Friday, March 17, 2017
I've blogged a couple of times recently about the fight against Alzheimer's disease. Here's a recent story about research efforts stymied by federal law. Big Alzheimer's research roadblock: Federal government was published by CNBC on March 9, 2017. "Promising new research conducted last year at the Salk Institute for Biological Studies has shown that marijuana extracts may hold a key to treating Alzheimer's disease. The next step: To conduct tests on mice and, if the results are promising, move on to human trials. But Salk Institute researchers have run into a major hurdle, and not a scientific one: the federal government. The Salk Institute is based in La Jolla, California — a state that legalized marijuana last November — but it is a federally funded research institute."
The story reminds us that although marijuana use may be legal in several states, it's still not ok at the federal level-it's still a controlled substance. And when a research institute like Salk gets federal dollars for research, there's a problem.
So does this mean a dead end for marijuana/Alzheimer's research? Not necessarily. There is a path, but it won't be a quick or guaranteed one. "In order to acquire marijuana for further studies, the lab must first apply to the Drug Enforcement Agency, which carries out the application process jointly with the U.S. Department of Health and Human Services. The Salk researchers sent in their application in December...." It takes several months for such a request to be approved. The article discusses the costs of Alzheimer's disease (which we have written about in prior posts)
The cost to the economy of caring for Alzheimer's and dementia patients was estimated to be about $236 billion in 2016. In 2015 a study funded by the National Institutes of Health estimated that the costs associated with late-stage dementia are greater than for any other disease.
During the last five years of a person with dementia's life, total health-care spending was more than a quarter of a million dollars per person ($287,038), about 57 percent greater than costs associated with death from other diseases, including cancer ($173,383) and heart disease ($175,136).
We all know how important it is to find an effective treatment (or even cure?) for Alzheimer's. For now, the folks at Salk have to wait to hear if they can move forward.
BTW, those astute readers will notice the url for the story includes the phrase "major buzz kill." To follow up, I'll close now with some my own pithy phrase, "dude, serious bummer". You insert your own pithy phrase here.....
Wednesday, March 15, 2017
Yesterday I blogged about the 2017 Alzheimer's Disease Facts & Figures. An article in Huffington Post focused on the impact on Medicare as the Boomers move into that age group where Alzheimer's risk increases. Rising Numbers Of Alzheimer’s Patients Could Bankrupt Medicare offers that
This year, for the first time, total costs related to caring for patients with Alzheimer’s will surpass a quarter of a trillion dollars, according to the Alzheimer’s Association annual report, released Wednesday.
With roughly 75 million boomers only beginning to reach the age of greatest risk for the disease, the U.S. may be disturbingly close to the tipping point for runaway Alzheimer’s-related health care costs. The 88-page report lays out some sobering statistics, including the possible bankruptcy of Medicare.
The article covers dual eligible, the need for funding and research, and some of the proposals from Congress. "Simply put, Alzheimer’s is a public health crisis. Yet due to the social stigma surrounding dementia, its full dimensions are still cloaked in shadow. Combating the disease is going to require that politicians and members of the public speak out and demand real solutions."
Tuesday, March 14, 2017
That is, the term “Alzheimer’s disease” is now used only in those instances that refer to the underlying disease and/or the entire continuum of the disease. The term “Alzheimer’s dementia” is used to describe those in the dementia stage of the continuum. Thus, in most instances where past editions of the report used “Alzheimer’s disease,” the current edition now uses “Alzheimer’s dementia.” The data examined are the same and are comparable across years — only the way of describing the affected population has changed. For example, 2016 Alzheimer’s Disease Facts and Figures reported that 5.4 million individuals in the United States had “Alzheimer’s disease.” The 2017 edition reports that 5.5 million individuals have “Alzheimer’s dementia.” These prevalence estimates are comparable: they both identify the number of individuals who are in the dementia stage of Alzheimer’s disease. The only thing that has changed is the term used to describe their condition.
The report contains a lot of good information that would help our students understand dementia and Alzheimer's. The section on prevalence is sobering. For example, "[a]n estimated 5.5 million Americans of all ages are living with Alzheimer’s dementia in 2017. This number includes an estimated 5.3 million people age 65 and older, and approximately 200,000 individuals under age 65 who have younger-onset Alzheimer’s, though there is greater uncertainty about the younger-onset estimate." (citations omitted). The report also explores the gender, ethnic and racial factors regarding prevalence of Alzheimer's. The report gives a breakdown by state. There is an amazing amount of critical information in this report. The report also includes a special report, Alzheimer's Disease: The Next Frontier.
