Wednesday, December 6, 2017

Arizona State Presents Legal, Policy and Ethical Perspectives on "The Aging Brain"

On December 8, 2017, I'm excited to be participating in a conference on The Aging Brain: Legal, Policy & Ethical Perspectives, in Phoenix, Arizona.  This program is a follow-up to an interdisciplinary workshop hosted at Arizona State University's Sandra Day O'Connor School of Law in the fall of 2016. This year's presentations will take place at the the United States Courthouse in Phoenix.

The planned schedule is jam-packed with speakers I'm looking forward to hearing, including:

Welcome: Betsy Grey, Sandra Day O’Connor College of Law, ASU

Introduction: Dean Douglas Sylvester, Sandra Day O’Connor College of Law, ASU

Keynote Speaker:Richard H. Carmona, M.D., M.P.H., FACS, 17th Surgeon General of the United States, Chief of Health Innovations, Canyon Ranch, Distinguished Professor, University of Arizona

Scientific Developments in Aging and Dementia: Pre-Symptomatic Screening for Neurodegenerative Diseases

    Panel Chair: Hon. Roslyn O. Silver, U.S. District Court for the District of Arizona

  • Dr. Richard Caselli, Mayo Clinic
  • Dr. Jessica Langbaum, Banner Alzheimer's Institute
Ethical, Legal, and Social Implications
       Panel Chair:  Michael Saks, Sand Day O'Connor College of Law
  • Dr. Cynthia M. Stonnington, Mayo C;inic
  • Jalayne J. Arias, UCSF Neurology, Memory and Aging Center
  • Henry T. Greely, Stanford Law School

Aging at Home

    Panel Chair: Larry J. Cohen, The Cohen Law Firm

  • David Coon, College of Nursing & Health Solutions, ASU
  • Kent Dicks, Life365, Inc.
Competency and Incapacity: Assessment and Consent

    Panel Chair: Charles L. Arnold, Frazer Ryan Goldberg & Arnold, LLP

  • Hon. Jay M. Polk, Probate Dep’t. Associate Presiding Judge, Superior Court of Arizona for Maricopa County
  • Katherine Pearson, Dickinson School of Law, Pennsylvania State University
  • Dr. Elizabeth Leonard, Neurocognitive Associates
  • Betsy Grey, Sandra Day O’Connor College of Law, ASU

End of Life

    Panel Chair: Dr. Mitzi Krockover, Health Futures Council at ASU

  • Jason Robert, Lincoln Center for Applied Ethics, ASU
  • Amy McLean, Hospice of the Valley
  • Dr. Patricia A. Mayer, Banner Baywood & Banner Health Hospitals

Keynote:

Dr. Susan Fitzpatrick, President, James S. McDonnell Foundation
Introduction by Jason Robert, Lincoln Center for Applied Ethics, ASU

December 6, 2017 in Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship, Estates and Trusts, Ethical Issues, Federal Cases, Health Care/Long Term Care, Science, Statistics | Permalink | Comments (0)

Tuesday, November 21, 2017

New Publication: Old & Sick in America

Dr. Muriel Gillick, a Professor of Population Medicine at Harvard Medical School and the director of the Program in Aging at Harvard Pilgrim Health Care Institute had a new book.  Old & Sick in American: The Journey Through the Health Care System sounds like it hits the nail on the head, demonstrating topics that a wise consumer will need to recognize in order to navigate biases and weaknesses in the system. 

For a timely Q & A interview with the author, see How Older Patients Can Dodge Pitfalls Entrenched in Health Care System, published by California Healthline. 

November 21, 2017 in Books, Consumer Information, Health Care/Long Term Care, Medicaid, Medicare, Science | Permalink | Comments (0)

Wednesday, November 15, 2017

Shortages of Specialists to Screen and Diagnose Early Stages of Neurocognitive Diseases Are Part of the Looming Problem

A recent study by the Rand Corporation points to related problems with diagnosis AND  treatment of Alzheimer's Disease and other neurocognitive disorders. Even as there is a growing need for effective treatment, there are "too few medical specialists to diagnose patients who may have early signs of Alzheimer's" and thus become eligible for therapies that might slow or or halt progression of such diseases.   From the Rand news release:  

“While significant effort is being put into developing treatments to slow or block the progression of Alzheimer's dementia, little work has been done to get the medical system ready for such an advancement,” said Jodi Liu, lead author of the study and a policy researcher at RAND, a nonprofit research organization. “While there is no certainty an Alzheimer's therapy will be approved soon, our work suggests that health care leaders should begin thinking about how to respond to such a breakthrough.”

 

An estimated 5.5 million Americans live with Alzheimer's dementia today, with the number projected to increase to 11.6 million by 2040.

 

Advanced clinical trials are underway for at least 10 investigational therapies that have shown promise in slowing or blocking development of Alzheimer's disease. Researchers say the progress provides guarded optimism that a disease-modifying therapy could become available for routine use within a few years.

 

Liu and her team examined the pathway patients would likely take to receive an Alzheimer's therapy and created a model to simulate the pressures that such an approved therapy would put on the health care system.

