Friday, April 20, 2018
Recently the Washington Post published an article comparing generational alcohol intake. Teenagers and college-age people drink less while this group pours another round opens with this observation "[e]xperts on alcohol abuse have found one demographic group that’s drinking at an alarming rate. Not teenagers. Not college-age people. It’s baby boomers." The first few paragraphs of the article focus on younger individuals and then turns to Boomers, noting that it's "been known for half a century is that baby boomers tend to like alcohol more than the “silent generation” that preceded them."
"Researchers see a steady rise in alcohol use and binge drinking — as well as what’s known as Alcohol Use Disorder (AUD), an umbrella term for mild, moderate and severe abuse of alcohol — in the 65-plus demographic. Between 2005 and 2014, the percentage of older Americans who reported engaging in past-month binge drinking (defined as women consuming four or more drinks in about two hours, and men consuming five or more) increased from 12.5 percent to 14.9 percent ... [and] [t]he increase in drinking among older Americans is most pronounced among people with greater levels of education and income, and among women.... At continuing care communities, alcohol is typically available as a social lubricant for the majority of residents who haven't graduated to assisted living...."
according to one expert quoted in the article.
One thing that is implicated in this is the perception or impression that moderate alcohol consumption is healthy. "[M]any boomers have embraced the notion that moderate drinking is good for them, compared to abstaining. The evidence there is mixed. A number of studies have shown a reduction in heart attacks among moderate drinkers. But a new study published in the Lancet last week showed no overall improvement in life expectancy among people who had one drink a day compared to those who abstained, and a decrease in life expectancy with any additional drinking. The study's authors concluded that the reduction in heart attacks was offset by other health risks."
Wednesday, April 11, 2018
The Alzheimer's Association has released their annual facts and figures report. 2018 Alzheimer's Disease Facts & Figures also includes a special report on the benefits (personal and financial) of early diagnosis. Here are some highlights of topics covered in the report:
Brain changes that occur with Alzheimer’s disease …
Revised guidelines for diagnosing Alzheimer’s disease …
Number of Americans with Alzheimer’s dementia nationally … and for each state …
Proportion of women and men with Alzheimer’s and other dementias …
Lifetime risk for developing Alzheimer’s dementia …
Number of deaths due to Alzheimer’s disease nationally … and for each state … and death rates by age …
Number of family caregivers, hours of care provided, and economic value of unpaid care nationally and for each state …
The impact of caregiving on caregivers …
National cost of care for individuals with Alzheimer’s or other dementias, including costs paid by Medicare and Medicaid and costs paid out of pocket …
Medicare payments for people with dementia compared with people without dementia
Benefits of earlier detection of Alzheimer's disease …
Cost savings of diagnosing during the earlier mild cognitive impairment stage rather than the dementia stage …
There is a lot of helpful information and statistics in the report. The chart showing the numbers of those with Alzheimer's in 2018 compared to the projections for 2025 is very useful. (Just fyi, my state is expected to have a 33.3% increase). Consider this from page 21 of the report:
“[B]etween 2018 and 2025 every state across the country is expected to experience an increase of at least 13 percent in the number of people with Alzheimer’s. These projected increases in the number of people with Alzheimer’s are due to projected increases in the population age 65 and older in these states. The West and Southeast are expected to experience the largest percentage increases in people with Alzheimer’s between 2018 and 2025. These increases will have a marked impact on states’ health care systems, as well as the Medicaid program, which covers the costs of long-term care and support for some older residents with dementia.”
Tuesday, April 10, 2018
According to the New York Times, late last month, the House of Representatives passed the right to try bill on their second attempt. House Passes Bill That Would Give Patients Access to Experimental Drugs explains that "[s]upporters said the bill would give dying patients a chance to obtain potentially helpful prescription drugs without waiting for the completion of clinical trials or going through a process established by the Food and Drug Administration to allow the use of “investigational drugs” outside clinical trials." There were supporters as well as opponents of the bill.
