Tuesday, June 23, 2015
On the PRX radio program 99% Invisible, an episode caught my attention over the weekend (midnight driving, listening to satellite radio again...). Castle on the Park is the story of the nation's first hospital devoted solely to the treatment of cancer, built in 1887 as a veritable castle on Central Park West in NYC.
The building’s fairytale appearance, it turns out, wasn’t unusual for hospitals of the time. These facilities were built like aristocratic mansions, with high walls, gatehouses, elaborate entries, and sometimes turrets, as a way of enticing wealthy patients.
In the late 1800s, hospitals were charitable institutions run by philanthropists, where poor people went for care. The wealthy mostly received care at home. Architect Charles Haight hoped the luxurious design of the New York Cancer Hospital would be a lure for paying customers.
Some aspects of the facility were cutting edge and influential, including the notion that to avoid infections, hospitals should eliminate corners in rooms that would be difficult to clean, while other innovations were, perhaps, ahead of their time, including the decision to use radium for cancer treatment.
It wasn’t until the 1930s or that surgery improved and chemotherapy and other organized radiation treatments made cancer care very lucrative. In 1939, the cancer hospital left 455 Central Park West for the Upper East Side, where it became Memorial Sloan Kettering, which is now known as one of the best hospitals for cancer treatment in the U.S.
The original castle-like structure became a nursing home -- a notorious one -- and eventually its doors were closed. However, in more evidence that everything comes full circle, especially in New York City, the location has been turned into luxury condos. As PRX radio's Roman Mars and Jessica Miller conclude, "Finally, after a hundred years of imitating upscale real estate, the castle on the park finally is actually what its always wanted to be: a nice place for rich people."
You can listen to the more detailed radio story, or read it, with pictures, here.
Tuesday, June 16, 2015
During the last two years I have had the fascinating opportunity to work on two major studies of laws and government policies affecting older persons and their families in Northern Ireland, studies initiated by the Commissioner for Older People for Northern Ireland (COPNI). The earlier study looked at safeguarding systems. Now the second study has been made public, with Northern Ireland Commissioner Claire Keatinge using the work to recommend major reforms of Adult Social Care laws in her country. The formal launch of her "call for change" occurred on June 16 in Belfast.
Two of my four research colleagues, Dr. Joe Duffy (far left, who led the research team) and Dr. Gavin Davidson, (far right) both of Queens University Belfast, were present for the launch, with Joe giving introductory remarks to the audience of government officials and community stakeholders. The fourth member of our team is Dr. Subhajit Basu of the University of Leeds in England. Our research evaluated government policies and law in more than ten nations, looking for legal trends, best practices and cutting edge social care programs.
Significantly, in addition to recommending a comprehensive legislative framework and funding structure to coordinate services for all adults in need of assistance, one key recommendation announced by Commissioner Keatinge (left center above) and highlighted in our investigative report, is to implement a "Support Visit" for any interested person age 75 years or older, by an appropriately trained health and social care worker. This recommendation, which draws upon Denmark's successful experience with a "preventative home visitor" program, would create an opportunity for a psychosocial dialogue aimed at advance planning. The goal is to help individuals and family members anticipate needs in the event of functional impairment, thus reducing the need for crisis planning.
I've become a big fan of Commissioner Keatinge; she is clear, creative, realistic, and determined to see Northern Ireland become a world leader in recognizing not just the needs but the contributions made by older adults. She does so from a platform of respecting older persons' contributions, citing research to demonstrate that over the next several decades, older adults will contribute more than £25 billion to the Northern Ireland economy through formal work, volunteering, and their roles as caretakers for both adults and children.
It had been an honor for me to work on this social care reform project. The work has given me -- and Dickinson Law students serving as research assistants, Ryan Givens and Tucker Anderson (who used his ability to speak and translate Danish to help in our field research) -- important new perspectives on proactive ways to identify and address potential needs triggered by age-related changes in demographics. Frankly, in the U.S. we spend far more time (and arguably too much time) on issues of medical care. This report is a reminder that many health-care crises could be avoided or mitigated through more proactive implementation of social care networks.For more on the Duffy, Davidson, Basu, Pearson report (June 2015), see Review of Legislation & Policy Guidance Relating to Adult Social Care in Northern Ireland.
