Sunday, September 21, 2014
A more positive way perhaps to word the question might be "how old do you want to live to be?" The Atlantic ran an article that phrased it a bit differently, but still focused on at what age is long lived enough? The author, Ezekiel Emanuel, serves as Director, Clinical Bioethics Department, National Institutes of Health & chairs U. of Pa. Department of Medical Ethics & Health Policy. Why I Hope to Die at 75 appeared in the September 17, 2014 issue. Dr. Emanuel writes about his decision that 75 is his "magic number" and how others have tried to convince him that he should change his mind on this. Why 75? He explains
By the time I reach 75, I will have lived a complete life. I will have loved and been loved. My children will be grown and in the midst of their own rich lives. I will have seen my grandchildren born and beginning their lives. I will have pursued my life’s projects and made whatever contributions, important or not, I am going to make. And hopefully, I will not have too many mental and physical limitations. Dying at 75 will not be a tragedy. Indeed, I plan to have my memorial service before I die. And I don’t want any crying or wailing, but a warm gathering filled with fun reminiscences, stories of my awkwardness, and celebrations of a good life. After I die, my survivors can have their own memorial service if they want—that is not my business.
He makes it clear that he is not supporting physician-aided dying and if he lives past 75, so be it-he's not going to take steps to end his life. Where his wish comes into play is the type of health care he will consent to receiving once he hits that age. He argues that more years don't necessarily mean good years, noting that seventy is NOT the "new fifty". Although older folks may be more active or in better health, there is still a rise in disability which he points to as a reason that the focus shouldn't just be on quantity. He quotes another expert, "health care hasn’t slowed the aging process so much as it has slowed the dying process." The fact of living longer but more incapacitated holds no appeal for him.
Dr. Emanuel looks at examples of health care issues, such as stroke and dementia, using statistics and real stories to illustrate his point. Regarding Alzheimer's, after citing to statistics on the correlation between aging and dementia, he offers
[e]ven if we aren’t demented, our mental functioning deteriorates as we grow older. Age-associated declines in mental-processing speed, working and long-term memory, and problem-solving are well established. Conversely, distractibility increases. We cannot focus and stay with a project as well as we could when we were young. As we move slower with age, we also think slower.
He also discusses the correlation between age and creativity-an inverse relationship it seems--the older you are, the less creative, unless you are one of those rare individuals (we all know of someone quite famous who did something remarkably creative at an advanced age---think Grandma Moses).
As we age, to accommodate our "current selves" we constrict how we live, and as Dr. Emanuel describes, we find ourselves "aspiring to and doing less and less". Yet we each enjoy different things. This calls to mind some of the arguments we hear about the use of substituted judgment in health care/end of life decision-making. We each define a quality of life in different ways, and Dr. Emanuel recognizes that his view may be a bit harsh.
Yet, he contends, it is not about the elder individual racking up the years. There is a burden on the family to be considered, and he says "I will leave aside the very real and oppressive financial and caregiving burdens that many, if not most, adults in the so-called sandwich generation are now experiencing, caught between the care of children and parents. Our living too long places real emotional weights on our progeny."
Back to his plan when he reaches 75. As far as health care, here is his plan: to "stop getting any regular preventive tests, screenings, or interventions ... [and] accept only palliative—not curative—treatments if ... suffering pain or other disability." He makes it clear that this is his view and he respects the views of others that are contrary to his.
This article provides a wealth of topics for discussions with our students and is worthwhile reading, even though you may hold a contrary view to Dr. Emanuel.
Thursday, September 18, 2014
The Institute of Medicine of the National Academies has released a new report on end of life issues. The report, Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life was released on September 17, 2014. The report brief offers an explanation of the importance of this new survey, including the sheer numbers of American elders who are living with some limitations on ADLs, chronic illness, cognitive issues and more. As well the report points to issues with the health care system, including problems in accessing care, a lack of palliative care specialists and knowledge about end of life care, and a health care system that works out of sync, with economic incentives. The brief concludes with a call for "person-centered, family-oriented approach that honors individual preferences and promotes quality of life through the end of life [as] ... a national priority." The report is "a comprehensive assessment of the knowledge gaps, structural problems, and financial disincentives that hamper delivery of optimal care and makes cross-sectoral recommendations to achieve compassionate, affordable, sustainable, and effective care for all Americans."
