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?
Sunday, December 4, 2016
The Alzheimer’s Association blog recently ran a post about the challenges of long-distance caregiving. The post features an interview with Richard Lui, a reporter for NBC and MSNBC, who flies weekly across country. Finding Joy in the Face of Alzheimer’s: Richard Lui Talks Family & Long-Distance Caregiving His interview discusses the challenges, cultural issues, how his profession helps and his moments of joy:
I find moments of joy every time I go home! My Dad is a joyous person, which is much different from his personality before the diagnosis. He was a pastor and couldn’t support the family on his salary, so he became a social worker to have a steady income, but that didn’t pay much either and he wasn’t built emotionally for social work’s noble but trying tasks. He cared too much and was often stressed.
As a social worker, he was forward with people and told them what they had to be prepared for. In a way, he was equipping himself to be the happy embracive person he is today. And there’s the silver lining. He accepts his diagnosis for what it is.
For my own part, I’ve had to accept Dad’s Alzheimer’s diagnosis spiritually and emotionally. There was a time when I would describe being with him like watching my father die in front of me. Now I see him being born again in front of me. Life is a stack of pancakes, and Alzheimer’s takes the top pancakes little by little until you’re left with none. But through this process, my father has shown me another side. He hugs me and kisses me and tells me that he loves me over and over again. This is the person he always was who I’m only now getting to know.
Thursday, November 24, 2016
We all need a little good news right now. So this one caught my eye. Dementia rates have declined amongst elders (yay). Kaiser Health News reported Dementia Rates Decline Sharply Among Senior Citizens citing to a study recently published in the AMA Journal of Internal Medicine. A Comparison of the Prevalence of Dementia in the United States in 2000 and 2012 reports on a drop from 11.6% to 8.8% on the years of the study.
Here's the abstract:
Importance The aging of the US population is expected to lead to a large increase in the number of adults with dementia, but some recent studies in the United States and other high-income countries suggest that the age-specific risk of dementia may have declined over the past 25 years. Clarifying current and future population trends in dementia prevalence and risk has important implications for patients, families, and government programs.
Objective To compare the prevalence of dementia in the United States in 2000 and 2012.
Design, Setting, and Participants We used data from the Health and Retirement Study (HRS), a nationally representative, population-based longitudinal survey of individuals in the United States 65 years or older from the 2000 (n = 10 546) and 2012 (n = 10 511) waves of the HRS.
Main Outcomes and Measures Dementia was identified in each year using HRS cognitive measures and validated methods for classifying self-respondents, as well as those represented by a proxy. Logistic regression was used to identify socioeconomic and health variables associated with change in dementia prevalence between 2000 and 2012.
Results The study cohorts had an average age of 75.0 years (95% CI, 74.8-75.2 years) in 2000 and 74.8 years (95% CI, 74.5-75.1 years) in 2012 (P = .24); 58.4% (95% CI, 57.3%-59.4%) of the 2000 cohort was female compared with 56.3% (95% CI, 55.5%-57.0%) of the 2012 cohort (P < .001). Dementia prevalence among those 65 years or older decreased from 11.6% (95% CI, 10.7%-12.7%) in 2000 to 8.8% (95% CI, 8.2%-9.4%) (8.6% with age- and sex-standardization) in 2012 (P < .001). More years of education was associated with a lower risk for dementia, and average years of education increased significantly (from 11.8 years [95% CI, 11.6-11.9 years] to 12.7 years [95% CI, 12.6-12.9 years]; P < .001) between 2000 and 2012. The decline in dementia prevalence occurred even though there was a significant age- and sex-adjusted increase between years in the cardiovascular risk profile (eg, prevalence of hypertension, diabetes, and obesity) among older US adults.
Conclusions and Relevance The prevalence of dementia in the United States declined significantly between 2000 and 2012. An increase in educational attainment was associated with some of the decline in dementia prevalence, but the full set of social, behavioral, and medical factors contributing to the decline is still uncertain. Continued monitoring of trends in dementia incidence and prevalence will be important for better gauging the full future societal impact of dementia as the number of older adults increases in the decades ahead.
The authors offer these findings from their study "Population brain health seemed to improve between 2000 and 2012; increasing educational attainment and better control of cardiovascular risk factors may have contributed to the improvement, but the full set of social, behavioral, and medical factors contributing to the improvement is still uncertain."
The Kaiser article offers some perspective about what this drop means: "The number of Americans over age 65 is expected to nearly double by 2050, reaching 84 million, according to the U.S. Census. So even if the percentage of elderly people who develop dementia is smaller than previously estimated, the total number of Americans suffering from the condition will continue to increase, said Keith Fargo, director of scientific programs and outreach, medical and scientific relations at the Alzheimer’s Association."