For more on Commissioner Claire Keatinge's call for reform, see Commissioner Calls for Overhaul of Adult Social Care.
See here, for more on Denmark's approaches to services, communication and programming for older people.
Special thanks to Ryan and Tucker for their research, proofreading, editing and translation skills!
June 16, 2015 in Consumer Information, Current Affairs, Elder Abuse/Guardianship/Conservatorship, Estates and Trusts, Ethical Issues, Health Care/Long Term Care, Housing, International, Retirement, Science, Social Security, Statistics | Permalink | Comments (0)
Monday, June 15, 2015
What is unusual about this book is that it reminds us how deeply doctors themselves are affected by the strengths and limits of their profession, while also helping everyone think more deeply about key issues of living and dying. The author is a candid, persuasive writer. Early in the book, Dr. Gawande explains:
"You become a doctor for what you imagine to be the satisfaction of the work, and that turns out to be the satisfaction of competence. It is a deep satisfaction very much like the one that a carpenter experiences in restoring a fragile antique chest or that a science teacher experiences in bringing a fifth grader to that sudden, mind-shifting recognition of what atoms are. It comes partly from being helpful to others. But it also comes from being technically skilled and able to solve difficult, intricate problems. Your competence give you a secure sense of identity. For a clinician, therefore, nothing is more threatening to who you think you are than a patient with a problem you cannot solve.
There's no escaping the tragedy of life, which is that we are all aging from the day we are born. One may even come to understand and accept this fact. My dead and dying patients don't haunt my dreams anymore. But that's not the same as saying one knows how to cope with what cannot be mended. I am in a profession that has succeeded because of its ability to fix. If your problem is fixable, we know just what to do. But if it's not? The fact that we have no adequate answers to this question is troubling and has caused callousness, inhumanity, and extraordinary suffering.
This experiment of making mortality a medical experiment is just decades old. It is young. And the evidence is it is failing...."
Pretty potent stuff, right?
Friday, April 24, 2015
For me, a chilling moment in the trial of State of Iowa v. Henry Rayhons came during the prosecution's case-in-chief, with the reported testimony of a physician at Mrs. Rayhons' nursing home. According to the coverage of the trial, the doctor testified that based on her decreasing score on the BIMS (Brief Interview for Mental Status), he determined Donna Rayhons lacked the cognitive ability to give consent to sex. In contrast, a defense expert was reported to have testified it was a "medical mistake" to have used such minimal evaluations of capacity to draw an arbitrary line between permission to kiss or hug, as opposed to engaging in more intimate relations.
The contrasting testimony put a spotlight on the very serious questions of who makes decisions -- and how decisions are made -- about "capacity" to engage in essential behaviors such as sex for persons with dementia. This topic is further explored, with great prescience, by a law student at the University of Illinois in the current issue of the Elder Law Journal, written well before the Rayhons trial. Stephanie Tang, who was also the managing editor for the journal in 2014-15, writes:
To best balance the interests of the elderly with those of the states, states should develop and adopt a model assessment tool that employs a clinical perspective to evaluate a person’s capacity to consent to sexual activity. Model assessment tools provide courts with a clear and objective standard, which would increase predictability and uniformity of court decisions.
Moreover, identifying specific cognitive functions that need to be assessed would constitute a major step forward in those states that have not yet done so.This Note advocates for the use of two tests: 1) the Socio-Sexual Knowledge and Attitudes Test (SSKAT) and 2) Cognisat. Authors have previously argued for the adoption of the SSKAT to assess sexual capacity to consent among mentally retarded patients. The American Bar Association and American Psychological Association cited use of Cognistat to assess cognitive capacity to consent to sexual activity among hypothetical patients with diminished capacity.
To put this simply, in her article,When "Yes" Might Mean "No": Standardizing State Criteria to Validate The Capacity to Consent to Sexual Activity for Elderly with Neurocognitive Disorders, Ms. Tang is arguing that far more sophisticated and appropriate tools are available and should be used to assist in evaluating capacity to participate in sex. Brava, Ms. Tang!
