who is the president or the names of their children, and too little time asking more probing questions.  Deeper inquiry may reveal or ameliorate concerns about judgment, including an individual's current abilities to make decisions, make reasonable, rational connections in formulating or following a plan, and related skills such as empathy or self-awareness.

Along this same line, it is a good time to remind readers that there are three useful handbooks on "Assessment of Older Adults With Diminished Capacity," one directed to lawyers, one to psychologists, and one for judges, that were created by experienced professionals working as a team on behalf of the American Bar Association and the American Psychological Association (APA).  Individual copies can be downloaded without cost from the APA website.  

February 23, 2015 in Books, Cognitive Impairment, Dementia/Alzheimer’s, Ethical Issues, Legal Practice/Practice Management, Programs/CLEs, Science | Permalink | Comments (0) | TrackBack (0)

Sunday, February 22, 2015

First White House Conference on Aging Regional Forum Held in Tampa, Florida

The first White House Conference on Aging Regional Forum was held on February 19, 2015 in Tampa Florida. The morning featured comments by the WHCOA Executive Director Nora Super and remarks by Cecilia Munoz, Assistant to the President and Director, Domestic Policy Council.  Two panels followed, with comments by panelists on the 4 topics of emphasis for the 2015 WHCOA, healthy aging, long term services and supports, retirement security and elder justice.  In the afternoon, participants were divided into working groups for those 4 topics, where they discussed priorities, obstacles, and actions.  Representatives from each working group presented the group's topic recommendations in a closing panel presentation moderated by Kathy Greenlee, Administrator for the Administration on Community Living and the Assistant Secretary for Aging. In person attendance was invitation only, but the event was live webcast through HHS. The next regional forum is set for Phoenix, Arizona on March 31st. Visit the WHCOA forums website a day or so before the event to register for the live webcast.

February 22, 2015 in Current Affairs, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship, Health Care/Long Term Care, Medicaid, Programs/CLEs, Retirement, Social Security | Permalink | Comments (0) | TrackBack (0)

Wednesday, February 18, 2015

Questions Raised by Doctor's Guilty Plea for Kickbacks from Prescribing Risky Drugs to Seniors

A long-running investigation of a doctor in Illinois for Medicaid and Medicare fraud is coming to a close.  Michael Reinstein, "who for decades treated patients in Chicago nursing homes and mental health wards," has pleaded guilty to a felony charge for taking kickbacks from a pharmaceutical company.  As detailed by the Chicago Tribune, on February 13, Reinstein admitted prescribing, and thus generating public payment for, various forms of the drug clozapine, widely described as a "risky drug of last resort."

The 71-year old doctor has been the target of the state and federal prosecutors for months, and he's also agreed to pay (which is, of course, different than actually paying) more than $3.7 million in penalties.  He may still be able to reduce his prison time from 4 years to 18 months, if he "continues to assist investigators."

The investigation traces as far back as 2009, as detailed by a Chicago-Tribune/ProPublica series that revealed he had prescribed more of the antipsychotic drug in question to patients in "Medicaid's Illinois program in 2007 than all doctors in the Medicaid programs of Texas, Florida and North Carolina combined."  Further, the Tribune/ProPublica series pointed to autopsy and court records that showed that, "by 2009, at least three patients under Reinstein's care had died of clozapine intoxication." Reinstein's, and one assumes, the pharmaceutical company's, defense was that the drug could have appropriate, therapeutic effects for patients, beyond the limited "on-label" realm.

Assuming that the government ever sees a dime in repayment, from either the doctor or the drug company, my next question is what happens to that money?  At a minimum, shouldn't there be review of the effect of the drugs on these patients, some of whom may have been administered the drug for years? We keep reading that the drugs are "risky," but shouldn't there be evidence of real harm -- or perhaps even benefit -- from the documented "off-label" use?  Certainly, prosecutions for off-label drugs are understandable attempts to claw-back, or at least reduce, public expenditures. But isn't more at stake, including the search for relief or workable solutions for patients who are in distress? 

In March 2014, for example, Teva Pharmaceutical Industries Ltd., the maker of generic clozapine, reportedly agreed to pay more than $27.6 million to settle state and federal allegations that it induced Reinstein to prescribe the drug. Recovering misspent dollars is important.  But I also would like to see evidence of the harm alleged by the government -- or the benefit asserted by the defendants -- from the administration of the drugs.  Isn't objective study of the history of these real patients a very proper use of the penalties? 