The House and Senate bills would establish a new pathway providing access to unapproved medicines for certain patients who had exhausted other treatment options. To qualify under the House bill, a patient would have to have some kind of terminal illness: a condition that is likely to cause death “within a matter of months” or “irreversible morbidity that is likely to lead to severely premature death.”
Nothing in the bill would require pharmaceutical companies to provide experimental drugs to patients who requested them. Drug manufacturers sometimes turn down requests because they have only a limited supply or they are concerned about legal and medical risks.]
To address such concerns, the legislation would shield drugmakers, doctors and hospitals from some of the legal risks of providing unapproved drugs to patients. Doctors and hospitals would generally be protected unless they engaged in gross negligence or willful, reckless or criminal misconduct.
Thursday, March 29, 2018
Penn State's Dickinson Law Hosts Pennsylvania Judges for Program on "Dementia Diagnosis and the Law"
On 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
- Welcome by Dean Gary Gildin, Dickinson Law
- Keynote Presentation: Age-Related Cognitive Decline
- Krish Sathian, M.D., Ph.D., Professor of Neurology and Chair of the Department of Neurology for Penn State College of Medicine and Penn State Health Milton S. Hershey Medical Center
- Medical Perspectives – Responding to Legal and Ethical Quandaries of a Diagnosis: Two Brief Vignettes
- Associate Professor Claire Flaherty, Ph.D., Penn State College of Medicine, Department of Neurology
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
- Daniel C. Marson, Ph.D., JD., Professor Emeritus, Department of Neurology, School of Medicine, University of Alabama at Birmingham
- 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:
- The Honorable Lois Murphy, Judge, Montgomery County Court of Common Pleas
- The Honorable Paula Ott, Judge Superior Court of Pennsylvania
- Sally L. Schoffstall, Schoffstall Elder Law LLC, Orefield, PA.
- Laurel S. Terry, H. Laddie Montague Jr. Chair in Law & Professor of Law, Penn State’s Dickinson Law
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)
Tuesday, March 27, 2018
The Hidden Brain is a great radio program with frequent stories relevant to aging. A recent episode is titled Guys, We Have A Problem: How American Masculinity Creates Lonely Men. Frankly, I think the title doesn't do the episode justice, as although the episode focuses primarily on the potentially disproportionate likelihood of isolation and loneliness for men as they get older, many of the program's most important points strike me as applying equally to anyone who finds his or her life becoming more isolated.
One interview explored the moving personal history of a lawyer, Paul Kugelman, as he went through life, starting with disconnections connected to frequent military-service-connected family relocation, followed by his own divorce and struggles with work/life balance, a temptation to drink, and a a recovery strategy that included completing an Iron-Man Marathon. But running wasn't enough. Over-reliance on a spouse put enormous pressure on the relationship. He had to learn new skills to create new friendships.
The program also explored findings from an early Harvard study of American men, now known as the Harvard Study of Adult Development, a study that has been on-going, with various adjustments based on funding sources, for 8 decades. One question asked over the entire course of the study's history was deceptively simple:
Who would you call in the middle of the night if you were sick or afraid?
It turns out that if men had a solid answer to that question, they were happier with their lives and their marriages. "There were also connections with the men's answers to that question and their physical health. Very strong connections."
The program dug deeper into physical health and emotional connections, suggesting that we should think about how coming into work on a Monday morning. Do you look forward to seeing people you like? That connection is energizing. And calming.
The program explained that studies show that the people who are "happiest in retirement are those who actively work to replace colleagues with friends." "Spending time building and nurturing your friendships might be just as important to your health as eating right and exercising."
Bottom line: Don't miss the warning signs that your social circles are shrinking, regardless of gender.
Monday, February 12, 2018
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.
Monday, January 22, 2018
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.
Wednesday, January 17, 2018
I've sat in on dozens of mental acuity screening exams for individuals exhibiting indications of some form of dementia.