Ms. Tang's article draws in major part on the detailed factual reporting of Bryan Gruley for Bloomberg News, in his important series on rights of the elderly with dementia. Mr. Gruley's articles began to appear as early as 2013, and became even more relevant with his investigation of the events underlying the 2014 charges against Mr. Rayhons.
Tuesday, April 21, 2015
On April 20, while the jury was hearing oral arguments on the high profile case of State of Iowa v. Henry Rayhons, I joined an academic colleague, Dr. Claire Flaherty, a neuropsychologist from Penn State Hershey Medical Center, to discuss the implications of this criminal case, during a Smart Talk public radio program in central Pennsylvania. Claire and I have been engaged in a cross-discipline dialogue for about two years about a host of legal questions that can arise with a diagnosis of any form of dementia, including FTD and Alzheimer's Disease. This time we were talking about the challenges of finding the right balance between protection from harm and recognition of human rights when the issue is sexual intimacy. Dr. Flaherty's clinical background, including her experience counseling individuals and families who are coping with the realities of dementia, helped make this a very down-to-earth conversation on a sensitive subject for live radio.
Our half of the program, was preceded by Joanne Carroll, president of TransCentral PA, and therapist and social worker Alexis Lake, a therapist and social worker who counsels LGBT clients, who discussed challenges and rights for transgender, gay, lesbian, and bi-sexual people, and the progress that has been made in the last decade, even as more progress needs to be made. I was struck by their frankness, both about their personal journeys, and the potential costs for anyone transitioning, including simple costs associated with new documents of identity, to bigger questions about how to pay for any surgeries, including whether Medicare will pay for the older person's surgery.
UPDATE: Here is an alternative link to the Smart Talk Program described above, on "SoundCloud," and available in three segments, each about 15 to 20 minutes in length. Our discussion of dementia and consent to sexual relations starts at about the 9 minute mark of Segment B.
April 21, 2015 in Cognitive Impairment, Crimes, Current Affairs, Dementia/Alzheimer’s, Discrimination, Elder Abuse/Guardianship/Conservatorship, Ethical Issues, Health Care/Long Term Care, Medicare, Science, State Cases, State Statutes/Regulations | Permalink | Comments (0) | TrackBack (0)
Monday, April 13, 2015
University of Georgia Law Professor Elizabeth Weeks Leonard has a forthcoming article in the Minnesota Journal of Law, Science and Technology. Professor Leonard, working with graduate research assistants and colleagues from the University of Georgia's Institute of Gerontology, draws upon Georgia's recent experiences in implementing a state public health registry for Alzheimer's disease or similar dementias under legislation passed in 2014. The article provides guidance on how to navigate the legal and ethical issues that can arise in implementing such a registry.
This is a cutting edge program in its early stages, as described by the authors:
"This article offers a unique window into one state’s experience establishing an Alzheimer’s disease and related dementia registry. Georgia is the most recent of handful of states to adopt such a registry and, in doing so, has already committed to robust data collection practices along with clear commitment to protecting patients’ privacy. The authors were privileged to convene a group of stakeholders to brainstorm and submit rulemaking comments on Registry implementation to the Georgia Department of Public Health.
In addition, through further consultation with state leaders in gerontology and building on our own health law, public health, and legal services expertise, we offer additional recommended best practices for the Registry. We anticipate that Georgia is leading a nationwide trend in addressing the rapidly rising incidence of Alzheimer’s disease and related dementia with the aging population. Accordingly, our recommendations will be valuable not only for Georgia but also for other states that may decide to establish similar Alzheimer’s registries."
You can get an early look at "Best Practices for a State Alzheimer's Disease Registry: Lessons from Georgia," here on SSRN. Professor Leonard's research focuses on health care finance and regulation.
Monday, March 2, 2015
Alzheimer's Research UK is releasing a report this month about the impact of dementia on women. Details released in advance of the formal launch are eye-opening.