 

The analysis assumes that a therapy is approved for use beginning in 2020 and screening would begin in 2019, although researchers stress that the date was chosen only as a scenario for the model, not as a prediction of when a therapy may be approved.

 

Under such a scenario, about 71 million Americans aged 55 and older would have to be screened for signs of mild cognitive impairment. After follow-up examinations and imaging to confirm evidence of Alzheimer's, the RAND analysis estimates 2.4 million people ultimately could be recommended for treatment.

For additional analysis, see The Washington Post's article from its Business Section, We're So Unprepared for Finding An Alzheimer's Treatment. 

Special thanks to George Washington Law Professor (and friend) Naomi Cahn for making sure we did not miss this item.  

November 15, 2017 in Cognitive Impairment, Current Affairs, Dementia/Alzheimer’s, Federal Statutes/Regulations, Health Care/Long Term Care, Science | Permalink | Comments (0)

Tuesday, October 31, 2017

What Happens When the Diagnosis of "Alzheimer's" Isn't the Correct Diagnosis?

On Monday I did a presentation in New Orleans for a conference sponsored by a professional liability insurance organization. My topic was "legal implications of a diagnosis of dementia" as a risk management concern and part of my task was to talk about alternative diagnoses of neurocognitive disorders, especially for clients. 

In part, my message was a note of caution.  Lack of "short term memory" may not be present, and thus attorneys, families and colleagues may not have this early warning sign of cognitive disease.  For example, a frontal lobe disorder can be "early" onset (usually meaning onset before the individual reaches the age of 60).  Language or short term memory problems may not be noticeably impaired, while higher executive functions, especially judgment, can be seriously impacted.  Changes in personality, loss of inhibition (including sexual inhibition), recklessness with money or investments may be signs, but these changes may be mistaken for "a mid-career crisis," or other personality problems unrelated to disease.   

The lawyer who invited me to do this program with him, Mark Tuft from California, has long experience and knowledge of ethical and disciplinary standards for attorneys.  On a related point, he pointed me to a recent Washington Post article, where an individual had been living for two decades with a "fatal" diagnosis of early onset "Alzheimer's Disease," which, as it turns out, may not have been accurate.  The author writes in his essay:  

Two neurologists have stated [recently] that I fall into a fairly new category called suspected non-Alzheimer’s pathophysiology, or SNAP. According to one study, about 23 percent of clinically normal people ages 65 and older and about 25 percent of people with MCI[Mild Cognitive Impairment] have SNAP. For people with both MCI and SNAP, the risk of cognitive decline and dementia is higher than for clinically normal people with SNAP.

 

I was initially diagnosed with MCI. But for the past 10 years, the diagnosis has been Alzheimer’s. It is still officially the diagnosis because information gained in trials — which is how I found out that my amyloid scan was negative and that I probably did not have Alzheimer’s — does not go on a medical record. . . . 

 

I will have to wait for science to catch up before I know for sure. Who knows, I may even be part of the next new term. I just hope it means that what I have will not be progressive and lead to death. The one thing we all should learn from my experience is to take advantage of all the tools we have access to so we can make the best decision possible.

What is next for this individual? He received the latest news with mixture of relief and confusion. Read "I lived with an Alzheimer’s diagnosis for years. But a recent test says I may not have it after all," by 

Thanks, Mark, for sharing your podium in New Orleans with me on Monday and for pointing all of us to this article, which is another reminder of the rapidly changing world of scientific knowledge about cognitive impairments. 

October 31, 2017 in Cognitive Impairment, Current Affairs, Dementia/Alzheimer’s, Ethical Issues, Health Care/Long Term Care, Science | Permalink | Comments (0)

Monday, October 23, 2017

The Latest in Off-Label Prescriptions for Dementia Patients: "The Little Red Pill"

My thanks to my colleague Dermot Groome for pointing me to the CNN investigative series on "The Little Red Pill Being Pushed on the Elderly." The prescription drug in questions is Nuedexta, approved to treat PseudoBulbar Affect or PBA, a "disorder marked by sudden and uncontrollable laughing or crying." (Perhaps you have seen commercials for treatment of PBA with actor Danny Glover effectively portraying the disorder).   

According to the CNN report:

Since 2012, more than half of all Nuedexta pills have gone to long-term care facilities. The number of pills rose to roughly 14 million in 2016, a jump of nearly 400% in just four years, according to data obtained from QuintilesIMS, which tracks pharmaceutical sales. Total sales of Nuedexta reached almost $300 million that year.
 
Concerns about unnecessary prescription, side effects (including a higher incidence of falls), and federal reimbursements for cost are raised by critics:
 
Nuedexta is approved by the Food and Drug Administration (FDA) to treat anyone with PBA, including those with a variety of neurological conditions such as dementia. But geriatric physicians, dementia researchers and other medical experts told CNN that PBA is extremely rare in dementia patients; several said it affects 5% or less. And state regulators have found doctors inappropriately diagnosing nursing home residents with PBA to justify using Nuedexta to treat patients whose confusion, agitation and unruly behavior make them difficult to manage.
 