Regarding the "perfect score" reportedly received by President Donald Trump on a mental acuity screening test during his January health exam, it may be helpful to consider what is -- and isn't -- covered by such assessments. One view is provided in an opinion piece this week in the Washington Post, using history from a criminal case where Brooke Astor's son and an attorney were found guilty of exploiting her alleged mental incapacity. From the article:
On its surface, the Montreal Cognitive Assessment (MoCA) test seems pretty easy. Can you draw a three-dimensional cube? Can you identify these various animals? Can you draw a clock? Can you repeat back the phrase, “The cat always hid under the couch when dogs were in the room”? . . .
If you look at the test, it’s pretty hard to see how you could not score a 30. You see a picture of a lion and have to identify it as a lion? That old joke about how the elderly and toddlers are subject to the same indignities seems pertinent here: Is this really the bar that needs to be met to demonstrate full mental capabilities?
Well, according to those who study dementia and other mental deterioration, yes.
In 2009, I spent six months serving on a jury in the state of New York that was asked to judge the guilt or innocence of a man named Anthony Marshall. Marshall was the son of Brooke Astor, a New York socialite and heiress to the much-diminished Astor fortune. If you’ve ever traveled to New York, you’ve encountered the name: Astor Place, the Waldorf-Astoria or the Astoria neighborhood in Queens. Marshall was accused of having taken advantage of Astor’s diminished mental state to change her will without her being aware of the changes made. Ultimately, the 12 members of the jury found Marshall guilty of several charges.
Over the course of that trial, we were presented with a great deal of information about how doctors assess the mental capabilities of a patient. This was critical to the prosecution; were they not able to prove that Astor’s mental state was diminished, it undercut their argument that Marshall had acted without his mother’s consent. As such, expert witnesses testified about their personal examinations of Astor and others spoke to the reliability of the tests.
Central to that case was one of the components of the MoCA test: drawing a clock. Astor was asked repeatedly to draw analog clocks as a test of her mental acuity. On more than one occasion, she was unable to do so properly. . . .
The point is not that the test is easy. The point is that an inability to complete aspects of the test reveals different types of mental decline. The clock test is about executive brain function: memory, planning ahead. The different parts of the MoCA are labeled according to what they test, with the clock test falling under “visuospatial/executive.” Questions about the current year and date are under “orientation.” The request to identify a drawing of a camel is under “naming.” In the test’s scoring instructions, it explains what is covered: “attention and concentration, executive functions, memory, language, visuoconstructional skills, conceptual thinking, calculations and orientation.”
It is, as Trump’s doctor noted, a tool for identifying early signs of mental deterioration, like the mental version of a blood sample on which your doctor runs a battery of tests. It’s not the SAT; it’s a screening device.
For more, read Why You May Be Misunderstanding the Mental Test that Trump Passed with Flying Colors, by Philip Bump.
January 17, 2018 in Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Discrimination, Elder Abuse/Guardianship/Conservatorship, Ethical Issues, Science | Permalink | Comments (0)
Tuesday, January 16, 2018
Those Boomers (or should I say, more accurately, we boomers). We invented lots of things (if you ask us) including rock 'n roll and now we are experiencing hearing loss. It was only a matter of time.... after years of playing all that rock music so loudly (of course our parents warned us), we are reaping the after effects-hearing loss (this is a tongue in cheek statement, BTW). Baby boomers destroyed their hearing. Biotech is trying to fix it
opens with these paragraphs
Baby boomers grew up with music blasting from dorm room turntables, car stereos, and arenas where the sound of a band at full throttle could rival the roar of a jet engine. Volume became an act of generational defiance. As rocker Ted Nugent put it: “If it’s too loud, you’re too old.” ... Turns out, it was too loud. Millions of boomers are now grappling with hearing loss — some of it caused by turning the volume to 11 — prompting companies to develop treatments that improve upon the expensive and often limited-value hearing aids and surgical implants that have been around for decades.