As reported in The Guardian, “'Dementia is a life-shattering condition and represents a ‘triple whammy’ for women,' said Hilary Evans, director of external affairs at Alzheimer’s Research UK. 'More women are dying of dementia, more women are having to bear the burden of care, while a disproportionate number of women currently working in dementia research are having to leave science.'”
The full study calls for the government to make a significant increase in its funding of dementia research and an improved investment in care. Further, the report will explain that:
■ More than 500,000 women [in the U.K.] are now affected by dementia. About 350,000 men have the condition.
■ Women over 60 are now twice as likely to get dementia as breast cancer.
■ Women are more than two-and-a-half times more likely than men to be care-givers of people with dementia.
■ Most care- givers do not choose or plan to take on this role and often find the experience highly stressful.
Thanks to friends at CARDI, the Centre for Ageing Research and Development in Ireland for sharing this news. The formal launch of the Alzheimer's Research UK report appears timed to coincide with their "sold-out" 2015 Conference on March 10-11 in London.
Monday, February 23, 2015
On Saturday, I had the privilege of attending the 7th Annual Conference of the Pennsylvania Association of Elder Law Attorneys (PAELA), to give a presentation with Dr. Claire Flaherty, a Penn State Hershey Medical Center neuropsychologist with special expertise in frontal and temporal lobe impairments, on "Dementia Diagnosis and the Law."
Another speaker, Teepa Snow, an occupational therapist with long-experience in behavioral health, brain injury and dementia care, spoke on Sunday.
It was one of the rare times when I've been glad to be "snowed in" at a conference, as that kept me in place for both days of the presentations, rather than rushing home to work on some other task.
One of the topics that was discussed by attendees over the two days was the question of whether testimony by witnesses who observe "moments of lucidity" -- standing alone -- is proper support for a finding of "legal capacity." Context is important, of course, as both common law and statutory law increasingly recognize that capacity should be evaluated in terms of specific transactions.
My own takeaway from the health care experts was the need for some measure of caution in this regard. With many forms of dementia, especially at the early stages, unrecognized impairment of judgment may precede recognized impairment of memory. In other words, as I understand it, we may spend too much time being impressed by a client's ability to remember who is the president or the names of their children, and too little time asking more probing questions. Deeper inquiry may reveal or ameliorate concerns about judgment, including an individual's current abilities to make decisions, make reasonable, rational connections in formulating or following a plan, and related skills such as empathy or self-awareness.
Along this same line, it is a good time to remind readers that there are three useful handbooks on "Assessment of Older Adults With Diminished Capacity," one directed to lawyers, one to psychologists, and one for judges, that were created by experienced professionals working as a team on behalf of the American Bar Association and the American Psychological Association (APA). Individual copies can be downloaded without cost from the APA website.
Saturday, February 7, 2015
Driving home last evening, I had one of those "driveway" moments, where you don't want to shut off the car -- and thus the radio -- because a program on NPR is so compelling.
This time it was the Invisibilia story of Iggy Ignatius, born in India, but living in Florida. He decided to create a retirement community that looked like home, with low buildings, a courtyard, Bollywood movies, lots of Indian food, and lots of ... Indians. At first, his creative timing seemed all wrong, as he was opening the doors in 2008, on the threshold of what turned out to be a deep recession, hitting many Florida housing ventures hard. But, in fact, he sold out the first condo wing almost immediately, and success has apparently continued. Iggy has a theory for the popularity of his Indian retirement community:
"And at that time, he thinks, it's beyond your control. No matter who you are, you'll experience a deep primal desire to withdraw, like a salmon swimming upstream to the place of its birth to spawn and die. 'I think that is an animal instinct which we as human beings seem to have.'"
Hmmm. I'm not sure spawning salmon are experiencing the same motivations as elderly individuals, regardless of ethnicity. But, the story continued with a potential science-based explanation:
"Iggy is absolutely right, according to Jeff Greenberg, a professor of psychology at the University of Arizona. If you raise the specter of death in a person's mind, he says, Christians like Christians better; Italians like Italians better. Even Germans, who are usually pretty lukewarm about other Germans, if you get them to contemplate their own mortality, suddenly they really like Germans...."