 
"There has to be a diagnosis for every drug prescribed, and that diagnosis has to be real ... it cannot be simply made up by a doctor," said Kathryn Locatell, a geriatric physician who helps the California Department of Justice investigate cases of elder abuse in nursing homes. "There is little to no medical literature to support the drug's use in nursing home residents (with dementia) -- the population apparently being targeted."
The article notes that Medicare pays for much of the use of this drug in the nursing home setting, and as we've been reported before on other off label prescriptions of  medications, federal regulators have the power to investigate and sanction improper use (not just off-label use) under the False Claims Act and similar anti-fraud regulations.  

October 23, 2017 in Cognitive Impairment, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship, Ethical Issues, Medicare, Science, Statistics | Permalink | Comments (0)

Friday, October 6, 2017

Guns, Aging & Suicide

The last few weeks have been very tough, haven't they?  As have the last few months, and perhaps even the last few years.  

Many seem to be trying to understand why a 64-year-old "retired" man in the U.S. would assemble an arsenal of weaponry, unleash it on a crowd of innocents enjoying a last few weekend hours of music, and then take his own life.  While it is, on a comparative scale, unusual for a 60+ individual to be involved in a mass shooting, "older men" apparently have a comparatively high suicide-by-gun rate.  While there may be no way to understand the motivation for the most recent murders, there are still reasons to ask whether aging and deteriorating cognitive health can be factors in gun-related deaths.  

In the search for some understanding I read Leah Libresco's opinion piece in the Washington Post:  "I used to think gun control was the answer.  My research told me otherwise." 

In that article, her research on the annual 33,000+ gun deaths in America, led her to several interesting observations and conclusions.  She writes, for example, that the statistics showed her:

  • "Two-thirds of gun deaths in the United States every year are suicides."
  • "Older men, who make up the largest share of gun suicides, need better access to people who could care for them and get help."

Libresco's essay sent me in turn to a feature story, part of a FiveThirtyEight series analyzing annual gun deaths, on "Surviving Suicide in Wyoming," by Anna Maria Barry-Jester.  She writes in greater detail about warning signs of deteriorating mental health, especially among older men: isolation, sometimes self-imposed; sleeplessness; depression; anxiety; and unresolved physical health problems. 

As these articles point out, limiting access to guns is appropriate for individuals with suicidal thoughts. That's different than "gun control laws."  And while guns may too often be the means to effectuate "rash desperate decisions," these researchers also suggest the greatest need is for better public awareness and response to warning signs, and for improved diagnosis and access to effective care, including social, mental and physical health care.    

October 6, 2017 in Advance Directives/End-of-Life, Crimes, Current Affairs, Ethical Issues, Federal Statutes/Regulations, Health Care/Long Term Care, Science, State Statutes/Regulations, Statistics | Permalink | Comments (0)

Thursday, August 31, 2017

The Eyes Have It? A New Tool To Detect Alzheimer's?

USA Today ran a story, Can this eye scan detect Alzheimer's years in advance? This short article explains that according to scientists "early indicators of Alzheimer's disease exist within our eyes, meaning a non-invasive eye scan could tip us off to Alzheimer's years before symptoms occur... It turns out the disease affects the retina — the back of the eye — similarly to how it affects the brain, notes neuroscience investigators at Cedars-Sinai Medical Center in California. Through a high-definition eye scan, the researchers found they could see buildup of toxic proteins, which are indicative of Alzheimer's." The study on which this article is based was published in the Journal of Clinic Investigation.  Retinal amyloid pathology and proof-of-concept imaging trial in Alzheimer’s disease is downloadable as a pdf by clicking here. The 19 page article offers this intriguing statement. "Such retinal amyloid imaging technology, capable of detecting discrete deposits at high resolution in the CNS, may present a sensitive yet inexpensive tool for screening populations at risk for AD, assessing disease progression, and monitoring response to therapy." (Warning-there are a lot of detailed photos of eyes in this article).

 

August 31, 2017 in Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Health Care/Long Term Care, Other, Science | Permalink | Comments (0)

Tuesday, August 1, 2017

On Finding Balance in Relationships (and Technology) As One Ages

Over the weekend, I caught an interesting episode of "On Being," with public radio host Krista Tippett.  While the nominal topic was "the good, bad and the  ugly" of the internet, and especially of internet-based social media sites, I found the conversation with her guest relevant on a number of levels, including questions about the importance of healthy relationships and intellectual stimulation for individuals as they age.

The guest speaker, Danah Boyd, a researcher, book author and pro-technology blogger, especially internet technology, talked about concerns that many parents may have, that their children are negatively affected by the amount of time they spend on the internet, whether in the form of Facebook, emails, chatrooms or simply surfing.  "Why don't they just go outside and play together like we did as children, especially in the summer?"

In response, Boyd pointed out that there is a "tremendous amount of fearmongering that emerged in light of 24/7 news...."  She continued:

We created this concern that public spaces like the park were a terrible, terrible place.  We were worried about latchkey children.  We were worried about school buses.  We clamped down on young people, and we started, especially in middle to upper class environments, structuring every day of their lives.