Intrigued. Find yourself amongst those who maybe played your music at "11"? Want to read more? The Boston Globe also an the article. The article looks at the frequency (no pun intended, honestly) of hearing loss and it's a lot, the treatments being researched, and more. And before you go off to tell your children to turn down the volume on their music, the article notes noise isn't the only reason for hearing loss. Some of it is genetic and another is age related. Technology plays a role as well, with one expert noting the impact of leaf blowers and ear buds. Different devices and developing drugs are being studied as an option for those with hearing loss.
Monday, January 8, 2018
Over the holidays, unfortunately I had the experience of learning more about how older consumers struggle to understand what safe and effective treatments are available. In this instance, my mother, in her 90s, was experiencing overwhelming back pain. She has a long-history of osteoporosis (and it runs in the family on the female side, so my sister and I pay particular attention to this issue!) and in the last few weeks without any known "accident," she had begun to find it almost impossible to walk without pain. She's not the complaining type, and, having been raised by parents who were Christian Scientists, she tends to follow a "mind over matter" approach to this kind of problem. But, by Sunday last week, it was no longer possible to pretend she wasn't deeply uncomfortable.
We began another health care odyssey. Some of the steps we had already learned from past "holiday" experiences with my parents, including calling the "non-emergency" 911 number to get an experienced EMT evaluation of her status in the home, and, if necessary, a transport from her home to the emergency room. Then, recognizing that New Year's Eve is probably not the best night (if such a thing even exists) to spend in the local hospital's ER, we decided to go early in the morning.
Five hours after our arrival in the ER, we left with a new "LSO" back brace, instructions on how to use it, and prescriptions for a different walker and a new pain medication. On the latter point, we informed the ER physician of the fact Mom had not done well on narcotic pain relievers in the past ("why are those ants crawling on the walls") but we were told the drug prescribed was like a very strong Ibuprofen, but in a formulation that would not interact with the blood thinner she was on or her pacemaker.
We duly stopped at the pharmacy on the way home, and I signed my life away in order to pick up her prescription as she was unable to walk in to get it herself. When we got home, there were two documents in the bag with the prescription, including what I would call a typical "product insert" that looks like a page from the Physician's Desk Reference and a second sheet entitled "Directions for Use." The top of the instructions warned, "This is a narcotic drug and not recommended for the relief of pain in...." And then the list of disqualifying conditions included at least 3 of my mother's age-related conditions. Yikes!
My sister and I are not usually intimidated by product inserts, but here the instructions seemed directly at odds with our concerns about narcotics for mom. Everything we found on the internet only made us more confused and worried.
By this time it was late on New Year's Eve, her pain was increasing, and we knew we couldn't persuade her to go back to the ER and her primary care physician wasn't on call. The bottle said "every 6 hours." The ER physician had orally told us "every 6 to 8 hours," and finally we knew we had no choice -- her pain was real and we started using it at 12 hour intervals, gradually moving down to 8 hour intervals before she seemed to have real relief. It was another 5 days before her very kind primary care physician could squeeze us in for an appointment to have a more complete conversation -- and the good news is that we are now more comfortable about a longer range plan.
So on the heels of that multi-day experience, I was very interested in an article I spotted for my airplane trip home to Pennsylvania from Arizona. Phoenix Magazine had a detailed feature story in their January 2018 issue on "Pharma Chameleon," reporting on the arrest for fraud and racketeering charges of INSYS Therapeutics founder, a "billionaire executive" in Phoenix, well-known for his work on painkiller medicines. The history of this executive has nothing to do with my mother's pain relief medicine, but it was definitely a reminder that the pharmaceutical industry is deeply involved in pursuit of the "next" generation of painkillers. And, of course, this article contrasts with the recent news that a different drug company is dropping R & D for a dementia drug. Pain-killers are still "in," and dementia drugs apparently are "out."