Thus, if true, there is a potential dark side to a "return to kind," both in terms of the subconscious fears that may drive it, and the impact on community and society.
Does this make sense to you? To read or listen to the whole story, go to "Being With People Like You Offers Comfort Against Death's Chill."
Monday, February 2, 2015
I suspect that every law professor has had the experience of running into an individual -- perhaps in an airport -- who enthusiastically exclaims, "Professor So and So, do you remember me!?" Near the end of my class of 1L Contract students, I now even suggest to students that when this happens, they could help me out, by saying "Professor Pearson, I was in your 2012 class of Contracts -- Remember me!?" Thus, allowing me to at least pretend....
However, the science of facial recognition -- and perhaps memory as well -- is gaining deeper understanding with the help of a Stanford University study. A recent Stanford Report article explains the work of Stanford neuroscientists studying prosopagnosia, or facial blindness. Here is an excerpt:
Recognizing the faces of family and friends seems vital to social interaction. However, some individuals lack this essential skill. Those with a condition called face blindness, or prosopagnosia, can see eyes, lips and other facial features, yet they cannot remember the whole picture, a face. The condition touches one in 50 people, including actor Brad Pitt, neurologist Oliver Sacks, and primatologist Jane Goodall....
The brain's regions for face recognition and place recognition are located near to each other, under and behind the ears. For people with normal face and place recognition, the brain's wiring for each region is correlated with how good they are at face or place recognition, respectively. But in adults with face blindness, only the wiring of the face-recognition region is different from typical adults, and is coupled with their recognition deficit....
The brain's face- and place-recognition regions comprise grey-colored nerve cells. Extensions of those cells, or axons, range like wiring to other cells and regions of the brain to enable communication. Though face recognition is centered in particular regions of the brain, their complex function integrates perceptions such as depth, movement, shape and color, which take place in several parts of the brain. Those parts communicate with one another through axons. Thicker axons and more axons speed communication.
Each axon is sheathed with an outer layer of a white substance called myelin, similar in appearance to the way an electrical wire may be coated with an outer layer of insulation. Myelin gives the axons a white appearance, and so the axons with their sheaths are called white matter. The more myelin there is, the faster the communication. Myelin abnormalities distort or interrupt nerve impulses, as is seen in multiple sclerosis, a condition characterized by scarring of the myelin sheath. And myelin health might play a role in the development of Alzheimer's disease."
Hat tip to Stanford "mom" Laurel Terry for sharing this item.
Thursday, January 8, 2015
The Denver Post ran an article on Sunday January 4, 2015 about early detection of Alzheimer's. Alzheimer's disease researchers pursue early detection reports about the work researchers have done that has led the, according to one scientist to "the brink of understanding." Researchers at the U. of Colorado in Boulder have been working diligently, with a new drug trial and a proposal for "a federally funded research center..." The article quotes an expert from the Alzheimer's Association about how early detection is so important:
"There's broad recognition now that the brain changes that lead to Alzheimer's disease occur long before there are any symptoms," [Dr. Keith] Fargo said. "By the time changes in cognitive abilities are evident, you have lost a lot of brain cells, and much of what is going to happen with Alzheimer's disease has already happened."
Dr. Fargo goes on to note that it may take 10-20 years before it's actually found and by then, it's too late to undo the damage. Thus the race to find a way to diagnose Alzheimer's before the symptoms show up. The article discusses the work researchers are doing to figure out ways to detect the disease early on. These range from using PET scans to blood tests to "genetic profiling." The trial starting at U. of Colorado involves the "protein released in the brain of people with rheumatoid arthritis. They don't develop the disease." Another interesting area of research involves the sense of smell: those individuals who aren't good at "identifying smells are at high risk of Alzheimer's... [since the] cranial nerve that affects the olfactory sense is one of the first areas involved in brain degeneration."
This is one race we want the researchers to win-soon.
Tuesday, December 30, 2014
Researchers at the Polisher Institute at the Abramson Center for Jewish Life have published the results of a controlled study on use of non-drug approaches to behavioral assistance for individuals with dementia.