She drew upon examples, including some from Eric Klinenberg, a sociologist who wrote Going Solo to examine the implications of living a "single life," to suggest a possible explanation for young people retreating into the internet is the need to escape the pressures of overly structured daily lives.  

If true, wouldn't the need to escape increase as you get older and encounter more pressure to work, be on time, succeed, and to multi-task?  The need to detach from one-on-one relationships might be greater.

While the program did not talk directly about the upper ages of such a trajectory, as I listened to the program I couldn't help but think there is some greater truth here.  I see some people continue to want to stay engaged in one-on-one social relationships as they move into the "older" of older ages, but I also see many, including some of my own family members, do the exact opposite.  No, they aren't retreating into the internet, but they are retreating from what they might see as pressures to communicate, to be articulate, to "chat" with long time friends or family members. Perhaps for some it is the television, rather than a cell phone or iPad that serves as the protective shield.  

But, for future generations of elders will the internet still be intriguing and continue to offer escape routes?

One of the things that I liked about the "On Being" discussion was the discussion of the importance of striving for balance in the midst of technological changes.  Boyd said:

From my perspective, it’s about stepping back and not assuming that just the technology is transformative, and saying, okay, what are we trying to achieve here? What does balance look like? What does happiness look like? What does success look like? What are these core tenets or values that we’re aiming for, and how do we achieve them holistically across our lives? And certainly, when parents are navigating this, I think one of the difficulties is to recognize that this is what your values are, and they may be different from your child’s values. And so how do you learn to sit and have a conversation of “Here’s what I want for you. What do you want? And how do we balance that?” And that’s that negotiation that’s really hard. And so I think about it in terms of all of us — how do you find your own sense of grounding?

She concludes, suggesting internet technology is an important tool for making connections and having relationships, but "reflection" about life goals is also important.  Or as Boyd says, "There are so many opportunities out there to connect, to communicate, to get information. We need to be more thoughtful about what we want to achieve and how to articulate that in our lives and how to achieve it collectively, individually, and as a community."

August 1, 2017 in Books, Ethical Issues, Science, Web/Tech | Permalink | Comments (0)

Friday, July 28, 2017

Ted Talk: Can Alzheimer's Disease be Prevented?

Neuroscientist Lisa Genova PhD, author of the novel Still Alice (that, in turn, became the movie with Julianne Moore in the leading role), has an encouraging new piece on Ted Talk on what all of us can and should do now to reduce the risk of Alzheimer's or even slow the disease after diagnosis. As she says, "DNA alone does not determine whether you will be symptomatic for Alzheimer's."  It is one of a multi-part feature on Ted Talk addressing various "Prevention" topics.  Here's and NPR link to the 14 minute podcast for Lisa's piece,  "What You Can Do to Prevent Alzheimer's?"

Correction:  My thanks to the readers who caught my typo -- it's "Still Alice," not Still Alive, for the title to the book and movie I've linked here!

 

July 28, 2017 in Cognitive Impairment, Current Affairs, Dementia/Alzheimer’s, Health Care/Long Term Care, Science | Permalink | Comments (1)

Wednesday, July 26, 2017

Dementia Prospects Down?

Good news for all of us!  The July 2017 issue of Today's Research on Aging from the Population Reference Bureau reports a proportional decline in dementia. Dementia Trends: Implications for an Aging America explains that

While the absolute number of older Americans with dementia is increasing, the proportion of the population with dementia may have fallen over the past 25 years, according to a recent U.S. study (Langa et al. 2017). Researchers say this downward trend may be the result of better brain health—possibly related to higher levels of education and more aggressive treatment of cardiovascular risk factors such as high blood pressure and diabetes.

After discussing the research, the research report also notes this

The decline in dementia prevalence coupled with longer life expectancy may be contributing to another change: A growing share of older Americans are spending less of their lifetimes with cognitive impairments, another recent study based on HRS data and vital statistics shows (Crimmins, Saito, and Kim 2016). The gains in life expectancy between 2000 and 2010 represent more time older Americans spend cognitively intact, the researchers report. The share of Americans 65 and older without cognitive problems increased by 4.5 percentage points for men and 3.4 percentage points for women during the decade. At the same time, the average time older people spent with dementia or cognitive impairment shortened slightly.

The report discusses the various theories and work done to help  with "brain training", the correlations (if any) between certain diseases and dementia, and policy and budgetary implications. The report concludes:

Improvements in understanding, diagnosing, preventing, and treating Alzheimer’s disease and other dementias are top NIA priorities. The 2011 National Alzheimer’s Project Act and related legislation lay the foundation and provide new funding for “an aggressive and coordinated national plan to accelerate research.” This initiative includes research designed to better answer the following questions:

•What roles do education and intellectual stimulation play in delaying or preventing dementia?

•What are the connections among dementia, cardiovascular disease, obesity, and diabetes?

•What are the best ways to reduce the dementia risks that minority group members face?

Refining our understanding of the answers to these questions can enable policymakers and

planners to design and test prevention strategies that can contribute to continued future decline

in dementia prevalence.