I'm going to make it assigned reading to my students. Be sure to read this. It's important.
Monday, March 13, 2017
We don't know what the future holds for us, especially in our final years, but we can bet that we may be faced with some health care issues. Wouldn't it be great to have a guidebook for the final years? Well now you can. According to an article in Kaiser Health News, A Playbook For Managing Problems In The Last Chapter Of Your Life, there is "a unique website, www.planyourlifespan.org, which helps older adults plan for predictable problems during what Lindquist calls the “last quarter of life” — roughly, from age 75 on...“Many people plan for retirement,” the energetic physician explained in her office close to Lake Michigan. “They complete a will, assign powers of attorney, pick out a funeral home, and they think they’re done.”...What doesn’t get addressed is how older adults will continue living at home if health-related concerns compromise their independence." The focus isn't on end of life planning, according to the article, it's the time before. "Investigators wanted to know which events might make it difficult for people to remain at home. Seniors named five: being hospitalized, falling, developing dementia, having a spouse fall ill or die, and not being able to keep up their homes."
The result of the work is an interactive website that deals with issues such as falls, hospitalization, dementia, finances and conversations. The website offers that "Plan Your Lifespan will help you learn valuable information and provide you with an easy-to-use tool that you can fill in with your plans, make updates as needed, and easily share it with family and friends." Try it!
Friday, March 10, 2017
We all want a cure for Alzheimer's no question. If not a cure, then a way to prevent it. I blogged twice this week about Alzheimer's so I wanted to add one more story. Newsweek 's cover story for February 24, 2017 focused on prevention of Alzheimer's: The New Offensive on Alzheimer’s Disease: Stop it Before it Starts. The story opens with the news last year that an experimental drug failed to make much of an impact on those in the early stages of the disease. The story focuses on prevention:
This aggressive attempt to prevent Alzheimer’s rather than treating it is the most exciting new development in decades, as well as a radical departure for researchers and the pharmaceutical industry. Traditionally, drug companies have tested their therapies on patients who already have memory loss, trouble thinking and other signs of dementia. It’s been a losing tactic: More than 99 percent of all Alzheimer’s drugs have failed tests in the clinic, and the few that have made it to the market only ameliorate some symptoms. Not a single medicine has been shown to slow the relentless progression of the disease.
But with this new approach, even partial success—an appreciable slowing of brain degeneration—could have a big impact, says Dr. Reisa Sperling, a neurologist who directs the Center for Alzheimer’s Research and Treatment at Boston’s Brigham and Women’s Hospital. If a drug therapy can push back the onslaught of dementia by five or 10 years, she says, “many more people would die of ballroom dancing instead of in nursing homes.”
There are several ongoing clinical trials focusing on prevention, according to the article. There are also new tools to diagnosis Alzheimer's (where in the past, a brain autopsy was needed), We need to hope for a success, because otherwise, as the article points out, the numbers are very very bad:
The consequences of failure could be dire. Approximately 5.4 million Americans suffer from Alzheimer’s, and if no disease-delaying therapies are found soon, that number is expected to nearly triple by 2050, at which point the cost of treating and caring for all those people could top $2 trillion per year, after adjusting for inflation. That’s up from $236 billion today. O ne in every five Medicare dollars is now spent on people with Alzheimer's and other dementias. In 2050, it will be one in every three dollars. And those figures don’t even include the hundreds of billions more in lost wages for family members who take time away from their jobs to care for loved ones. It’s not a question of a day off now and again. People with Alzheimer’s require around-the-clock care—and more than one-third of all dementia caregivers develop clinical depression.
The article also discusses the costs and coverage of any medication that proves successful in preventing Alzheimer's. Stay tuned.
Tuesday, March 7, 2017
From the Washington Post, an especially moving account written by former White House Communications Director Jennifer Palmieri about her sister, who died at age 58 following some ten years with "early onset" Alzheimer's:
Every day, more Americans receive the devastating news that someone in their family has this affliction. For now, there is not a lot of hope for recovery. It can make you envious of cancer patients; their families get to have hope. Having come through this experience with my sister, I am afraid that I can’t offer these new Alzheimer’s families hope for a recovery. But I do hope that by relaying the story of my sister’s journey, I can offer them some peace.
My sister Dana was brilliant, beautiful, full of positive energy, a force of nature. She was not an easy person. She was driven and successful, and, as the disease progressed unbeknown to all of us, it became harder to connect with her. Ironically, that began to change once she got the diagnosis.
