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 prearing 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!
Wednesday, May 14, 2014
It occurs to me that what I'm about to write here is a mini-review of a mini-book. Slightly complicating this little task is the fact that I count both authors as friends and mentors.
The latest edition of Elder Law in a Nutshell by Professors Lawrence Frolik (University of Pittsburgh) and Richard Kaplan (University of Illinois) arrived on my desk earlier this month. (As Becky might remind us, both are definitely Elder Law's "rock stars.") And as with fine wine, this book, now its 6th edition, becomes more valuable with age. This is true even though achieving the right balance of simplicity and detail cannot be an easy task for authors in the intentionally brief "Nutshell" series. Presented in the book are introductions to the following core topics:
- Ethical Considerations in Dealing with Older Clients
- Health Care Decision Making
- Medicare and Medigap
- Long-Term Care Insurance
- Nursing Homes, Board and Care Homes, and Assisted Living Facilities
- Housing Alternatives & Options (including Reverse Mortgages)
- Alternatives to Guardianship (including Powers of Attorneys, Joint Accounts and Revocable Trusts)
- Social Security Benefits
- Supplemental Security Income
- Veterans' Benefits
- Pension Plans
- Age Discrimination in Employment
- Elder Abuse and Neglect
The authors describe their anticipated audience, including "lawyers and law students needing an overview of some particular subject, social workers, certain medical personnel, gerontologists, retirement planners and the like." Curiously, they don't mention potential clients, including family members of older persons. I suspect the book can and does assist prospective clients in thinking about when and why an "elder law specialist" would be an appropriate choice for consultation. This book is a very good starting place.
What's missing from the overview? Not a lot, although I find it interesting that despite solid coverage of the basics of Medicaid, and even though it is unrealistic to expect exhaustive coverage in a mini-book, the authors do not hint at the bread and butter of many elder law specialists, i.e., Medicaid Planning. Thus, there's little mention of some of the more cutting edge (and therefore potentially controversial) planning techniques used to create Medicaid eligibility for an individual's long-term care while also preserving assets that otherwise would have to be spent down.
Modern approaches, depending on the state, may range from the simple, such as permitted use of assets to purchase a better replacement auto, to more complex planning, as in states that permit purchase of spousal annuities or use of promissory notes, allow modest half-a-loaf gifting, or recognize spousal refusal. Even though the federal Deficit Reduction Act of 2005 succeeded in restricting assets transfers to non-spouse family members, families, especially if there is a community spouse, may still have viable options. Without appropriate planning the community spouse, particularly a younger spouse, may be in a tough spot if forced to spend down to the "maximum" permitted to be retained, currently less than $120,000 (in, for example, Pennsylvania). See, for example, a thoughtful discussion of planning options, written by Elder Law practitioners Julian Gray and Frank Petrich.
Perhaps the Nutshell omission is a reflection of the unease some who teach Elder Law may feel about the public impact of private Medicaid planning?
May 14, 2014 in Advance Directives/End-of-Life, Books, Cognitive Impairment, Dementia/Alzheimer’s, Discrimination, Elder Abuse/Guardianship/Conservatorship, Ethical Issues, Federal Statutes/Regulations, Health Care/Long Term Care, Housing, Medicaid, Medicare, Property Management, Social Security | Permalink | Comments (0) | TrackBack (0)
Monday, May 12, 2014
Risks of Hearing Loss in Our Aging Population
MGS and MAGEC Free Webinar
Wednesday, May 21, 2014
Noon to 1 PM CDT
Research out of Johns Hopkins Medical Center is showing a correlation between hearing loss, falls, and dementia in people over the age of 50. People in this age group who have a hearing loss, are at higher risk for falls and for dementia. And not only is the risk higher for the onset of dementia, but also for a faster decline in functioning.
This information has implications for quality of life, demand for assisted living and/or skilled nursing care, and for healthcare costs. Given these implications, are there actions that can be taken to counteract these risks?
The Minnesota Gerontological Association and the Minnesot Association for Guardiansip and Conservatorship are offering a free Webinar on” Risks of Hearing Loss in Our Aging Population.” This session will explore the research in this area and discuss some potential solutions.