 

July 26, 2017 in Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Health Care/Long Term Care, Science, Statistics | Permalink | Comments (0)

Monday, May 22, 2017

NAELA Chapter Joins as Amicus for New York Aid in Dying Case

In what is described as a "first" for the National Academy of Elder Law Attorneys (NAELA), the organization through its New York Chapter will present argument on behalf of individuals seeking to establish access to "aid in dying."  On April 27, the New York Chapter was granted leave to appear as amicus curiae in Myers v. Schneiderman before the New York Court of Appeals.  Oral arguments are scheduled in Albany on May 30, 2017.

At issue is New York's penal law prohibiting assistance in "suicides."  The original suit, filed in February 2015, sought a ruling that the statute, characterized by opponents as "antiquated," should be interpreted as not reaching the conduct of a physician that provides aid-in-dying where the patient is terminally ill and mentally competent and voluntarily seeks "terminal medication."  Alternatively, the opponents of the law argue that the statute violates the rights of privacy and/or equal protection guaranteed by the New York State Constitution. New York's trial level court dismissed the challenge as a matter of law, on the grounds that New York's penal law was "clear on its face."  

In joining the challenge to the dismissal, which was affirmed by  appellate division, New York NAELA wrote:

As an organization of lawyers who represent the elderly and persons with disabilities, the New York Chapter [of NAELA] believes that a proper interpretation of New York's "assisted suicide" laws and due consideration of Appellants' constitutional challenges should be based on a fully developed factual record.  These are issues of great moment to the elderly and those who love them and to the administration of justice in this State.  This Court should have the benefit of a hearing and findings of relevant evidence before deciding them. . . .

What would assist this Court in fairly construing the Penal Law are facts relating to aid-in-dying.  While the language of the statute is the starting point for interpretation, its words do not exist in a vacuum.   

For more on the arguments, including links to the various parties' appellate briefs in Myers, see the "End of Life Liberty Project."

 

May 22, 2017 in Advance Directives/End-of-Life, Cognitive Impairment, Discrimination, Ethical Issues, Health Care/Long Term Care, Science, State Cases, State Statutes/Regulations | Permalink | Comments (0)

Thursday, April 20, 2017

94 Year Old Genius

The New York Times ran an article earlier this month about a 94 year old genius. To Be a Genius, Think Like a 94-Year-Old features Dr. John Goodenough. who "at 94, has just set the tech industry abuzz with his blazing creativity. He and his team at the University of Texas at Austin filed a patent application on a new kind of battery that, if it works as promised, would be so cheap, lightweight and safe that it would revolutionize electric cars and kill off petroleum-fueled vehicles." Back when Dr. Goodenough was 23 and starting college, he was told by a professor that he was too old to succeed in his chosen field of physics.  The article mentions how for some creativity increases with age but there are biases and hurdles in their way.

At least in Silicon Valley, the article notes, youth seems to be the common denominator. But, for others "there’s plenty of evidence to suggest that late blooming is no anomaly. A 2016 Information Technology and Innovation Foundation study found that inventors peak in their late 40s and tend to be highly productive in the last half of their careers." Even someone from the Patent Office has noticed that “there’s clear evidence that people with seniority are making important contributions to invention.”

The author asks Dr. Goodenough for his thoughts.

When I asked him about his late-life success, he said: “Some of us are turtles; we crawl and struggle along, and we haven’t maybe figured it out by the time we’re 30. But the turtles have to keep on walking.” This crawl through life can be advantageous, he pointed out, particularly if you meander around through different fields, picking up clues as you go along. Dr. Goodenough started in physics and hopped sideways into chemistry and materials science, while also keeping his eye on the social and political trends that could drive a green economy. “You have to draw on a fair amount of experience in order to be able to put ideas together,” he said.

Plus being a 94 year old scientist is freeing. "Last but not least, he credited old age with bringing him a new kind of intellectual freedom. At 94, he said, 'You no longer worry about keeping your job.'"

April 20, 2017 in Consumer Information, Current Affairs, Other, Science | Permalink | Comments (0)

Friday, March 17, 2017

Alzheimer's and Marijuana-The Federal Block

I've blogged a couple of times recently about the fight against Alzheimer's disease.  Here's a recent story about research efforts stymied by federal law.  Big Alzheimer's research roadblock: Federal government was published by CNBC on March 9, 2017.   "Promising new research conducted last year at the Salk Institute for Biological Studies has shown that marijuana extracts may hold a key to treating Alzheimer's disease. The next step: To conduct tests on mice and, if the results are promising, move on to human trials. But Salk Institute researchers have run into a major hurdle, and not a scientific one: the federal government. The Salk Institute is based in La Jolla, California — a state that legalized marijuana last November — but it is a federally funded research institute."

The story reminds us that although marijuana use may be legal in several states, it's still not ok at the federal level-it's still a controlled substance. And when a research institute like Salk gets federal dollars for research, there's a problem.