When she called each of us with the news, she already had it all figured out. We were all to understand that, really, she saw the diagnosis as a blessing. It was going to allow her to retire early. It would motivate our family to spend time together we would not have otherwise done. It would shorten her life, but she would make sure the days she had left were of the highest quality.
The thoughtful piece can help all of us as we and our family members tackle challenges. For more, read The Blessings Inside my Sister's Alzheimer's Disease.
Tuesday, February 28, 2017
Paula Span, the thoughtful columnist on aging issues from the New York Times, offers "Gorsuch Staunchly Opposes "Aid-in-Dying." Does It Matter?" The article suggests that the "real" battle over aid-in-dying will be in state courts, not the Supreme Court.
I'm in the middle of reading Judge Gorsuch's 2006 book, The Future of Assisted Suicide and Euthanasia. There are many things to say about this book, not the least of which is the impressive display of the Judge's careful sorting of facts, legal history and legal theory to analyze the various advocacy approaches to end-of-life decisions, with or without the assistance of third-parties.
With respect to what might reach the Supreme Court Court, he writes (at page 220 of the paperback edition):
The [Supreme Court's] preference for state legislative experimentation in Gonzales [v. Oregon] seems, at the end of the day, to leave the state of the assisted suicide debate more or less where the Court found it, with the states free to resolve the question for themselves. Even so, it raises interesting questions for at least two future sorts of cases one might expect to emerge in the not-too-distant future. The first sort of cases are "as applied" challenges asserting a constitutional right to assist suicide or euthanasia limited to some particular group, such as the terminally ill or perhaps those suffering grave physical (or maybe even psychological) pain....
The second sort of cases involve those like Lee v. Oregon..., asserting that laws allowing assisted suicide violate the equal protection guarantee...."
While most of the book is a meticulous analysis of law and policy, in the end he also seems to signal a personal concern, writing "Is it possible that the Journal of Clinical Oncology study is right and the impulse for assistance in suicide, like the impulse for old-fashioned suicide, might more often than not be the result of an often readily treatable condition?"
My thanks to New York attorney, now Florida resident, Karen Miller for pointing us to the NYT article.
February 28, 2017 in Advance Directives/End-of-Life, Consumer Information, Crimes, Dementia/Alzheimer’s, Discrimination, Elder Abuse/Guardianship/Conservatorship, Ethical Issues, Federal Cases, Health Care/Long Term Care, Religion, Science, State Cases, State Statutes/Regulations | Permalink | Comments (0)
Sunday, February 19, 2017
Kaiser Health News ran a story recently about the increase in Alzheimer's cases amongst Latinos. 'Tsunami’ Of Alzheimer’s Cases Among Latinos Raises Concerns Over Costs, Caregiving citing to a recent report explains
Across the United States, stories [of people with Alzheimer's] are becoming more common, particularly among Latinos — the fastest growing minority in the country.
With no cure in sight, the number of U.S. Latinos with Alzheimer’s is expected rise by more than eight times by 2060, to 3.5 million, according to a report by the USC Edward R. Roybal Institute on Aging and the Latinos Against Alzheimer’s network.
Advanced age is the leading risk factor for Alzheimer’s disease and the likelihood of developing Alzheimer’s doubles about every five years after age 65. As a group, Latinos are at least 50 percent more likely than whites to have Alzheimer’s, in part because they tend to live longer, the report notes.
Caregiving (which we have blogged about on several occasions) is of course an important issue for all of us, but in particular, this story explains, "[a]bout 1.8 million Latino families nationwide care for someone with Alzheimer’s and other types of dementia. And while the Roybal report shows that Latino families are less likely than whites to use formal care services, such as nursing home care, institutionalized care is becoming more common among these families." Although there are some in nursing homes, limited resources factor in to the family's ability to turn to outside help for the elder with Alzheimer's.
The story covers the economics of care, available community programs, the importance of public education, and resources for the family.
When seeking support, the best place to start is at a local community group or center — a church, a nonprofit, a United Way office, or the local Alzheimer’s Association chapter, for example, Mizis said. These groups will most likely refer caregivers to a county’s Agency on Aging or a state’s Department of Aging.