So with the end of the semester, and we are grading exams, just think how good this will be for us in the long run!
Monday, October 31, 2016
Recently, San Diego residents learned the sad news that a much appreciated former coach of the Chargers football team, Marty Schottenheimer, age 73, has Alzheimer's Disease. The article I read called it "early onset Alzheimer's." Apparently the original diagnosis was made in 2011, when retired Coach Schottennheimer was approximately age 68. Our wishes to "Coach Marty" and his family.
It is, perhaps, also appropriate to point out that "early onset dementia" is different than than "early diagnosis of dementia." Medical experts typically refer to early onset dementia (sometimes EOAD for Alzheimer's type dementia) only for individuals age 65 or younger, often in a person's 50s, or even earlier.
As an example from the sports world, legendary University of Tennessee women's basketball coach, Pat Summitt, publicly revealed her diagnosis of "dementia, Alzheimer's type," in 2011, at age 59. She continued as the head coach for another academic year, before electing to retire (with, in her words, a "small r").
In the last chapter of her third book, Sum It Up, Pat wrote movingly about her final year of coaching and the impact of her diagnosis, also admitting that she had probably been functioning "well" with Alzheimer's for about three years before she, with the help of her son, sought a diagnosis. She explains how the fact of her diagnosis also led them to explore treatments and management techniques they might otherwise have ignored.
As larger numbers of adults are living longer, I think we are hearing more frequently directly from persons in high positions about diagnoses of Alzheimer's or other neurocognitive impairments. This is important, because when healthy-living sports heroes are affected, we are more likely to pay attention and seek answers for everyone. Whenever I see such news, even as I'm sad, I admire the courage of the speakers and am grateful for their candor. Seeing famous people continue to function, make realistic plans, and enjoy life is important for the "not-so-famous" too. Their public candor highlights the critical need for discovery of preventions and cures for everyone.
I suspect that when a member of the press -- or the nonmedical public -- refers to "early onset Alzheimer's," it is a reflection of hope, hope that any diagnosis at 70, 75, or even 80 must be unusual, rare, and therefore not a threat to "me" before some magically "older" age that is still far off, in the future.
The Washington Post recently had a good article titled Facing Financial Reality When Early Dementia is Diagnosed. It begins with Chuck McClatchey's realization that something was wrong:
He moved to Fort Worth at age 61 with his partner Bobbie Duncan, and they spent $25,000 in savings on a fixer-upper house. His plan was to work until he was 70. But then things got strange. “I was having trouble understanding new technologies and things that I should have known off the top of my head” and having trouble using Word and Excel and PowerPoint, “things I had known for years."
He left that job but had problems in another, simpler job at Lowe’s.
Then one day, amid growing confusion, came clarity.
“I brought home a little desk for me to put together,” he said. “I love to put things together, the more complicated the better.” It should have taken about half an hour. Instead, two hours later, “the pieces just weren’t going together like I thought they should.”
Duncan finally said what they both knew. He needed to see a doctor about what was going on in his brain. The diagnosis was Alzheimer’s. . . .
McClatchey's early diagnosis allowed him to get help while he was still well able to participate in planning. He applied for Social Security disability at age 61 and also became an "early stage advisor" for the the Alzheimer's Association.
Reading this article reminded me of a good friend who also received a diagnosis of Alzheimer's at an early stage. Betty has often inspired me by how she has approached this fact. She quietly told friends of her diagnosis, but she did not retreat from life. Betty stays engaged and has a full social life. She has made critical accommodations -- she keeps a daily journal to help with tasks and memory -- and her children have rallied to support and help her, while still giving her as much autonomy as possible. Indeed, her family was instrumental in these changes as they insisted on that first evaluation, rather than brushing away early warning signs as merely due to stress. Thus, "self awareness" of both Betty and her family has been essential in creating a short and long range plan for the future.
The Post article also suggests that not every financial professional is skilled at recognizing how to help individuals with cognitive impairments, whether diagnosed or undiagnosed. I think this is true for attorneys and other professionals as well. Good intentions alone are not enough. From the article:
Being good with money isn’t the only skill required to help dementia sufferers. Corey Purkat, an Oakdale, Minn., financial planner, found himself unable to help a couple in their 80s who hired him to help sort things out in the early stages of the wife’s dementia. She had been a financial professional whose memory issues rapidly worsened. As they did, “she got defensive that someone would have to help her with something she had done for a living.” That put more stress on her husband, who decided “he wasn’t up to making the hard decisions.”