Marty Barnum CSC, MA, currently works as a consultant and an interpreter. She recently spent a year with the Office of Ombudsman for Long-Term Care under a special contract to look at the needs of nursing home residents with hearing loss.
Ms. Barnum previously coordinated interpreter services for the state of Minnesota, taught at St. Catherine University, and provided advocacy services for Deaf, hard-of-hearing and deafblind people in medical and legal situations.
Note: MGS has upgraded to the "Go to Webinar" platform for this webinar. You can now listen and watch through your computer, IPad, tablet or smart phone.
Register for this free webinar
Download the flyer
MGS and MAGEC Free Webinar
Wednesday, May 21, 2014
Noon to 1 PM CDT
Thursday, May 8, 2014
Via the Alzheimer's Association:
Congress unanimously passed the bipartisan National Alzheimer’s Project Act (P.L. 111-375) in 2010. The law instructs the Department of Health and Human Services (HHS) to develop a strategic plan to address the rapidly escalating Alzheimer’s disease crisis. The annually updated National Alzheimer’s Plan must be transmitted to Congress each year and is to include outcome-driven objectives, recommendations for priority actions and coordination of all federally funded programs in Alzheimer’s disease research, care and services. The plan also includes the goal of effectively treating and preventing Alzheimer’s by 2025.
The one missing piece in this plan is a projection of the level of funding necessary to reach the critical goal of effectively treating and preventing Alzheimer’s by 2025. The Alzheimer’s Accountability Act represents a bipartisan effort to ensure that Congress is equipped with the best possible information to set funding priorities and reach the goal of the National Plan to Address Alzheimer’s Disease - effectively preventing and treating Alzheimer’s by 2025.
Wednesday, May 7, 2014
Via the BBC:
Businesses must become more dementia-friendly and support employees who care for loved ones with dementia, the British government says. With dementia affecting nearly 700,000 people in England alone, thousands of working friends and relatives end up taking on the role of carer. In 2014, 50,000 carers will have quit their job and 66,000 more will have to make adjustments at work, says Public Health England. It is launching an awareness campaign. The Dementia Friends initiative aims to show it will take a whole-society response to enable people with the condition to live well. To become a friend, individuals watch a short online film, which explains what dementia is, how it affects individuals and what people can do to help those living with the disease.
The average person diagnosed with dementia has been in their current job for at least nine years. Inevitably, many individuals affected while still working will have to take early retirement at some point. However, with support from employers, they may be able to keep working for longer, says the Alzheimer's Society.
Wednesday, April 30, 2014
Another book recommendation, courtesy of my Penn State colleague, neuropsychologist Claire Flaherty. The book is "The Banana Lady and Other Stories of Curious Behavior and Speech," by Andrew Kurtisz and first published in 2006. Professor Flaherty accompanied this recommendation with the note that the book presents "truth is stranger than fiction" tales of changes in personality, behaviors and relationships, including the gradual loss of language that can occur even in one's "middle" ages.
The author's bio is also interesting:
Dr. Andrew Kertesz is professor of Neurology in the Department of Clinical Neurological Sciences at the University of Western Ontario. He is Director of Cognitive Neurology and Alzheimer's Research Centre at St. Joseph's Health Care London and former Chief of the Department of Neurology. He graduated from Queen's University in Kingston, Ontario, studied neurology in Toronto, and behavioral neurology in Boston. His publications deal with the classification, localization and recovery in aphasia, as well as alexia, apraxia, visual agnosia and dementia. His books include Aphasia and Associated Disorders by Grune and Stratton (1979), Localization and Neuroimaging in Neuropsychology by Academic press (1994), and his most recent book, co-authored by Dr. David Munoz, is entitled, Pick's Disease and Pick Complex by Wiley-Liss Inc. (1998). Recent research projects are the experimental treatment of Alzheimer's disease, mild cognitive impairment, vascular dementia, primary progressive aphasia, and frontotemoral dementia. He has standardized a Frontal Behavioral Inventory for the diagnosis of Frontotemporal dementia and is active in clinical trials.
Thanks, Claire, for helping to keep our summer reading lists well filled.