The website also includes a link to key findings, core components, an infographic and a quiz (5 questions) which is suitable for use in class.
Monday, September 8, 2014
Have you ever considered the similarities between caregiving and improv? Probably not--who would-they certainly seem to be quite dissimilar occupations. Yet when you think about their characteristics, they are quite similar. The website, In the Moment, which is focused on "creative ideas for training staff" lists on the landing page characteristics that apply to both, including being flexible, adaptable, courageous, spontaneous, generous, selfless and trusting.
and within twenty four hours ... was on a plane flying to be with ... family and wait for ... Dad to pass away. During that time of sitting, laughing, thinking, crying and rambling -[she]...realized that the world of Improvisation was very similar to the world of caregiving and Alzheimer's disease and dementia.... [unsure] why the idea hit ... then, maybe it was divine inspiration, maybe someone was telling [her] the reason why [her] ... Dad had Alzheimer's or maybe [she] ...was sleep deprived. Probably all of the above... [Having]... attended a lot of very informative and well executed workshops and trainings... [yet] not a very good learner... [she] remember[s] sitting in a class and listening to the instructor talking about effective communication with persons with dementia."
Then inspiration struck, as she says in her own words "[a]ll I could think of was how tired I was of sitting . If she would just do this improv exercise it would illustrate her point more clearly and get everyone up and moving. Hmmmm...." She wrote grant applications, with this excerpt from her abstract, explaining the parallels
The rules of Improvisation parallel the “ rules “ of Caregiving for a person with Alzheimer’s. Each rule of Improv has exercises, hands on techniques to illustrate points of care. Improv itself teaches characteristics that are essential to the caregiver : listening, validation, accepting others’ realities, problem solving and creativity to name only a few. I see improvisation as another tool for caregivers and for trainers to use to create a better quality of life for each person with Alzheimer’s. I want to clarify that this this is not training of how to do Improvisation. But training that uses Improvisation to teach Alzheimer care.
The "rules" she references can be accessed here. The website also provides information about the 6 week training program, training tips, and other resources. Ultimately, the goal of this project is to "[e]Employ ... theater games with creativity exercises ... [to] provide caregivers with the methods to become better at what they do."
Live in the moment--and enjoy that moment with a family member who has dementia---very good advice indeed.
Friday, September 5, 2014
We have several posts about the use of technology in caregiving. I cover it in my classes (do you?) and in particular, I want my students to think about consent, privacy and autonomy. Several years ago, there were stories about PARO, a therapeutic interactive robot designed to resemble a baby harp seal, and its use with certain individuals, including those residing in nursing homes. (The company website has quite a bit of information about PARO, including research papers.) There are lots of different types of technologies available, whether assistive or monitoring.
A recent article in the San Jose Mercury News (and picked up by my local paper, the Tampa Bay Times) Meet Paro, a robot designed to help the elderly, reports on the results from using Paro in a local retirement community. This article looks at the issues of ethics as well as how the use of such "socially assistive" robots results in less isolation for some residents. The story highlights the interactions of some residents with the robot. The article also reviews the debate regarding using such robots. For example, Sherry Turkle, an MIT social scientist is quoted in the article offering a concern that
"faux relationships" with machines may detract from human connections..."It's not just that older people are supposed to be talking. Younger people are supposed to be listening... [and] ... [w]e are showing very little interest in what our elders have to say." Robots like Paro may offer comfort to isolated seniors, Turkle has written, but it could "make us less likely to look for other solutions for their care."
Another expert, Professor Maja Mataric, offers a counter-view, that such robots provide both "valuable reinforcement and motivation" and notes that
While robots aren't a complete substitute for human interaction, she stressed, they may play a vital role since "there just simply aren't enough people to take care of our very large and growing elderly population." ... [and] added: "We need to think about the humane and ethical use of technology, because these things are coming."