Friday, February 17, 2017
As we have discussed often on this Blog, one key issue in guardianships can be the right of access between third persons and the protected ward. Arizona has adopted a new rule expressly permitting individuals with "significant relationships" with a ward to petition the court for access if the appointed guardian is denying contact. A key section of the new law, adding Arizona Rev. Statutes Section 14-1536, effective as of January 1, 2017, provides:
"A person who has a significant relationship to the ward may petition the court for an order compelling the guardian to allow the person to have contact with the ward. The petition shall describe the nature of the relationship between the person and the ward and the type and frequency of contact being requested. The person has the burden of proving that the person has a significant relationship with the ward and that the requested contact is in the ward's best interest."
In deciding whether to grant access the court is obligated to consider the ward's physical and emotional well-being, and to consider factors such as the wishes of the ward "if the ward has sufficient mental capacity to make an intelligent choice," whether the requesting person has a criminal history or a history of domestic or elder abuse, or has abused drugs or alcohol. The new law also gives the ward the direct right to petition for contact with third persons.
"Significant relationship" is defined in the statute as meaning "the person either is related to the ward by blood or marriage or is a close friend of the ward as established by a history of pattern and practice."
The Arizona guardianship law was also amended to mandate that guardians notify "family members" when an adult ward is hospitalized for more than 3 days or passes away. Section 14-1537 provides notice shall be given to the ward's spouse, parents, adult siblings and adult children, as well as to "any person who has filed a demand for notice."
I have also run into the issue of access where the care for the incapacitated person is being provided by means of family member or third person acting through a "power of attorney." Sadly, in some states, the access issue triggers a full blown guardianship proceeding. Should a similar "significant relationship" test be used to provide a court petition-system outside of guardianships?
February 17, 2017 in Cognitive Impairment, Current Affairs, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship, Estates and Trusts, Ethical Issues, Health Care/Long Term Care, State Cases | Permalink | Comments (0)
Monday, February 6, 2017
Have you ever spent the night in a nursing home or dementia care center? How about for a week?
While on my sabbatical in Arizona I had the recent opportunity to spend several nights and many daytime hours in a care center. Quite simply, the experience deepened my respect and appreciation for the roles played by professional caregivers at all levels.
The facility in question is a nonprofit center, licensed for assisted living, and devoted exclusively to dementia care without restraints, the very definition of "mission driven" care. Set in a five acre campus, it is what I would call a "green house model" community (or more precisely, an Arizona Model Dementia Specific Assisted Living Project), with a maximum of twelve residents per cottage. It isn't a fancy place, but it is inviting, with a circular path between the four cottages that encourages people to sit under the trees, mingle and chat. Many residents are admitted on "private pay" status, but the center is also Medicaid certified.
Three shifts per day of CNAs (certified nursing assistants), usually at least two per cottage for each shift, provide the bulk of the personal care, cleaning, and meal service for the residents. The CNAs rotate shifts between the four cottages over the course of a single work week, sharing the workload of more challenging residents. There is also a small staff at the administrative level, including an executive director (who is working on her PhD thesis in her rare, spare time) and two LPNs, and there is regular input from both an MD and a very experienced Nurse Practitioner (who also has a PhD). A jack-of-all trades-building-maintenance-man, an up-beat program planner, plus two expert cooks round out the staff. I was on a nodding acquaintance with many of these people as a result of regular visits for close to three years, but my most recent ten days of "living in" gave me profound new appreciation.
The news media, for understandable reasons perhaps, tends to focus on tragedies and bad experiences in long-term care. Lawyers also tend to do the same, although for other reasons. At a recent legal conference, an experienced attorney who represents families in tort suits against nursing homes told me that in his experience, there are "no good nursing homes," only "less bad" ones.
Frankly, my experience, not just recently, but over 30+ years, is that there are very good care centers available. And the quality of living can be better than in the ol' homestead. It does take time to choose the right center for a loved one, and not every place will work for every person. I suspect the differences depend on how well any center identifies and supports its chosen mission of care. The attitude at the top affects the attitude of every employee.
To start at the executive director level, I learned this week that an awning that magically appeared one hot summer day to shade the favorite bench of one resident came from the director's own home. The attractive, sail-like canvas was adjusted "just so" between a building and a tree to provide maximum protection without making the often restless resident feel trapped.
Regular readers of the Elder Law Prof Blog may have guessed. That sun-worshiping resident was my father, a retired judge. He liked to hold court on that bench.
Another resident would often accompany the maintenance man on his daily rounds -- carrying a tool or pushing a cart. That probably slowed the maintenance man down. But I never heard a complaint. On "tough days" for that resident, when he wasn't tracking enough to safely accompany the maintenance man, that same employee would gently and kindly guide him by the shoulder back to his cottage.