“I did what I could, and I did the best I could,” he said of their amicable parting. But if a similar case comes up in the future, he said, “my goal is to refer them to someone with more experience” with dementia.
It takes courage to get a diagnosis when early, subtle warning signs appear. It takes courage to help a family member get that diagnosis. Our thanks to George Washington Law Professor Naomi Cahn for sharing the link to this and other timely Washington Post articles.
Friday, October 21, 2016
LeadingAge, the trade association that represents nonprofit providers of senior services, begins its annual meeting at the end of October. This year's theme is "Be the Difference," a call for changing the conversation about aging. I won't be able to attend this year and I'm sorry that is true, as I am always impressed with the line-up of topics and the window the conference provides for academics into industry perspectives on common concerns. For example, this year's line up of workshops and topics includes:
- General sessions featuring Pulitzer Prize winning journalist Charles Duhigg on the "The Science of Productivity," 2013 MacArthur Fellow and psychologist Angela Duckworth on the the importance of grit and perservance for successful leadership, and famed neurosurgeon and speaker Sanjay Gupta on "Medicine and the Media."
- Hundreds of sessions, organized by "interest groups":
October 21, 2016 in Advance Directives/End-of-Life, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Discrimination, Elder Abuse/Guardianship/Conservatorship, Ethical Issues, Federal Statutes/Regulations, Health Care/Long Term Care, Housing, International, Legal Practice/Practice Management, Medicaid, Medicare, Programs/CLEs, Property Management, Retirement, Science, Social Security, State Cases, State Statutes/Regulations, Veterans | Permalink | Comments (2)
Tuesday, October 11, 2016
Robin Williams was an amazing, brilliant individual. His wife, Susan Schneider Williams, wrote an editorial recently for Neurology. The terrorist inside my husband's brain was written to help the doctors have a better understanding of their patients, spouses and caregivers. This is a compelling essay that gives us insight into Mr. Williams' situation and that of his wife. All dementias are horrible diseases, and Lewy Body strikes almost 1.5 million folks according to the editorial. Of course, Mr. Williams isn't the only one who has had Lewy Body, but he might be the most famous and was one of the few hit so hard by the disease. "Although not alone, his case was extreme. Not until the coroner's report, 3 months after his death, would I learn that it was diffuse LBD that took him. All 4 of the doctors I met with afterwards and who had reviewed his records indicated his was one of the worst pathologies they had seen. He had about 40% loss of dopamine neurons and almost no neurons were free of Lewy bodies throughout the entire brain and brainstem."
Mrs. Williams walks the reader through the last months of their life together, describing how the disease was affecting Mr. Williams personally and professionally. Brilliant and talented, "Robin was losing his mind and he was aware of it. Can you imagine the pain he felt as he experienced himself disintegrating? And not from something he would ever know the name of, or understand? Neither he, nor anyone could stop it—no amount of intelligence or love could hold it back." She explains the difficulties with diagnosis and their work to determine how to treat him.
She offers that she and Mr. Williams "had begun our unplanned research on the brain through the door of blind experience. During the final months we shared together, our sights were locked fast on identifying and vanquishing the terrorist within his brain. Since then, I have continued our research but on the other side of that experience, in the realm of the science behind it."
This is a powerful, emotional first person account.
Thursday, October 6, 2016
Kaiser Health News wrote about a new and somewhat controversial therapy being used with Alzheimer's patients, known as "doll therapy." When Pretend Play Is Real For Alzheimer’s Patients explains that "[n]ursing homes and other senior facilities nationwide are using a controversial technique called doll therapy to ease anxiety among their residents with dementia. Senior care providers and experts say the dolls are an alternative to medication and help draw in elderly people who are no longer able to participate in many activities."
As elder law profs, we know how important it is to educate our students about autonomy and avoiding stereotypes, so some may be wondering about the therapeutic benefit this therapy might have with elders. An expert from the Alzheimer's Association expounded on that point: "[c]aregivers aren’t trying to make their charges believe the dolls are real infants, and they don’t want to infantilize the seniors ... They are just 'trying to meet them where they are and communicate with them in a way that makes sense to them.'” The article refers to some studies on this therapy, features stories of individuals with family members who have undergone the therapy and discusses some of the concerns about such therapy such as the perception that may arise as a result of elders playing with dolls.
The story made me think of Paro, the therapeutic robot which is used for some similar reasons, such as "to reduce patient stress... stimulates interaction between patients and caregivers... and improves the socialiazation of patients with each other and with caregivers...."