I think this is a great topic for discussion with students. Let me know what you think.
Thursday, September 4, 2014
George Washington Law Professor Naomi Cahn alerted us to the Washington Post coverage on new research analyzing causation factors to explain why 2/3 of all persons with Alzheimer's Disease are women. Lots of opportunities here for important classroom discussions:
"It has long been known that more women than men get the deadly neurodegenerative disease, and an emerging body of research is challenging the common wisdom as to why. Although the question is by no means settled, recent findings suggest that biological, genetic and even cultural influences may play heavy roles.....
Because advancing age is considered the biggest risk factor for the disease, researchers largely have attributed that disparity to women’s longer life spans. The average life expectancy for women is 81 years, compared with 76 for men. Yet 'even after taking age into account, women are more at risk,' said Richard Lipton, a physician who heads the Einstein Aging Study at Albert Einstein College of Medicine in New York.
The area of inquiry has been growing in part because of a push by female Alzheimer’s researchers, who have formed a group to advocate for a larger leadership role in the field and more gender-specific research. 'Scientific workforce diversity is very important because it’s much more likely to shape the research agenda,' said Hannah Valantine, the chief officer for scientific workforce diversity at the National Institutes of Health and a professor at Stanford University’s medical school.
Running counter to the longevity argument, Lipton’s research suggests that women who are 70 to 79 years old are twice as likely as men the same age to develop Alzheimer’s or other forms of dementia. After 80, the risk is identical and remains similar throughout the rest of life, Lipton said."
For more on emerging issues and indictors, see "Why Do More Women Get Alzheimer's?" by Frederick Kunkle. Thanks, Naomi!
Monday, September 1, 2014
Washington Post writer Frederick Kunkle profiles Meryl Comer, author of "Slow Dancing With a Stranger," a new book that "offers an unflinching and intimate account about what it means to surrender one's career to care" for a loved one stricken with Alzhemier's. In describing the author and her book, he writes:
"Its a a love stsory without a happy ending, because the ending for Alzheimer's patients can seem more like endless twilight. And it's a call to arms for caregivers such as Comer....
When Alzhemier's took hold, [her husband, chief of hematology and oncology at NIH, Harvey Gralnick] was a fit 56-year-old -- he ran six miles a day -- who dressed impeccably wearing the latest fashions beneath his lab coat.... For a time, he was able to mask his symptoms behind his reputation as a brilliant if eccentric scientist....
As his condition worsened, Comer, too, gave up her career -- and she adds with a note of bitterness, her 'prime.' In her blunt-talking manner, she acknowledged that she did so not entirely out of devotion but because doctors told her more than once, wrongly, that the progress of her husband's disease would not be long.
Finances, too, were a factor. It was almost impossible to find care that she felt would be satisfactory for her husband and yet affordable. Her burden intensified even further when her mother, too, developed Alzheimer's; her mother now shares the same home with Comer and her husband."
The book is meant to make people mad -- and more realistic and focused -- about the need for solutions. The article quotes George Vradenburg, a co-founder with Comer of the nonprofit group USAgainstAlzheimer's, who hopes that Comer's book will stir conversations about a disease many prefer not to think about. "I hope America gets mad," Vradenburg is quoted as saying.
For more, see "Alzheimer's -- Thief and Killer," in the Washington Post.
Friday, August 29, 2014
Glen Campbell was diagnosed with Alzhemier's disease in 2011, and with his wife, he bravely told the public. What happened next -- on his "Goodbye Tour"-- has been turned into a vivid, moving film. The trailer of "Glen Campbell ... I'll Be Me" is now available, in advance of the official October 2014 release of the film.
Thursday, August 28, 2014
Here's another great educational video suggestion from John Marshall Law School's Barry Kozak.
Unfortunately, this video is in a format that I cannot show directly here. Nonetheless, I'm recommending it too, and providing the link. Alanna Shaikh's "How I'm Preparing to Get Alzheimer's" is provocative, with great dashes of wry humor. She uses her father's twelve year history of dementia as incentive to prepare herself for getting dementia. Alanna rejects "denial" and she's realistic about the likelihood of "prevention or cure" in her lifetime. She talks about preparing for the "Alzheimer's Monster."