One woman, who did not speak English, liked to dance. At the regular planned musical events, I would see even the shyest CNAs allow this woman to draw them onto the stage to join the entertainers with happy feet. My sister joined her in dancing too.
Another resident, who became one of my favorites, sadly had aphasia, making it hard for him to find words to express himself. Instead, he howled. I listened mornings and nights as those hard-working CNAs would correctly interpret his happy howls -- or his sad howls -- or his "I don't want a shower" howls, without losing patience.
This staff includes people born and raised in the U.S., including several from tribal lands. But there is always a shortage of CNAs. This particular staff also includes men and women who are immigrants from foreign lands: Mexico, several countries in Africa, the Middle East, eastern Europe, India, Indonesia, and the Philippines. Many of the caregivers, working 40 hours or more per week, were also caring for disabled relatives in Arizona, or were sending money "home" to support other family members in need. One caregiver, a permanent U.S. resident, is considering the tough question of whether to return to the country of birth in order to join a spouse currently detained and facing deportation for illegal entry. Their children, born in the U.S., would become strangers in that foreign land.
The workers at my father's assisted living center are part of a United Nations of Caregiving.
Wednesday, January 25, 2017
The winter issue of Columbia University's Magazine has an article on Your Beautiful Brain: Dispatches from the Frontiers of Neuroscience. I was particularly interested in the account of Nobel Prize-winning Professor Eric Kandel's 50+ years of research that began by looking at Aplysia -- a "blobby mollusk with protruding feelers that resemble rabbit ears" -- thus contributing to the mollusk's nickname, the "sea hare."
Clearly to Professor Kandel, the mollusks' brains were beautiful, not least because their comparatively large neural structures provided an accessible way to study more complex structures such as the human brain. Dr. Kandel, now 87, admits that "hunches" have played a role in his research.
From Columbia Magazine:
Today, as neuroscientists worldwide pursue remedies for Alzheimer’s and age-related memory loss, Kandel’s half century of findings are considered indispensable. Substantive therapies for Alzheimer’s in particular are “poised for success,” says Jessell, a colleague of Kandel’s for thirty-five years. “We’re on the cusp of making a difference.” But accompanying that claim is a caveat; the fledgling remedies are not panaceas. “We’re not necessarily talking about curing the disease,” he says. “But we are talking about slowing the symptomatic progression of the disease so significantly that lifestyles are improved in a dramatic way. If in ten years we have not made significant progress, if we are not slowing the progression of Alzheimer’s, then we have to look very seriously at ourselves and ask, ‘What went wrong?’”
Breakthroughs could happen sooner, however. Some of the Alzheimer’s medications available now “probably work,” says Kandel, except for one obstacle: “By the time patients see a physician, they’ve had the disease for ten years. They’ve lost so many nerve cells, there’s nothing you can do for them.” Possibly, with earlier detection, “those same drugs might be effective.” That’s not a certainty, insists Kandel, only a “hunch.”
Professor Kandel has also explored the biological differences between "ordinary" age-related memory loss and Alzheimer's Disease.
Years ago, Kandel had another hunch — that age-related memory loss was not just early-stage Alzheimer’s, as many neuroscientists believed, but an altogether separate disease. After all, not everyone gets Alzheimer’s, but “practically everyone,” says Kandel, loses some aspects of memory as they get older. And MRI images of patients with age-related memory loss, as demonstrated by CUMC neurology professor Scott Small ’92PS, have revealed defects in a brain region different from those of the early-stage Alzheimer’s patients.
Kandel also knew mice didn’t get Alzheimer’s. He wondered if they got age-related memory loss. If they did, that would be another sign the disorders were different. His lab soon demonstrated that mice, which typically have a two-year lifespan, do exhibit a significant decrease in memory at twelve months. With that revelation, Kandel and others deduced Alzheimer’s and age-related memory loss are distinct, unconnected diseases.
Then Kandel’s lab (again, with assistance from Small) discovered that RbAp48 — a protein abundant in mice and men — was a central chemical cog in regulating memory loss. A deficit of RbAp48 apparently accelerates the decline. Knocking out RbAp48, even in a young mouse brain, produces age-related memory loss. But restoring RbAp48 to an old mouse brain reverses it.
Now what may be the eureka moment — this from Gerard Karsenty, chairman of CUMC’s department of genetics and development: bones release a hormone called osteocalcin. And Kandel later found that osteocalcin, upon release, increases the level of RbAp48.