So does this mean a dead end for marijuana/Alzheimer's research? Not necessarily. There is a path, but it won't be a quick or guaranteed one. "In order to acquire marijuana for further studies, the lab must first apply to the Drug Enforcement Agency, which carries out the application process jointly with the U.S. Department of Health and Human Services. The Salk researchers sent in their application in December...."  It takes several months for such a request to be approved.  The article discusses the costs of Alzheimer's disease  (which we have written about in prior posts)

The cost to the economy of caring for Alzheimer's and dementia patients was estimated to be about $236 billion in 2016. In 2015 a study funded by the National Institutes of Health estimated that the costs associated with late-stage dementia are greater than for any other disease.

During the last five years of a person with dementia's life, total health-care spending was more than a quarter of a million dollars per person ($287,038), about 57 percent greater than costs associated with death from other diseases, including cancer ($173,383) and heart disease ($175,136).

We all know how important it is to find an effective treatment (or even cure?) for Alzheimer's.  For now, the folks at Salk have to wait to hear if they can move forward.

BTW, those astute readers will notice the url for the story includes the phrase "major buzz kill." To  follow up, I'll close now with some my own pithy phrase,  "dude, serious bummer".  You insert your own pithy phrase here.....

March 17, 2017 in Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Health Care/Long Term Care, Science | Permalink | Comments (0)

Tuesday, March 7, 2017

In Case You Missed It: Sister Shares Moving Account of Early Onset Dementia

From the Washington Post, an especially moving account written by former White House Communications Director Jennifer Palmieri about her sister, who died at age 58 following some ten years with "early onset" Alzheimer's:

Every day, more Americans receive the devastating news that someone in their family has this affliction. For now, there is not a lot of hope for recovery. It can make you envious of cancer patients; their families get to have hope. Having come through this experience with my sister, I am afraid that I can’t offer these new Alzheimer’s families hope for a recovery. But I do hope that by relaying the story of my sister’s journey, I can offer them some peace.

 

My sister Dana was brilliant, beautiful, full of positive energy, a force of nature. She was not an easy person. She was driven and successful, and, as the disease progressed unbeknown to all of us, it became harder to connect with her. Ironically, that began to change once she got the diagnosis.

 

When she called each of us with the news, she already had it all figured out. We were all to understand that, really, she saw the diagnosis as a blessing. It was going to allow her to retire early. It would motivate our family to spend time together we would not have otherwise done. It would shorten her life, but she would make sure the days she had left were of the highest quality.

The thoughtful piece can help all of us as we and our family members tackle challenges.  For more, read The Blessings Inside my Sister's Alzheimer's Disease.

March 7, 2017 in Advance Directives/End-of-Life, Cognitive Impairment, Dementia/Alzheimer’s, Ethical Issues, Retirement, Science | Permalink | Comments (0)

Tuesday, February 28, 2017

More on Supreme Court Nominee Neil Gorsuch on End-of-Life Issues

Paula Span, the thoughtful columnist on aging issues from the New York Times, offers "Gorsuch Staunchly Opposes "Aid-in-Dying." Does It Matter?"   The article suggests that the "real" battle over aid-in-dying will be in state courts, not the Supreme Court.

I'm in the middle of reading Judge Gorsuch's 2006 book, The Future of Assisted Suicide and Euthanasia. There are many things to say about this book, not the least of which is the impressive display of the Judge's careful sorting of facts, legal history and legal theory to analyze the various advocacy approaches to end-of-life decisions, with or without the assistance of third-parties.  

With respect to what might reach the Supreme Court Court, he writes (at page 220 of the paperback edition): 

The [Supreme Court's] preference for state legislative experimentation in Gonzales [v. Oregon] seems, at the end of the day, to leave the state of the assisted suicide debate more or less where the Court found it, with the states free to resolve the question for themselves.  Even so, it raises interesting questions for at least two future sorts of cases one might expect to emerge in the not-too-distant future.  The first sort of cases are "as applied" challenges asserting a constitutional right to assist suicide or euthanasia limited to some particular group, such as the terminally ill or perhaps those suffering grave physical (or maybe even psychological) pain....

 

The second sort of cases involve those like Lee v. Oregon..., asserting that laws allowing assisted suicide violate the equal protection guarantee...."

While most of the book is a meticulous analysis of law and policy, in the end he also seems to signal a personal concern, writing "Is it possible that the Journal of Clinical Oncology study is right and the impulse for assistance in suicide, like the impulse for old-fashioned suicide, might more often than not be the result of an often readily treatable condition?" 

My thanks to New York attorney, now Florida resident, Karen Miller for pointing us to the NYT article.

February 28, 2017 in Advance Directives/End-of-Life, Consumer Information, Crimes, Dementia/Alzheimer’s, Discrimination, Elder Abuse/Guardianship/Conservatorship, Ethical Issues, Federal Cases, Health Care/Long Term Care, Religion, Science, State Cases, State Statutes/Regulations | Permalink | Comments (0)

Friday, February 10, 2017

Setting New Fitness Records at 100+

When I first saw the news stories of the French cyclist who had set a cycling record for sixty minutes, I wasn't particularly impressed -- that is, until I realized that Mr. Robert Marchand is now age 105 and he's trying to break his own record of almost 17 miles per hour, set when he was 103.  Turns out this is part of a much larger story about fitness in aging.  From the New York Times:  

At the age of 105, the French amateur cyclist and world-record holder Robert Marchand is more aerobically fit than most 50-year-olds — and appears to be getting even fitter as he ages, according to a revelatory new study of his physiology.