The study, titled "A Randomized Controlled Trial for an Individualized Positive Psychosocial Intervention for the Affective and Behavioral Symptoms of Dementia in Nursing Home Residents," is published in the January issue of the Journal of Gerontology (Series B: Psychological Sciences), which is accessible via subscription. From the abstract:
Objectives. This randomized controlled study tested the effectiveness of individualized activities, led by certified nursing assistants (CNAs), to increase positive and reduce negative affect and behavior among nursing home residents with dementia.
Method. Nursing home residents with mild to advanced dementia (N = 180) were randomly assigned to usual care (UC, n = 93) or 1 of 2 experimental conditions. Residents in the attention control group (AC, N = 43) participated in standardized one-to-one activities with their CNAs. Individualized Positive Psychosocial Intervention (IPPI) participants (n = 44) received a CNA-led activity matched to their interests and ability. Outcomes were residents’ positive and negative affect and verbal and nonverbal behavior.
Results. The IPPI and AC groups experienced similar benefits—more pleasure, alertness, engagement, positive touch, and positive verbal behavior—compared with UC. The AC group displayed more anger, uncooperativeness, and very negative verbal behavior than UC or IPPI.
Discussion. This study demonstrates the value of individualized activities for nursing home residents with dementia. In a stringent test, residents were happier and less angry during a customized intervention compared with a standardized intervention. Even brief individualized CNA-led activities bring pleasure to nursing home residents and constitute an effective strategy to enhance positive affect and engagement in persons with dementia.
It would be interesting to know more about what appears to be a potentially significant difference not only between the "standardized" interventions and the "individualized" approaches, but also between the different types of individualized approaches.
Wednesday, December 17, 2014
Researchers at Stanford Unviersity School of Medicine have released their latest study of brain cell degeneration in mice, suggesting the potential importance of blocking the influence of certain molecular processes associated with inflamation and Alzheimer's disease:
“'Microglia are the brain’s beat cops,' said Katrin Andreasson, MD, professor of neurology and neurological sciences and the study’s senior author. 'Our experiments show that keeping them on the right track counters memory loss and preserves healthy brain physiology.'”
Here is Stanford's new release, summarizing the study published this month in the Journal of Clinical Investigation. Hat tip to Dickinson Law's Professor Laurel Terry for sharing this news.
Tuesday, December 16, 2014
Mark Friedman, an elder law and special needs attorney from New Jersey, recently wrote to comment on the important series offered by National Public Radio on use and misuse of certain medications in long-term care settings. Here is what Mark said:
"NPR ran a story on 'chemical restraints,' - nursing homes using anti-psychotic drugs to make unruly residents more pliable. According to the article, the residents are usually Alzheimer’s or dementia patients, and anti-psychotics can make the residents easier for staff to manage. But the drugs can be dangerous, increasing a resident’s risk of falls and exacerbating health problems. At high doses, anti-psychotics can also sap away emotions and personality and put the resident into a 'stupor.'
Administering drugs in this manner, any drugs, including anti-psychotics, without medical need and for the convenience of staff, is contrary to federal regulations. Unfortunately, it may also be widespread.
The NPR story includes a tool drawn from CMS data that shows the rate of residents on anti-psychotics at nursing homes across the country. You can look up the facility in which your loved one resides.
The news coverage shows that this issue is getting increased attention, and that’s a good thing. I think that as Americans age and more people have spouses and parents in nursing homes, the use of anti-psychotics as chemical restraints will have to diminish or end. People won’t stand for their loved ones being drugged into a stupor."
Thanks, Mark, for making sure we included this topic and the latest links for more coverage and your additional commentary. Along the same lines, I listened to an interesting follow-up conversation on AirTalk, a Los Angeles public radio affiliate's program, discussing "How California is Doing in the National Fight to Curb Over-Medication of Nursing Home Patients." That program, now available as a 23-minute podcast, included an articulate medical professional, Dr. Karl Steinberg, who described how he sees medication practices changing in long-term care, including better use of behavior health techniques, rather than medication, to help residents.