“So give osteocalcin to an old mouse, and boom! Age-related memory loss goes away.”
The same may prove true in humans. A pill or injectable could work, says Kandel: “Osteocalcin in a form people can take is something very doable and not very far away.” In less than a decade, age-related memory loss might be treatable. “This,” he says, “is the hope.”
For more on beautiful brains, read the full article on Columbia University's website.
Tuesday, January 24, 2017
Delirium and dementia are common causes of cognitive impairment in older populations. Although each may occur independently, delirium and dementia frequently coexist. Dementia is a leading risk factor for delirium, and there is an increased incidence of new dementia and cognitive decline after delirium. Delirium can accelerate the rate of cognitive decline, suggesting that an episode of delirium can result in a more rapid progression of dementia symptoms, leading to earlier functional disability, increased caregiver burden, and rising health care costs. As the population ages, there has been a rapid increase in the incidence and prevalence of delirium and dementia. Better understanding of the risk factors, outcomes, and mechanistic associations between these 2 conditions is therefore critical for developing successful prevention and treatment strategies for this increasing problem.
The conclusions and relevance from the article offers this:
CONCLUSIONS AND RELEVANCE Delirium in the presence of the pathologic processes of dementia is associated with accelerated cognitive decline beyond that expected for delirium or the pathologic process itself. These findings suggest that additional unmeasured pathologic processes specifically relate to delirium. Age-related cognitive decline has many contributors, and these findings at the population level support a role for delirium acting independently and multiplicatively to the pathologic processes of classic dementia.
A new one hour documentary, Alzheimer's: Every Minute Counts, is scheduled to begin airing nationally on PBS stations on Wednesday, January 25.
In part, the documentary will focus on research funding issues. Dr. Ruby Tanzi, a Harvard Medical School researcher who appears on the film, explained for NextAvenue's website:
We should be absolutely panicked at the government level. When the Medicare and Medicaid [treatment and care] bill for Alzheimer’s goes from one in five dollars to one in three dollars — that could happen over the next decade with baby boomers getting older — we could single-handedly collapse Medicare and Medicaid with Alzheimer’s disease.
Now, the government [research funding for Alzheimer's] has gone up to about a billion dollars. Which is great, it’s more money. It’s still not the billions of dollars that go to other age-related diseases. I’m glad that cancer and heart disease and AIDS get many billions of dollars, but Alzheimer’s has to get as much or more now given the epidemic and the urgency here with how many cases we’re going to have.
It’s going to crush us. Never mind the social burden on the families. I might add that two-thirds of patients are women. And most caregivers are women. What’s going to happen when so much of our female population is (struck) with this disease? So it’s a huge problem and if we don’t throw a ton of money at it now, it’ll be a disaster.
For more information on the documentary, including links to watch it on-line (free!), see PBS "Alzheimer's: Every Minute Counts." There is an important opportunity here for schools, including law schools, to host an airing of the documentary to promote discussion about strategies.
Thursday, January 19, 2017
The New York Times has a recent article that resonates with me. I am spending my sabbatical time in Arizona in order to be of more help to my sister with our parents who are both in their 90s. Neither my sister or I have children and we sometimes question what will happen with us if we reach our parents' age with similar needs. Here's an excerpt from the piece that gets right to the point:
While the demand for caregivers is growing because of longer life expectancies and more complex medical care, the supply is shrinking, a result of declining marriage rates, smaller family sizes and greater geographic separation. In 2015, there were seven potential family caregivers for every person over 80. By 2030, this ratio is expected to be four-to-one, and by 2050, there will be fewer than three potential caregivers for every older American.
For more, read the thoughtful essay Who Will Care for the Caregivers? by Dr. Dhruv Khullar, a resident physician at Massachusetts General Hospital and Harvard Medical School.
Tuesday, January 17, 2017
With the new Presidential administration ahead, many of us are asking what government policies or programs will be "re-imagined." With changes on the horizon, an especially interesting perspective on long-term care is offered by UCLA Law Professor Allison Hoffman with her recent article, "Reimagining the Risk of Long-Term Care," published in the Yale Journal of Health Policy, Law & Ethics. From the abstract:
While attempting to mitigate care-recipient risk, in fact, the law has steadily expanded next-friend risk, by reinforcing a structure of long-term care that relies heavily on informal caregiving. Millions of informal caregivers face financial and nonmonetary harms that deeply threaten their own long-term security. These harms are disproportionately experienced by people who are already vulnerable--women, minorities, and the poor. Scholars and policymakers have catalogued and critiqued these costs but treat them as an unfortunate byproduct of an inevitable system of informal care.