 

The study, which appeared in December in the Journal of Applied Physiology, may help to rewrite scientific expectations of how our bodies age and what is possible for any of us athletically, no matter how old we are.

For more, read Lessons on Aging Well, From a 105 Year-Old Cyclist.  Inspiration for your own weekend workout, perhaps! 

February 10, 2017 in Consumer Information, Health Care/Long Term Care, Retirement, Science, Sports | Permalink

Wednesday, January 25, 2017

Age-Related Memory Loss vs. Alzheimer's Disease

The winter issue of Columbia University's Magazine has an article on Your Beautiful Brain: Dispatches from the Frontiers of Neuroscience.  I was particularly interested in the account of Nobel Prize-winning Professor Eric Kandel's 50+ years of research that began by looking at Aplysia -- a "blobby mollusk with protruding feelers that resemble rabbit ears" -- thus contributing to the mollusk's nickname, the "sea hare."

Clearly to Professor Kandel, the mollusks' brains were beautiful, not least because their comparatively large neural structures provided an accessible way to study more complex structures such as the human brain. Dr. Kandel, now 87, admits that "hunches" have played a role in his research.  

From Columbia Magazine:  

Today, as neuroscientists worldwide pursue remedies for Alzheimer’s and age-related memory loss, Kandel’s half century of findings are considered indispensable. Substantive therapies for Alzheimer’s in particular are “poised for success,” says Jessell, a colleague of Kandel’s for thirty-five years. “We’re on the cusp of making a difference.” But accompanying that claim is a caveat; the fledgling remedies are not panaceas. “We’re not necessarily talking about curing the disease,” he says. “But we are talking about slowing the symptomatic progression of the disease so significantly that lifestyles are improved in a dramatic way. If in ten years we have not made significant progress, if we are not slowing the progression of Alzheimer’s, then we have to look very seriously at ourselves and ask, ‘What went wrong?’”

 

Breakthroughs could happen sooner, however. Some of the Alzheimer’s medications available now “probably work,” says Kandel, except for one obstacle: “By the time patients see a physician, they’ve had the disease for ten years. They’ve lost so many nerve cells, there’s nothing you can do for them.” Possibly, with earlier detection, “those same drugs might be effective.” That’s not a certainty, insists Kandel, only a “hunch.”

Professor Kandel has also explored the biological differences between "ordinary" age-related memory loss and Alzheimer's Disease.  

Years ago, Kandel had another hunch — that age-related memory loss was not just early-stage Alzheimer’s, as many neuroscientists believed, but an altogether separate disease. After all, not everyone gets Alzheimer’s, but “practically everyone,” says Kandel, loses some aspects of memory as they get older. And MRI images of patients with age-related memory loss, as demonstrated by CUMC neurology professor Scott Small ’92PS, have revealed defects in a brain region different from those of the early-stage Alzheimer’s patients.

 

Kandel also knew mice didn’t get Alzheimer’s. He wondered if they got age-related memory loss. If they did, that would be another sign the disorders were different. His lab soon demonstrated that mice, which typically have a two-year lifespan, do exhibit a significant decrease in memory at twelve months. With that revelation, Kandel and others deduced Alzheimer’s and age-related memory loss are distinct, unconnected diseases.

 

Then Kandel’s lab (again, with assistance from Small) discovered that RbAp48 — a protein abundant in mice and men — was a central chemical cog in regulating memory loss. A deficit of RbAp48 apparently accelerates the decline. Knocking out RbAp48, even in a young mouse brain, produces age-related memory loss. But restoring RbAp48 to an old mouse brain reverses it.

 

Now what may be the eureka moment — this from Gerard Karsenty, chairman of CUMC’s department of genetics and development: bones release a hormone called osteocalcin. And Kandel later found that osteocalcin, upon release, increases the level of RbAp48.

 

“So give osteocalcin to an old mouse, and boom! Age-related memory loss goes away.”

 

The same may prove true in humans. A pill or injectable could work, says Kandel: “Osteocalcin in a form people can take is something very doable and not very far away.” In less than a decade, age-related memory loss might be treatable. “This,” he says, “is the hope.”

For more on beautiful brains, read the full article on Columbia University's website. 

January 25, 2017 in Cognitive Impairment, Dementia/Alzheimer’s, Ethical Issues, Science | Permalink | Comments (0)

Tuesday, January 24, 2017

New PBS Documentary on Alzheimer's to Air Nationally on Wednesday, January 25

A new one hour documentary, Alzheimer's: Every Minute Counts, is scheduled to begin airing nationally on PBS stations on Wednesday, January 25.  