Listen to her practical steps to prepare. What do you think of them? Realistic? What I appreciate is her focus on working harder to become a better person now, in hope of carrying forward that quality as a deeply engrained personality trait. She's echoing my own belief, based on observation, that "personality" tends to concentrate over time, with the strongest held traits lasting the longest -- whether for good or ill effect. Once the rational mind is no longer in control, those essential traits do seem to dominate.
Sunday, August 24, 2014
We've reported several times, including here and here, on recent academic and professional publications that address the sensitive topic of "consent" to sexual relations for individuals residing in nursing homes.
The Huffington Post and other media reports now bring the topic into the general public realm with coverage of a complicated case emerging in Iowa, where a husband has been arrested on charges connected to sexual relations with his wife, a resident with Alzheimer's, in her nursing home room.
Two items that may be critical to the outcome of the case: Alleged "notice" to the husband by the facility that his wife was no longer legally able to give consent to sexual relations, and the identity of the husband as a public figure. The fact that the husband is a state legislator is a reason why the case may get wide news coverage. But that wider coverage could also generate important discussion and debate about the deeper legal, personal and public issues. From one article:
"An Iowa legislator who allegedly had sex with his mentally incapacitated late wife has been charged with sexual abuse. Henry Rayhons, 78, a Republican state representative from Iowa House District 8, was told by medical staff on May 15 that his wife, 78-year-old Donna Rayhons, no longer had the mental ability to consent to sexual activity, according to a criminal complaint obtained by WHO-TV. Donna Rayhons, who suffered from Alzheimer's disease, had been living in Concord Care Center in Garner, Iowa, since March, according to the Des Moines Register....
In an interview with law enforcement in June,Rayhons allegedly confessed to 'having sexual contact' with his wife, according to KCCI. He also allegedly admitted that he had a copy of the document that stated his wife did not have the cognitive ability to give consent. Rayhons was charged with third-degree sexual abuse on Friday.
Elizabeth Barnhill, executive director of the Iowa Coalition Against Sexual Assault, told the Des Moines Register that even though spousal rape has been illegal in Iowa for about 25 years, arrests for the crime are rare and 'convictions are even rarer.' Barnhill also noted that sexual assault between spouses is not considered a 'forcible felony' in Iowa."
According to new sources, the family has also made a statement.
August 24, 2014 in Cognitive Impairment, Crimes, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship, Ethical Issues, State Cases, State Statutes/Regulations | Permalink | Comments (0) | TrackBack (0)
Sunday, August 17, 2014
The Washington Post ran a fascinating article on a particular Medicare scam. A Medicare Scam That Just Kept Rolling was published August 16, 2014 and focuses on power wheelchairs. The article offers a detailed look at how this particular scam worked.
The wheelchair scam was designed to exploit blind spots in Medicare, which often pays insurance claims without checking them first. Criminals disguised themselves as medical-supply companies. They ginned up bogus bills, saying they’d provided expensive wheelchairs to Medicare patients — who, in reality, didn’t need wheelchairs at all. Then the scammers asked Medicare to pay them back, so they could pocket the huge markup that the government paid on each chair.
This eye-opening article points out that the depth and breadth of the scam remains largely unknown, but is on its way out.
But, while it lasted, the scam illuminated a critical failure point in the federal bureaucracy: Medicare’s weak defenses against fraud. The government knew how the wheelchair scheme worked in 1998. But it wasn’t until 15 years later that officials finally did enough to significantly curb the practice.
The article is accompanied by a video that shows in "four easy steps" how to perpetrate a Medicare scam as well as a sidebar with slides showing how the power wheelchair scam works. Variations of the scam are more than 40 years old and have morphed with the times.
If you aren't shaking your head in wonder now, consider why these scams can happen:
[F]or Medicare officials at headquarters, seeing the problem and stopping it were two different things.
That’s because Medicare is an enormous system, doing one of the most difficult jobs in the federal government. It receives about 4.9 million claims per day, each of them reflecting the nuances of a particular patient’s condition and particular doctor’s treatment decisions.