This Article argues that if we, instead, understand becoming responsible for the care of another as a social risk--just as we see the chance that a person will need long-term care as a risk--it could fundamentally shift the way we approach long-term care policy.
As one informal caregiver and scholar described: “I feel abandoned by a health care system that commits resources and rewards to rescuing the injured and the ill but then consigns such patients and their families to the black hole of chronic ‘custodial’ care.” What next friends do for others is herculean, both in terms of the time spent and the ways that they offer assistance.
January 17, 2017 in Current Affairs, Dementia/Alzheimer’s, Ethical Issues, Federal Statutes/Regulations, Health Care/Long Term Care, Medicaid, Social Security, State Statutes/Regulations, Statistics | Permalink | Comments (0)
Wednesday, January 11, 2017
I'm much overdue in writing about a terrific, recent workshop at Arizona State University's Sandra Day O'Connor College of Law on "The Aging Brain." For me it was an ideal gathering of disciplines, including experts in neurology, psychology, health care (including palliative care and self-directed aid-in-dying), the judiciary, and both practitioners and academics in law (not limited to elder law). Even more exciting, that full day workshop (11/18/15) will lead into a public conference, planned for fall 2017.
Key workshop moments included:
- Preview of a potentially ground-breaking study of early-onset Alzheimer's Disease (AD) centered on a family cluster in the country of Columbia with a genetic marker for the disease and a high incidence of onset. By "early onset," we're talking family members in their 40s. The hope is that by studying the bio-markers in this family, that not only early onset but later-in-life onset will be better understood. Eric Reiman, with professional affiliations with Banner Health, Arizona State University and University of Arizona, spoke at the workshop, and, as it turned out, he was also featured on a CBS 60 Minutes program aired a short time later about the family-based study. Here's a link to the CBS transcript and video for the 60 Minutes program on "The Alzheimer's Laboratory."
- Thoughtful discussion of the ethical, legal and social implications of dementia, including the fact that self-directed aid-in-dying is not lawful for individuals with cognitive impairment. Hank Greely from Stanford University Law and Medical Schools, and Professor Betsy Grey for ASU's Sandra Day O'Connor College of Law led discussions on key issues. As biomarkers linked to AD are identified, would "you" want to know the outcome of personal testing? Would knowing you have a genetic link to AD change your life before onset?
- Overview of recent developments in "healthy" brain aging and so-called "anti-aging" treatments or medications, with important questions raised about whether there is respected science behind the latest announcement of "breakthroughs." Cynthia Stonnington from the Mayo Clinic and Gary Marchant from ASU talked about the science (or lack thereof), and Gary raised provocative points about the role of the FDA in drug approvals, tracking histories for so-called off label uses for drugs such as metformin and rapamycin.
I very much appreciate the opportunity to participate in this program, with special thanks to Betsy Grey and federal Judge Roslyn Silver for making this possible. I've also enjoyed serving as occasional guest in Judge Silver's two-semester Law and Science workshop with ASU law students. Thank you! For more on the Aging Brain programming at ASU, see here.
January 11, 2017 in Advance Directives/End-of-Life, Cognitive Impairment, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship, Estates and Trusts, Ethical Issues, Federal Statutes/Regulations, Health Care/Long Term Care, Programs/CLEs, Science | Permalink | Comments (0)
Friday, January 6, 2017
I was reading a recent blog post on the Scientific American that featured a guest blog by Dr. Snyder, the Senior Director of Medical and Scientific Operations, Medical and Scientific Relations for the Alzheimer's Association. The blog, Alzheimer's Falls More Heavily on Women Than on Men, opens with two vignettes of women who early-onset Alzheimer's.
Alzheimer’s dementia disproportionately affects women in a variety of ways. Compared with men, 2.5 times as many women as men provide 24-hour care for an affected relative. Nearly 19 percent of these wives, sisters and daughters have had to quit work to do so. In addition, women make up nearly two-thirds of the more than 5 million Americans living with Alzheimer’s today.