December 16, 2014 in Cognitive Impairment, Current Affairs, Dementia/Alzheimer’s, Ethical Issues, Federal Statutes/Regulations, Health Care/Long Term Care, Science | Permalink | Comments (0) | TrackBack (0)
Friday, December 5, 2014
I've written often in our Blog, including here and here, about our growing awareness and national concern about the issue of financial exploitation of older persons. In brainstorming a bit with another attorney about a thorny case -- and trying to decide where a parent/child relationship went wrong -- I was reminded of the work of Professor Karen Hooker, PhD at Oregon State University's School of Social and Behavioral Sciences. A major focus of Professor Hooker's work is the influence of "personality" in aging across the lifespan. She has examined spousal caregivers for persons with dementia, looking to see how the individual's view of self and the relationship affects "success," including successful caregiving. Another part of her work has examined closely the issue of "ambivalence" in family relationships.
For example, in Dr. Hooker's research, her team used qualitative study methods to examine older parent/adult child relationships. One of the major themes emerging when parents (each aged 67+) talked about their children was awareness that their children were "busy," and thus there were often ambivalent feelings of need and dissatisfaction about the parent's interactions with their children. The study revealed feelings both of resentment and pride about their busiest children.
That has led me to think that "ambivalence" may also be a component of voluntary "principal and agent" relationships, where the adult children are asked by the parent to serve as an agent under a power of attorney, for example. But as the adult child exercises more control over financial matters, might that parent also begin to have second thoughts, thoughts that are not acted on until "too late." The children believe they had authority to "pay themselves" for their roles in handling matters for their aging parent; the parent initially agrees, or at least does not object, and only later, after the money is gone, asserts some "agreement" about the financial matters, arguing there was an "understanding," even if never express at the outset? There is room for more research here, yes?
Thursday, November 27, 2014
Recently I have encountered several thoughtful articles about the language we use, and the approaches taken, when talking with older persons. This seems to be an especially appropriate topic for the holiday season, when families often come together, sometimes from great distances. Whether we are talking with clients or family members, some of the same dynamics may be in play, especially when the question is about planning for the future.
From the ABA Commission on Law and Aging's Bifocal publication, comes David Solie's "The Wrong Signals: Shutting Down the Planning Conversation Before It Starts." He encourages us to "consider the psychological landscape of older clients -- it is a world embedded with two dominant agendas posing significant resistance to change. Together, these psychological currents create a deep inertia to disrupting the status quo." He labels these barriers to change as:
- Ambivalence and the "Righting Reflex," and
- The Need for Control
He suggests approaches, including the use of open-ended questions, reflective listening, and making a conscious decision about what words to use. For example, he suggests that when we start to discussion options, we explain more clearly that advance planning helps to "preserve choice" and avoids "loss of control."
Another potential problem may arise from "Elderspeak," a label social scientists use to refer to a tendency to use "patronizing" tones or words when speaking to anyone who is older. One recent article in McKnight's News made me chuckle, as it points to the well-meaning but potentially misguided use of words such as ""honey" by professionals when working with elders.
My father, a federal judge for more than 30 years, at age 89 may have forgotten many things -- but he does not take kindly to being called "honey" by strangers. He now has an entire assisted living campus, even a few of the other residents, calling him "Judge" or "Your Honor." I bet you might know a judge or two like that? When it comes to control, I'm not sure who is teaching whom about holding court.
Here's to more humor in all of our holidays -- and more opportunities for effective communication -- both within the family and beyond. Happy Thanksgiving!
Wednesday, November 5, 2014
Kurzweil Accelerating Intelligence (Kurzweil AI) reported in their October 21, 2014 news a story on new research, Hidden brain signatures’ of consciousness in vegetative state patients discovered. Here’s the opening paragraph “Scientists in Cambridge, England have found hidden signatures in the brains of people in a vegetative state that point to networks that could support consciousness — even when a patient appears to be unconscious and unresponsive. The study could help doctors identify patients who are aware despite being unable to communicate.”