In part, the documentary will focus on research funding issues.  Dr. Ruby Tanzi, a Harvard Medical School researcher who appears on the film, explained for NextAvenue's website:

We should be absolutely panicked at the government level. When the Medicare and Medicaid [treatment and care] bill for Alzheimer’s goes from one in five dollars to one in three dollars — that could happen over the next decade with baby boomers getting older — we could single-handedly collapse Medicare and Medicaid with Alzheimer’s disease.

 

Now, the government [research funding for Alzheimer's] has gone up to about a billion dollars. Which is great, it’s more money. It’s still not the billions of dollars that go to other age-related diseases. I’m glad that cancer and heart disease and AIDS get many billions of dollars, but Alzheimer’s has to get as much or more now given the epidemic and the urgency here with how many cases we’re going to have.

 

It’s going to crush us. Never mind the social burden on the families. I might add that two-thirds of patients are women. And most caregivers are women. What’s going to happen when so much of our female population is (struck) with this disease? So it’s a huge problem and if we don’t throw a ton of money at it now, it’ll be a disaster.

For more information on the documentary, including links to watch it on-line (free!), see PBS "Alzheimer's: Every Minute Counts." There is an important opportunity here for schools, including law schools, to host an airing of the documentary to promote discussion about strategies.  

January 24, 2017 in Cognitive Impairment, Current Affairs, Dementia/Alzheimer’s, Ethical Issues, Federal Statutes/Regulations, Film, Medicaid, Medicare, Science, Statistics | Permalink | Comments (0)

Wednesday, January 11, 2017

"The Aging Brain" as a Focus for Collaborative Analysis and Research

I'm much overdue in writing about a terrific, recent workshop at Arizona State University's Sandra Day O'Connor College of Law on "The Aging Brain." For me it was an ideal gathering of disciplines, including experts in neurology, psychology, health care (including palliative care and self-directed aid-in-dying), the judiciary, and both practitioners and academics in law (not limited to elder law).  Even more exciting, that full day workshop (11/18/15) will lead into a public conference, planned for fall 2017.  

Key workshop moments included:

  • Preview of a potentially ground-breaking study of early-onset Alzheimer's Disease (AD) centered on a family cluster in the country of Columbia with a genetic marker for the disease and a high incidence of onset.  By "early onset," we're talking family members in their 40s.  The hope is that by studying the bio-markers in this family, that not only early onset but later-in-life onset will be better understood. Eric Reiman, with professional affiliations with Banner Health, Arizona State University and University of Arizona, spoke at the workshop, and, as it turned out, he was also featured on a CBS 60 Minutes program aired a short time later about the family-based study.  Here's a link to the CBS transcript and video for the 60 Minutes program on "The Alzheimer's Laboratory."  
  • Thoughtful discussion of the ethical, legal and social implications of dementia, including the fact that self-directed aid-in-dying is not lawful for individuals with cognitive impairment. Hank Greely from Stanford University Law and Medical Schools, and Professor Betsy Grey for ASU's Sandra Day O'Connor College of Law led discussions on key issues.  As biomarkers linked to AD are identified, would "you" want to know the outcome of personal testing?  Would knowing you have a genetic link to AD change your life before onset? 
  • Overview of recent developments in "healthy" brain aging and so-called "anti-aging" treatments or medications, with important questions raised about whether there is respected science behind the latest announcement of "breakthroughs." Cynthia Stonnington from the Mayo Clinic and Gary Marchant from ASU talked about the science (or lack thereof), and Gary raised provocative points about the role of the FDA in drug approvals, tracking histories for so-called off label uses for drugs such as metformin and rapamycin.  

I very much appreciate the opportunity to participate in this program, with special thanks to Betsy Grey and federal Judge Roslyn Silver for making this possible.  I've also enjoyed serving as occasional guest in Judge Silver's two-semester Law and Science workshop with ASU law students. Thank you! For more on the Aging Brain programming at ASU, see here.    

January 11, 2017 in Advance Directives/End-of-Life, Cognitive Impairment, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship, Estates and Trusts, Ethical Issues, Federal Statutes/Regulations, Health Care/Long Term Care, Programs/CLEs, Science | Permalink | Comments (0)

Friday, January 6, 2017

Alzheimer's: Greater Impact on Women?

I was reading a recent blog post on the Scientific American  that featured a guest blog by Dr. Snyder, the Senior Director of Medical and Scientific Operations, Medical and Scientific Relations for the Alzheimer's Association. The blog, Alzheimer's Falls More Heavily on Women Than on Men, opens with two vignettes of women who early-onset Alzheimer's.

Alzheimer’s dementia disproportionately affects women in a variety of ways. Compared with men, 2.5 times as many women as men provide 24-hour care for an affected relative. Nearly 19 percent of these wives, sisters and daughters have had to quit work to do so. In addition, women make up nearly two-thirds of the more than 5 million Americans living with Alzheimer’s today.

The blog explains that researchers are studying this to see if they can find the answer, but longevity alone isn't likely it.  The post also reports on the work of the Alzheimer's Association including a funding initiative for 9 research projects. Some are looking at lifestyle factors including stress and education. The article concludes with a discussion of the role and importance of advocacy

January 6, 2017 in Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Health Care/Long Term Care, Science | Permalink | Comments (0)