The blog explains that researchers are studying this to see if they can find the answer, but longevity alone isn't likely it. The post also reports on the work of the Alzheimer's Association including a funding initiative for 9 research projects. Some are looking at lifestyle factors including stress and education. The article concludes with a discussion of the role and importance of advocacy
Sunday, December 25, 2016
The National Center for State Courts, in conjunction with the Conference of Chief Justices (CCJ) and the Conference of State Court Administrators (COSCA) released its Strategic Action Plan 2016 Adult Guardianship Initiative which was adopted on December 1, 2016. According to the report "[t]he mission of the Adult Guardianship Initiative is to improve state court responses to guardianship and conservatorship matters. This Initiative encourages the use of less restrictive alternatives, the prioritization of the protected person’s individual rights, active court monitoring and oversight, the modernization of processes, and the restoration of rights."
The initiative has 4 goals:
Develop and maintain a partnership of key stakeholders ...
Prioritize the protection and enhancement of individual rights ...
Promote modernization and transparency in the guardianship process ...
Enhance guardianship/conservatorship court processes and oversight ...
The initiative also lists several concept projects: (1) Funding and Implementing a Guardianship Court Improvement Program; (2) Conservatorship/Guardianship Accountability Project: Building a National Resource that uses Technology and Analytics to Modernize the Process; (3) National Summit for Courts on Improving Adult Guardianship Practices; (4) Establishing Judicial Response Protocols to Address Guardianship Abuse, Neglect and Exploitation; (5)Developing a Mentor Guardianship Court Program; and (6) Building a Research Portfolio and Developing Court Performance Management Systems.
Visit the Center for Elders and the Courts for more information.
December 25, 2016 in Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship, Health Care/Long Term Care, State Cases, State Statutes/Regulations | Permalink | Comments (0)
Monday, December 19, 2016
We have written several posts about the graying of the prison population. Here is one more-looking at the long term care prisons provide, functioning in some instances as a nursing home or a hospice. Kaiser Health News (KHN) ran the story, More Prisoners Die Of Old Age Behind Bars.
The number of federal and state prisoners age 55 or older reached over 151,000 in 2014, a growth of 250 percent since 1999.
As this population grows, prisons have begun to serve as nursing homes and hospice wards caring for the sickest patients. The majority of state prisoners who died in 2014 were 55 years or older, and 87 percent of state prisoners died of illnesses, according to the report. The most common illnesses were cancer, heart disease and liver failure.
The article, noting that elders may have multiple health conditions, reports of one inmate with dementia who was placed in the general population rather than in the medical wing. The article also discusses the early release program in some states, known as "compassionate release"
For prisoners clamoring to spend their dying days at home, U.S. prison jurisdictions have some laws on the books, often called “compassionate release” or “medical parole,” allowing for early release if prisoners are very sick and not a threat. But in practice, very few inmates are set free through these programs, said Dr. Brie Williams, director of the University of California Criminal Justice and Health Project in San Francisco.
However, compassionate release isn't always the solution as the article points out, especially when those seeking release are violent offenders, as the article explains some instances where early release of a prisoner resulted in another crime, or release was obtained through fraud. But without compassionate release, the prisoners die in prison, and thus the prison needs to provide nursing home or hospice care for inmates.
What's the solution to this growing problem? " Williams has been watching the population of older prisoners continue to grow, outpacing the general population of the U.S. As this trend continues, she said, prisons and jails need to catch up... 'I’m talking about a massive expansion of the field of palliative care into the correctional system,” she said, “so it’s integrated into the fabric of correctional care.'”
Last week CMS issued an FAQ for Medicaid beneficiaries in the community who wander. FAQs concerning Medicaid Beneficiaries in Home and Community-Based Settings who Exhibit Unsafe Wandering or Exit-Seeking Behavior offers 4 FAQs. Each FAQ offers suggestions for providers. For example, FAQ 3 offers suggestions for staffing, "environmental design" and activities while FAQ 4 offers actions that the providers can take, such as "[e]nsuring that individuals have opportunities to visit with and go out with family members and friends, when they want this." The 4 FAQs are:
How can residential and adult day settings comply with the HCBS settings requirements while serving Medicaid beneficiaries who may wander or exit-seek unsafely?
Can provider-controlled settings with Memory Care Units with controlled-egress comply with the new Medicaid HCBS settings rule? If so, what are the requirements for such settings?
What are some promising practices that HCBS settings use to serve people who are at risk of unsafe wandering or exit-seeking?
How can residential and adult day settings promote community integration for people who are at risk of unsafe wandering or exit-seeking? What are some examples of promising practices for implementing the community integration requirements of the regulations defining home and community-based settings and simultaneously assuring the safety of individuals who exhibit these behaviors?