The Kurzweil AI story includes the article’s abstract a segment of which we’ve included here
Going further, we found that metrics of alpha network efficiency also correlated with the degree of behavioural awareness. Intriguingly, some patients in behaviourally unresponsive vegetative states who demonstrated evidence of covert awareness with functional neuroimaging stood out from this trend: they had alpha networks that were remarkably well preserved and similar to those observed in the controls. Taken together, our findings inform current understanding of disorders of consciousness by highlighting the distinctive brain networks that characterise them. In the significant minority of vegetative patients who follow commands in neuroimaging tests, they point to putative network mechanisms that could support cognitive function and consciousness despite profound behavioural impairment.
Consider how these findings may be introduced in litigation where the patient is diagnosed as PVS, with one party seeking to have life-prolonging procedures removed and another objecting and seeking this test for the patient. Should we take this and other medical advances into consideration when drafting advance directives, especially instructions to our health care agents?
Tuesday, October 28, 2014
As anyone knows who has faced a diagnosis of Alzheimer's or other dementia in their own family, it can be devastating news. I remember asking the doctor whether there was some "behavioral" training or program -- in addition to or as a substitute for medication -- that might help my own family member preserve, if not improve, existing cognition. The answer at that time was a slow, sad shake of the doctor's head.
That response is why many will be pleased to hear that the Alzheimer's Association supports research into non-drug therapies. The latest grant funding for four projects, announced in Chicago last week, includes:
- A study of the use of "exercise or cognitive stimulation, or a combination of the two, for lowering the risk of cognitive decline and dementia in older adults." $247k to Dr. Amy Jack at the University of California, San Diego.
- Evaluation of the impact of aerobic interval training regimens on the brain and thinking abilities of people with type 2 diabetes. $250k to Dr. Gail Musen at Joslin Diabetes Center in Boston.
- A study of "Skill-Building Through Task-Oriented Motor Practice (STOMP) for improving daily life skills and delaying decline in people" with dementia. "STOMP utilizes repetitive therapy and a learning technique that focuses on immediate correct steps instead of trial-and-error to strengthen and preserve memory for completing daily living tasks." $100k to Dr. Carrie Ciro at University of Oklahoma Health Sciences.
For more information on Alzheimer's Association research and results, see here and here. I can say that that I'm glad to see studies of regular movement or exercise. In my own family, I saw some stabilization of cognition coincide with greater activity. Being on one level -- with easy access to the outdoors and lots of room and safe areas to walk -- has proven to be very helpful for my father.
The Annual Meeting of the Gerontological Society of America (GSA) will take place on November 5-9 in Washington D.C., bringing together more than 4,000 researchers in an interdisciplinary setting to examine cutting edge issues in science, health care, social care, and governance, including related legal issues. The conference draws many from around the world, including my friend Roger O'Sullivan from the Centre for Ageing Research and Development in Ireland (CARDI). There are more than 400 sessions to choose from!
By the way, GSA has a very useful Facebook page, chock full of links to latest research and scientific developments.
Friday, October 17, 2014
With the mid-term elections in a few weeks away, there are some interesting proposals to watch, according to a series in Governing. A story that was published on October 16, 2014 focused on Arizona. Arizona Tests Popularity of the Dying's Right to Try Unapproved Drugs focuses on the ability of terminally ill individuals to try experimental drugs. Proposition 303 would allow the patients to not wait for FDA ok if the drug maker is willing to get the drug to the patient. Arizona is not the first state to consider this. Similar provisions have been approved in Colorado, Missouri, Michigan and Louisiana.
Even though FDA approval wouldn't be required, it still isn't the wild west of experimental drug use. "The drug must have passed initial toxicity and dosage testing under the FDA’s clinical trial process. Doctors also can’t prescribe an unapproved drug unless the patient has exhausted other options. Manufacturers are under no obligation to provide the drugs and insurers aren’t required to pay for them."
The article discusses the opposition to such laws, giving reasons such as providing false hopes and the likely decrease in clinical trials. Supporters refute the agrument, noting that the terminally ill folks are not typically eligible for clinical trials. These laws are different than the FDA's "compassionate use" provisions which "allows for experimental drugs for even seriously ill patients, and the program rarely denies an application, but “right-to-try” supporters again argue that the process is too complex and slow, as evidenced by application figures averaging about 1,000 a year."
One thing different about Arizona's proposal-the residents are voting on the provision.