So, I recommend the Phoenix Magazine article! I was particularly struck by this paragraph:
In November, Kapoor [the Phoenix-based INSYS executive arrested by the feds] pleaded not guilty to all charges and is currently awaiting trial, along with the six other former executives, who pleaded not guilty last January. All have severed ties with INSYS, which continues to do business. In July, it received FDA approval for a new drug, Syndros, a synthetic form of THC, the psychoactive component found in cannabis, to treat chemotherapy-induced nausea and loss of appetite in AIDS patients. As it did with Subsys, the company is looking into ways to manufacture the drug as a sublingual spray. Under Kapoor, the company donated $500,000 to the effort to defeat the measure to legalize marijuana for recreational use on Arizona’s 2016 general election ballot, paving the way for the synthetic substitute.
January 8, 2018 in Consumer Information, Crimes, Current Affairs, Dementia/Alzheimer’s, Ethical Issues, Federal Statutes/Regulations, Health Care/Long Term Care, Science, State Cases, State Statutes/Regulations | Permalink | Comments (1)
Sunday, January 7, 2018
According to the Wall Street Journal, Pfizer Inc released a public statement on Saturday, January 6, 2018, announcing the end of R & D for new drugs for treatment of Alzheimer's Disease and Parkinson's Disease. The announcement reflected cost of efforts and the lack of success, and apparently the decision will mean layoffs for some 300 employees "over several months."
The Wall Street Journal also provided context for the disheartening decision:
Like several peers, Pfizer has invested heavily in developing treatments for Alzheimer’s and Parkinson’s because of the huge need. About 5.5 million Americans have Alzheimer’s, and the numbers are expected to rise as the population ages. Analysts say successful treatments for the memory-robbing disease could have multibillion-dollar sales potential.
But promising compound have repeatedly failed to work during testing.
The most recent disappointment took place last year, when a closely watched study of a treatment from Axovant Sciences Inc. called intepirdine failed to improve memory and learning in Alzheimer’s patients.
Companies that are still looking at possible Alzheimer's treatments include AstraZeneca, Biogen Inc, and Eli Lilly & Co., according to the WSJ article.
Wednesday, December 13, 2017
Are games and food supplements that promise to stave off the onset of dementia the modern day version of "snake oil?" I promised to write more about the Aging Brain Conference at Arizona State University's Sandra Day O'Connor College of Law on December 8, 2017. Speaker Dr. Cynthia Stonnington, Mayo Clinic, offered an important look at ways in which law, ethics, medicine, and commerce can collide with her survey of a host of approaches receiving "popular" press treatment.
She examined self-described "brain-training" programs, miracle diets, supplements and targeted exercise programs, noting that most studies that purport to demonstrate positive results from these items have serious flaws. Thus, at best, programs that claim to provide "protection" against dementia are usually promising more than has been proven. Dr. Stonnington, along with the morning keynote speaker, former U.S. Surgeon General Richard Carmona, reminded us that
- maintaining social engagement,
- engaging in lifelong learning,
- getting regular exercise of any type,
- having good blood pressure control,
- getting adequate sleep, and
- focusing on good nutrition (including eating plans such as the Mediterranean, DASH or MIND diets)
are far more important than any single, magic game or exercise.
One of the most lively discussions of the day came near the end, in response to presentations by Dr. Patrica Mayer of Banner Health in Phoenix, Amy McLean of Hospice of the Valley. and Life Sciences Professor Jason Robert (ASU) speaking for himself and Susan Fitzpatrick (James S. McDonnell Foundation), about end-of-life considerations for persons with dementia or other serious illnesses. What would be the most likely response of a physician or emergency personnel confronted with a "do not resuscitate" tattoo on the chest of an emergency patient? Dr. Mayer stressed that she is seeking reliable methods of communicating end-of-life wishes, and for her that means a preference for a written, Medical Power of Attorney. She wants that "live" interaction whenever possible, in order to fully explore the options for care for individuals unable to communicate for themselves. But she also noted a frequent frustration when she contacts designated POAs about the need to make tough decisions, only to learn they were completely unaware before that moment of having been named as the designated agent.