By law, Medicare must pay most of those claims within 30 days. In that short window, it is supposed to filter out the frauds, finding bills where the diagnosis or the prescription seem bogus.
The way the system copes is with a procedure called “pay and chase.” Only a small fraction of claims 3 percent or less — are reviewed by a live person before they are paid. The rest are reviewed only after the money is spent. If at all.
The whole thing is set up as a kind of honor system, built at the heart of a system so rich that it made it easy for people to be dishonorable.
The article talks about comparisons--the amount of money spent on power wheelchairs as compared to the total amount of dollars spent in the Medicare universe and although the amount spent on wheelchairs is a lot, it's a small amount in that universe. The article mentions the steps the government has taken to end the motorized wheelchair scam such as competitive bidding and rent-to-own. So if the wheelchair scam is on the decline, what's the next one? According to the article, orthotics and prosthetics. Stay tuned...
Thursday, August 14, 2014
The journal Health Affairs is seeking articles on older adults, and specifically regarding the care and management of multiple chronic conditions among this population. We are interested in work that spans the full range of care settings, including primary care and specialty practices, hospitals, nursing homes and other long-term care settings. We are grateful to The John A. Hartford Foundation for providing support for our ongoing coverage of these topics. There is no deadline for submissions; papers on these topics will be considered on an ongoing basis and considered for publication through 2015. For more information, contact Health Affairs executive editor, Don Metz: firstname.lastname@example.org.
Monday, August 11, 2014
A New York teenager whose grandfather suffers from Alzheimer's disease won a $50,000 science prize for developing wearable sensors that send mobile alerts when a dementia patient begins to wander away from bed, officials said on Wednesday. Kenneth Shinozuka, 15, who took home the Scientific American Science in Action Award, said his invention was inspired by his grandfather's symptoms, which frequently caused him to wander from bed in the middle of the night and hurt himself. "I will never forget how deeply moved my entire family was when they first witnessed my sensor detecting Grandfather's wandering," Shinozuka said in a statement. "At that moment, I was struck by the power of technology to change lives." His invention uses coin-sized wireless sensors that are worn on the feet of a potential wanderer. The sensors detect pressure caused when the person stands up, triggering an audible alert on a caregiver's smartphone using an app.
The award honors a project that aims to make a practical difference by addressing an environmental, health or resources challenge, said Scientific American Editor in Chief Mariette DiChristina.
Read more at Reuters.
Thursday, August 7, 2014
Tuesday, August 5, 2014
The Law and Ethics of Dementia, co-edited by Israel Doron, Charles Foster and Jonathan Herring, recently released in hardback by Hart Publishing and available for e-readers in September, is definitely on my "must read" list. Followers of this Blog will certainly recognize Issi Doron, from the University of Haifa, who has long exercised an international, comparative perspective on issues in ageing. Professor Foster is a practicing barrister and a fellow at Green Templeton College, University of Oxford, which is also the working home of prolific writer and Law Professor Herring.
The book is organized into five parts, Medical Fundamentals, Ethical Perspectives, Legal Perspectives, Social Aspects, and Patient and Carer Perspectives. As part of the first section, physicians and researchers Amos Korczyn and Veronika Vakhapova co-author "Can Dementia be Prevented?" a question we all hope will be answered in the affirmative. Not surprisingly, given the title of the book, the section on ethical perspectives promises to be especially fascinating, offering multiple views on ethical components of decision making and care. To suggest the scope, Andrew McGee's chapter is on "Best Interest Determinations and Substituted Judgement," while Leah Rand and Mark Sheehan tackle the challenge of "Resource Allocation Issues in Dementia."
In the Social Aspects section, I notice that Syracuse Law Professor Nina Kohn has a chapter on "Voting and Political Participation," while Chinese (and University of Pennsylvania) health care scholar Ruijia Chen and colleagues address "Physical, Financial and Other Abuse."
With more than forty individual chapters and dozens of international writers, this book promises to be a key guide for the future.