February 18, 2015 in Cognitive Impairment, Consumer Information, Crimes, Dementia/Alzheimer’s, Ethical Issues, Federal Cases, Federal Statutes/Regulations, Health Care/Long Term Care, Medicaid, Medicare, State Cases | Permalink | Comments (0) | TrackBack (0)

Wednesday, February 11, 2015

Guide for Law Enforcement on Alzheimer's

The Bureau of Justice Administration (BJA) along with Center for Public Safety and Justice have released a guide for law enforcement on dealing with individuals with Alzheimer's. Alzheimer's Aware: A Guide for Implementing a Law Enforcement Program to Address Alzheimer’s in the Community is designed to help law enforcement create a community program to deal with the potential interaction with a person with Alzheimer's. This booklet identifies a number of scenarios when an officer might interact with a person with Alzheimer's. The tools provided by this initiative is designed

to assist in the development and implementation of a community educational campaign by, or n partnership with law enforcement. The resources have recommendations for developing a strategic plan with practical action steps and activity implementation, in order to develop a holistic  community approach to responding in crisis situations, involving persons with Alzheimer’s disease, as well as increase awareness of Alzheimer’s and other forms of dementia.

The booklet includes recommendations for law enforcement to develop a program on making their officers aware of Alzheimer's and the issues they may encounter. These include officer training, policy reviews, creation of a "local registry", encouraging the use of monitoring technology or wearable devices and collecting statistics.

February 11, 2015 in Cognitive Impairment, Crimes, Dementia/Alzheimer’s | Permalink | Comments (1) | TrackBack (0)

Tuesday, February 10, 2015

Financial Decision-Making in Later Years

The Center for Retirement Research at Boston College has released a report, How Does Aging Affect Financial Decision Making? The introduction explains

 With the shift from defined benefit pensions to 401(k)plans, the welfare of retirees increasingly depends on their ability to make sound financial decisions. This situation has raised concerns that the cognitive decline that comes with age could compromise the elderly’s decision-making ability and thereby their financial well-being. This brief, based on a recent study,1 addresses this issue using a unique dataset that follows a group of elderly individuals over time. 

 The report is divided into four parts: literature review, data, analysis and conclusion. The conclusion paints an interesting picture

The findings confirm that declining cognition, a common occurrence among individuals in their 80s, is associated with a significant decline in financial literacy. The study also finds that large declines in cognition and financial literacy have little effect on an elderly individual’s confidence in their financial knowledge, and essentially no effect on their confidence in managing their finances. Individuals with declining cognition are more likely to get help with their finances. But the study finds that over half of all elderly individuals with significant declines in cognition get no help outside of a spouse. Given the increasing dependence of retirees on 401(k)/IRA savings, cognitive decline will likely have an increas-ingly significant adverse effect on the well-being of the elderly.

February 10, 2015 in Cognitive Impairment, Consumer Information, Dementia/Alzheimer’s, Property Management, Retirement | Permalink | Comments (1) | TrackBack (0)

Monday, February 9, 2015

Free Tool Kits and In-Service Downloads-Limited Time Offer!

I received an email recently from the National Center on Elder Abuse listserv about free training materials. The National Council of Certified Dementia Practitioners/International Council of Certified Dementia Practitioners are offering for free their toolkits and in-service materials through March 15, 2015.  Sign up here for the free training materials. There is a wide array of topics available, including a large library of dementia topics and some on elder abuse. According to the website, the took kits include the following:

  • Free Power Point / Over Head In-services for   Health Care Staff, Tests and Answers, Seminar Evaluation and Seminar   Certificates
  • 97 Ideas To Recognize Alzheimer's Disease and Dementia Care Staff Education Week
  • 20 Reasons Why You Should Provide Comprehensive   Alzheimer's Disease and Dementia Training to Your Staff by A Live Instructor
  • Dementia Word Search Games & Interactive   Exercises
  • Movies and Books About Alzheimer’s You Don’t Want   To Miss
  • Proclamation & Sample Agenda for Opening   Ceremony & Sample Letter to Editor
  • Contest Entry Forms- Staff Education   week
  • Alzheimer’s Disease Bill of Rights & Alzheimer’s   Patient Prayer
  • Nurse Educator / In-service Director of The Year Nomination Form
  • Corporate and Associate Membership Forms
  • Songs to Inspire You
  • Letter to the Editor
  • Sample Certificate
  • Alzheimer's Prayer

February 9, 2015 in Cognitive Impairment, Consumer Information, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship, Programs/CLEs | Permalink | Comments (0) | TrackBack (0)

Monday, February 2, 2015

Supported Decision-Making: A Model Alternative to Guardianship?