I was part of a panel of court-connected speakers, including Arizona Superior Court Judge Jay Polk (Maricopa County), neuropsychologist (and frequent expert witness) Elizabeth Leonard, and experienced Phoenix attorney Charles Arnold. I was interested to hear about -- and will pursue more information on -- the psychologists' use of evaluative tools for clients that use scenarios that would appear to test not just for loss of memory, but impaired judgment. I was speaking on the unfortunate need for judicial inquiries into "improvident transactions" by persons with problematic cognition and I used litigation approaches from other locations -- Ireland (common law) and Maine (statutory) -- as examples. The Arizona legal experts reminded me to take a closer look at Arizona's financial exploitation laws.
For more from this conference, see Learning to Say the Word "Die" -- about a pilot program developed by Dr. Mayer while she was an advanced bioethics fellow at the Cleveland Clinic. I also recommend Dr. Mayer's article on CPR & Hospice: Incompatible Goals, Irreconcilable Differences,
December 13, 2017 in Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship, Estates and Trusts, Ethical Issues, Games, Health Care/Long Term Care, Legal Practice/Practice Management, Programs/CLEs, Science, Statistics | Permalink | Comments (0)
Tuesday, December 12, 2017
The "Aging Brain" Conference hosted by Arizona State University's Sandra Day O'Connor College of Law held on December 8, 2017 at the Sandra Day O'Connor United States Courthouse in Phoenix (that's a double helping of Sandra!) proved to be a fascinating, deep dive into the intersection of medicine, ethics and law with a focus on neurocognitive diseases, including Alzheimer's Disease. The panelists and audience included academics in a wide range of fields, plus practitioners in medicine, law, social services, and more, along with both state and federal judges. United States District Judge Roslyn Silver is a long-time supporter of law and science programming with ASU.
One of the important themes that emerged for me was the growing significance of pre-symptomatic tests that can disclose genetic markers associated with greater incidence of an eventual, active form of a degenerative brain disease. Neurologist Richard Caselli from Mayo Clinic and Jessica Langbaum, principal scientist with Banner Alzheimer's Institute laid out the latest information on a variety of genetic testing options, including the possibly mixed results for "risk" connected to positive results for specific genetic markers. A provocative question by a morning speaker, Law and Biosciences Professor Henry T. Greely at Stanford, captured the personal dilemma well, when he asked the audience to vote on how many would want to to know the results of a genetic test that could disclose such a connection, especially as there is, as yet, no known cure or even any clear way to prevent most neurocognitive diseases from taking hold.
Taking that a step further, how many of us would want our employer to know about that genetic marker results? How about our health insurers? As we discussed at the conference, some consumer information is already available through "popular" ancestry testing sites such as "23 and Me," which expressly offers testing for "genetic health risks," including "late-onset Alzheimer's Disease and Parkinson's Disease." Arizona State Law Professor Betsy Gray, director of the Law & Neuroscience Program for ASU's Center for Law, Science and Innovation, who master-minded the conference, helped to identify a host of legal and ethical issues connected to this developing world of science and medicine. Jalayne J. Arias, a full-time researcher at University of California San Francisco's Neurology, Memory and Aging Center (and clearly a rising academic star and graduate of ASU Law) outlined the implications of pre-symptomatic testing from the perspective of long-term care insurance. For more from Professor Arias, I recommend her 2015 paper for the Journal of Clinical Ethics on Stakeholders' Perspectives on Preclinical Testing for Alzheimer's Disease.
I plan to write more about this conference, as many perspectives on legal, ethical and medical questions were offered.
Wednesday, December 6, 2017
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
- 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.
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
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
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.
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.
Tuesday, October 31, 2017
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.
Monday, October 23, 2017
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.
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."
Friday, October 6, 2017
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
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).