Friday, August 1, 2014
I have great respect for individuals who publicly disclose their diagnosis of Alzheimer's Disease or other serious, progressive conditions. The Denver Bronco's owner Pat Bowlen, frequently described as one of the "most iconic owners in NFL history," recently disclosed that his decision to step down completely at age 70 was connected to his struggles with Alzheimer's. According to the Denver Post, "Bowlen had first revealed to [the newspaper] in May 2009 that he was experiencing short-term memory loss."
News reports on Bowlen also demonstrate the importance of succession planning tools such as "trusts" to manage assets, particularly when there is a goal or plan for continued family involvement.
Wednesday, July 16, 2014
From McKnight's comes this interesting report on new statistical information on Alzheimer's:
"The odds of developing Alzheimer's disease fell sharply among seniors in the United States over the last 30 years, according to research presented Tuesday at the Alzheimer's Association International Conference in Copenhagen. The finding casts a new light on prior estimates that the number of people needing long-term care will triple by 2050, largely due to Alzheimer's."
For a more complete report on the Conference, see McKnight's piece "Chance of a senior developing Alzheimer's has dropped 44% over the last three decades, large U.S. study shows."
Wednesday, July 2, 2014
The Administration for Community Living, Centers for Disease Control and Prevention, and the National Institute on Aging are collaborating to host a webinar series to increase knowledge about Alzheimer’s disease and related dementias, and resources that professionals in the public health, aging services, and research networks can use to inform, educate, and empower community members, people with dementia, and their family caregivers.
You can register for all the webinars or just the one that most interests you. You must register separately for each webinar. If you plan to view the webinar in a central location with others, we encourage only one person to register for the group.
Each webinar is from 1:30 p.m.–3:00 p.m. ET/12:30 p.m.–2:00 p.m. CT/ 11:30 a.m.–1:00 p.m. MT/10:30 a.m.–12:00 p.m. PT. The schedule is as follows:
Tuesday, July 22, 2014: Updates on Alzheimer’s Disease and Related Dementias Resources
Thursday, August 28, 2014: Community Collaborations for Assisting People with Alzheimer’s and Dementias: The Steps to Success
Thursday, September 25, 2014: Alzheimer’s Research Updates
Click here for additional information on the series and each webinar session.
Wednesday, June 18, 2014
"It’s hard to believe that 40 years ago it was proposed that Alzheimer disease (AD) is caused by brain aluminum. Some people even threw out their cookware, in fear of acquiring the memory-impairing disease. The aluminum hypothesis has long since been discounted, and research has marched forward: β-amyloid (Aβ) protein was identified in 1984 in brain plaques of patients with AD, and hyperphosphorylated τ protein was identified in 1986. These are true AD markers; possible culprits behind neuronal death and memory impairment....
In the trenches of Alzheimer research, the battle continues . . . but where do we stand? Is the war on AD dementia nearing conclusion, or are we simply in the initial throes of the fight? In interviews with Psychiatric Times, 3 AD experts, Murali Doraiswamy, MD, of Duke Medicine; James Lah, MD, PhD, of Emory University; and Dagmar Ringe, PhD, of Brandeis University weighed in on this important topic."
To read the full article, you can register with the publication on-line, free of charge.
Sunday, June 8, 2014
During an upcoming television broadcast of CBS Sunday Morning on June 15, popular model, restaurant owner and chef B. Smith will talk about her diagnosis -- and early attempts to hide -- her Alzheimer's disease. Even now she is just age 64. Based on a clip from the program, it appears that the discussion of the medical facts behind this illness will be frank and educational.
Thursday, May 29, 2014
Asst. Sec. on Aging Kathy Greenlee helped to kick off the 3d World Congress on Adult Guardianship with truly one of the most powerful speeches on valuing our seniors that I have ever heard. Greenlee spoke of the danger of trivializing the lives of the elderly, especially those with advanced dementia, reminding us that the loss of memory does not equal the loss of self. I wish I had recorded her speech, but thankfully, it will be published later this year in Stetson's Journal of International Law & Aging Policy. Stay tuned for more reports on the Congress from your intrepid reporters, Kim Dayton and Becky Morgan!