A recent blog post on the Administration for Community Living (ACL)  discusses supported decision-making. Preserving the Right to Self-determination: Supported Decision-Making discusses the limitations of guardianships for decision-making by those individuals with dementia, intellectual or developmental disabilities and explains why supported decision-making may be a better choice.

Supported decision-making starts with the assumption that people with intellectual and developmental disabilities and older adults with cognitive impairment should retain choice and control over all the decisions in their lives. It is not a program. Rather, it is a process of working with the person to identify where help is needed and devising an approach for providing that help. Different people need help with different types of decisions. For some, it might be financial or health care decisions. Others may need help with decisions surrounding reproductive rights or voting. Some may need help with many types of decisions, while others need help with only one or two. 

The solutions also are different for each person. Some people need one-on-one support and discussion about the issue at hand. For others, a team approach works best. Some people may benefit from situations being explained pictorially. With Supported decision-making the possibilities are endless.

The blog goes on to explain "a cooperative agreement" with Quality Trust for Individuals with Disabilities where they will 

build a national training, technical assistance, and resource center to explore and develop supported decision-making as an alternative to guardianship. The resource center will gather and disseminate data on the various ways in which supported decision-making is being implemented and generate research in the area. Our goal is that the information collected during the period of this cooperative agreement will lead to a model that will help states as they consider alternatives to guardianship.

February 2, 2015 in Cognitive Impairment, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship | Permalink | Comments (0) | TrackBack (0)

Sunday, February 1, 2015

"Insider" Greg O'Brien Continues His Story on Alzheimer's on NPR

Part 2 of Greg O'Brien's NPR report on his personal journey with Alzheimer's is now available.  He has a remarkable way of capturing the process with words -- a bit of irony:

"A diagnosis of Alzheimer's disease, says Greg O'Brien, doesn't mean your life is instantly over. 'There is this stereotype that ... you're in a nursing home and you're getting ready to die,' he told NPR. 'That's not true.'

 

'It's like a plug in a loose socket,' he says. 'Think of yourself, wherever you are in the country, and you're sitting down and you want to read a good book, and you're in a nice sofa chair next to a lamp at night. And the lamp starts to blink. You push the plug in and it blinks again and you push the plug in. ... Well, pretty soon you can't put the plug back in again because it's so loose, it won't stay there. And the lights go out forever.'"

February 1, 2015 in Cognitive Impairment, Current Affairs, Dementia/Alzheimer’s | Permalink | Comments (0) | TrackBack (0)

Saturday, January 31, 2015

"Still Alice" As Springboard For Family Conversation

My colleague and great friend, Professor Laurel Terry, shared Paul Sullivan's Wealth Matters column from the New York Times, that uses the new movie Still Alice as a reminder of the importance of family conversation:

"For anyone who has ever watched a family member disappear into Alzheimer’s, Ms. Moore’s performance is gripping, particularly as her tricks to stall her decline inevitably fail and the later stages of the disease consume her. Yet the movie is also a great vessel to explore many of the financial issues that families need to address when someone is diagnosed with Alzheimer’s or any other disease that causes cognitive impairment."

The column continues with thoughts from financial professionals, who sometimes observe the early signs of a long-time client's decline:

"Thomas Mingone, managing partner at Capital Management Group of New York, said he had clients whose mental slide had been apparent to the advisers, accountants and lawyers in the room but not to the client. Since advisers are bound by a fiduciary duty to protect their clients’ privacy, Mr. Mingone said he can’t simply call up their children to let them know. With a client who seems to be slipping but lives alone and sees family members infrequently, Mr. Mingone said he suggests a family meeting, which allows him to connect with his client’s children. Other times, he said, just asking clients how they are doing brings the problem out.

 

'Sometimes when you bring this up with clients, it’s a relief to them,' he said."

For additional realities, including the problem of end-of-life decision-making and care choices, read "In Alzheimer's Cases, Financial Ruin and Abuse Are Always Lurking." 

January 31, 2015 in Cognitive Impairment, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship, Estates and Trusts, Film | Permalink | Comments (0) | TrackBack (0)

Sunday, January 25, 2015

How Do You Tell Family You Have Alzheimer's?

NPR's All Things Considered began a series on January 24th that follows Greg O'Brien's journey with early-onset Alzheimer's, beginning with his diagnosis at age 59.  There is lots of important stuff here, including the need for family dialogue and understanding.  One dialogue is between the father and son, about why it was important for the son to serve as his  dad's agent under a Power of Attorney. 

Here's an excerpt from O'Brien's powerful account:

"How do you tell your kids that you got Alzheimer's? It sucks.

 

I had planned this family meeting, so all the kids were home and we're going to go out to dinner. I knew I had to talk beforehand.So I'm in the bathroom, you know I felt a little bit like Luca Brasi in The Godfather, practicing my speech. 'On the day of your daughter's wedding....'

 

I could hear, 'Daddy,where are you?' So I came out and I went over the fact that their great-grandfather, my grandfather, had died of Alzheimer's and my mother, which they knew. And now it's come for me...."

To read or listen to the series on public radio or podcast, follow the NPR links here.  O'Brien also has a book, On Pluto - Inside the Mind of Alzheimer's.

January 25, 2015 in Cognitive Impairment, Dementia/Alzheimer’s, Estates and Trusts | Permalink | Comments (0) | TrackBack (0)

Thursday, January 22, 2015

Invisible Men and Women - and Lessons from One Who "Awoke"

If you have a loved one with dementia, particularly if you have watched him or her lose the power to communicate with words, perhaps you have wondered, what are they thinking?  What are they hearing when you talk with them? Are they happy?  Sad? Is confusion the dominant, or only, feeling? 

You sometimes get hints of how they feel, including recognition they may feel profoundly trapped.  I knew one man who, when he could not find the words, would shake his head and howl.  I knew one woman who, when she was younger, used to have clever catch-phrases. By the time she was in her 80s, she had lost the ability to say a favorite phrase but she would say two words -- "Head up"--  over and over. She wanted you to help her complete the phrase.  Her caregivers did not know that she had given hundreds of children horseback riding lessons, and misunderstood her words as a warning, perhaps motivated by paranoia. But, as one of her former students, when I heard her say "Head up" during my visit, I responded -- almost automatically -- with "Heels down." It is an equestrian's mantra for balanced riding.  And she smiled as if we had just completed reciting the Gettysburg Address together. 

With that background, I was captivated by a recent public radio broadcast, now available on an Invisibilia podcast, about the "Locked-In Man."  Following an illness and a coma as a child, Martin Pistorius began to "awaken" during his teens,  but for more than 10 additional years he was unable to talk, or even to signal to people caring for him -- or abusing him -- that he was "aware" of what was happening. 

Imagine being trapped in front of reruns of  "Barney" (television's purple dinosaur) day after day after day, for year after year.  I know a senior care facility that seems to have the "King and I" playing on a television around the clock.  Could Yul Brynner's singing be just as much torture as Barney's for someone who is unable to say "not again?"

Continue reading

January 22, 2015 in Cognitive Impairment, Dementia/Alzheimer’s, Health Care/Long Term Care | Permalink | Comments (0) | TrackBack (0)

Wednesday, January 21, 2015

VSED + Dementia Raise New Questions About Respect for End-of-Life Decisions

A new acronym, VSED, is emerging in discussions of end-of-life decision making.  It refers to Voluntarily Stopping Eating and Drinking. However, what happens when such a plan is combined with increasing dementia? 

As addressed in Paula Span's thoughtful piece for The New York Times' "The New Old Age," it may not be possible to ensure such a plan will be honored, at least not under the existing law of most states. Consider the following example:

"Like many such documents, [Mr. Medalie's Advance Directive] declares that if he is terminally ill, he declines cardiopulmonary resuscitation, a ventilator and a feeding tube. But Mr. Medalie’s directive also specifies something more unusual: If he develops Alzheimer’s disease or another form of dementia, he refuses 'ordinary means of nutrition and hydration.' A retired lawyer with a proclivity for precision, he has listed 10 triggering conditions, including 'I cannot recognize my loved ones' and 'I cannot articulate coherent thoughts and sentences.' 

   

If any three such disabilities persist for several weeks, he wants his health care proxy — his wife, Beth Lowd — to ensure that nobody tries to keep him alive by spoon-feeding or offering him liquids. VSED, short for 'voluntarily stopping eating and drinking,' is not unheard-of as an end-of-life strategy, typically used by older adults who hope to hasten their decline from terminal conditions. But now ethicists, lawyers and older adults themselves have begun a quiet debate about whether people who develop dementia can use VSED to end their lives by including such instructions in an advance directive...."

For more, continue reading  "Complexities of Choosing End Game for Dementia."  Thanks to Elder Law Attorney Morris Klein for sharing this good article.

 

January 21, 2015 in Advance Directives/End-of-Life, Cognitive Impairment, Dementia/Alzheimer’s, State Cases, State Statutes/Regulations | Permalink | Comments (0) | TrackBack (0)