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?
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.
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 study is also available for download as a pdf from here.
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."
Articles about the study have appeared in several other news publications, including NPR and the New York Times.
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!
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.
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.
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":
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.
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...."
We have blogged on a number of occasions about the importance of caregivers. Kaiser Health Network (KHN) recently ran a story, A Practical To-Do List For Family Caregivers. The story starts by sharing experiences of an attorney who is the caregiver for her parents. "On several occasions, doctors have treated this accomplished lawyer like she was an interloper — not the person to whom her elderly parents had entrusted health care and legal decision-making."
Citing to the National Academies report on caregiving (which we blogged about previously), the KHN article offers some "recommendations ... extrapolated from its findings."
The caregiver needs to make sure that her status as caregiver is noted in the medical records of parents. "Thirty states, the District of Columbia, the U.S. Virgin Islands and Puerto Rico have now passed versions of the Caregiver Advise, Record, Enable (CARE) Act, drafted by AARP, which calls for information about family caregivers to be included in hospital medical records.givers should double check that the doctors have their info and lists them as the emergency contact."
The caregiver needs to make sure she is capable of providing the needed care and her tasks incorporated into the parent's care plan.
The caregiver needs to be trained on how to do the tasks (especially medical ones) she will be completing.
The caregiver needs access to her parent's medical info (make sure the parent has ok'd access) and
The caregiver should know and connect with helpful community resources.
While we are on the subject of caregivers (in case you missed yesterday's post ....) I was interested in the article published in the NY Times earlier this month on the impact caregiving has on caregivers. After all, it is a 24/7/365 job. Love and Burnout: Caregivers, Too, Need Care discusses both the emotional and financial costs of caregiving. "Though caregiving can be a profound and moving journey, caregivers’ needs are often overlooked. The health care system is mainly focused on patients; caregivers who are slowly burning out can slip by unnoticed until it is too late."
We have all seen studies about the physical manifestations of stress, but do we all realize that the physical impact can continue long after the stress is gone? "Researchers have found that the human immune system can be weakened by stress and strain for up to three years after caregiving ends. As a result, caregivers can be more prone to having serious illnesses. Yet they rarely complain."
Caregivers are true superheroes for what they do, but even superheroes can benefit from help (after all many superheroes have sidekicks or other superhero pals!) The article offers information about help and services available to caregivers, from information, to support groups, to resources to respite care.
Ever thought of which caregivers might be more affected by the role of caregiving? The article explains that "[m]en, who generally have smaller networks of friends than women, are at even greater risk. “They are less likely to maintain relationships and seek help,” said Zaldy Tan, medical director of the UCLA Alzheimer’s and Dementia Care Program. 'They’re less prepared for the caregiving role. So they have a higher burden and burnout rate.'"
Burnout is a real thing and manifests itself in a variety of physical symptoms. The article offers that the best way to combat burnout is to have help. "Perhaps the best antidote to burnout, many experts say, is building a team, rather than handling everything yourself." But there is a risk in assuming that the family will automatically pull together. "The best family teamwork involves meeting, talking and sharing responsibility ... One team member, for example, can handle medical appointments, another might be good at preparing meals. 'Have weekly phone calls if you’re in crisis....'"
Regardless of the planning, it's not going to be an easy job to be a caregiver. But it is going to be an important one.
What they’re about to enter is a world more reminiscent of one that existed in the 1930s and 1940s. The exteriors of the residences are designed to look like homes commonly found during that time period, down to the color of the paint.
The world of Svayus houses 22 residents, most of whom have Alzheimer’s disease. As the disease progresses, Makesh said, people begin to revert back to their childhood. Svayus serves as something of a time capsule.
The reasoning behind this is emotional: to provide the residents with a familiar "feel" to their residences. The company has several ALFs designed with the residents in mind. One of them offers this:
Entering into Svayus is like walking outside. In addition to the period-accurate home exteriors, residents are also greeted with a grass-green floor, (artificial) plants, a small waterfall and audio of birds chirping. Overhead is the sky ceiling, designed to help with residents’ physiological clock. During the day, residents will see a sunny sky, even on the grayest Northeast Ohio days. ...
At night, the sky ceiling darkens and the porch lights come on.
“Every little thing you see, the wall color, the paint, actually has a therapeutic benefit, a therapeutic value" ...[according to the CEO].
Different aromas also are pumped into the air, providing a therapeutic benefit. Peppermint and frankincense, for example, help with anxiety.
As far as the ALF designed as though the residents live on a golf course, "rooms designed to look like houses on a golf course. Not only is this aesthetically pleasing, the point is to help residents feel more at home. Compared to your average retirement or assisted living facility, this place looks so much more inviting and calming. The hallway features a ceiling painted like the sky, porches and even porch lights that turn on at night."
Very cool idea. I wonder what one designed for the Boomers would look like? (tie-dye curtains, peace symbols, Beatles posters anyone?)
Introduction: At the end of life, patients with dementia often experience high levels of pain due to complex interplay of disease processes and numerous barriers to symptom management. In the hospice setting, informal caregivers play an essential role in pain management. This study describes their experience managing pain in hospice patients with dementia.
Methods: We conducted a qualitative analysis of audio-recorded interviews with informal caregivers of hospice patients with dementia who had chosen pain as the challenge they wanted to work on within a problem-solving therapy intervention.
Results: The thematic analysis of sessions with 51 caregivers identified 4 themes: difficulty in communicating with patients, lack of consistent guidance from health-care professionals, perceived uncertainty about the etiology of pain, and secondary suffering.
Discussion: Our findings indicate the possible need for increased support for caregivers, including educational interventions targeting pain etiology and assessment, and improved communication with health-care professionals.
The full article is available here or as a pdf here.
I thought the points made in the discussion were well-taken. Think about a person with dementia and her ability to communicate regarding her pain level.
[The study] findings indicate that caregivers of persons with dementia in hospice face numerous and significant challenges when it comes to managing their loved ones’ pain. Several studies have already demonstrated that the needs of people with dementia at the end of life are not fully met and that caregivers require more support at this time as they may feel exhausted and alone. Furthermore, while communication between health-care providers and caregivers is important, it does not often take place at times of crisis, affecting overall quality of care... Caregivers described uncertainty about the etiology of pain, difficulties in communicating with patients, lack of consistent guidance from health-care professionals, and secondary suffering as the factors that prevented them from properly and effectively managing pain in their loved ones. Thus, these findings indicate the possible need for increased support for caregivers, including educational interventions targeting pain etiology and assessment, and improved communication with health-care professionals.
I'm always just a bit suspicious of books that promise to make me laugh. I think it is because I like to be surprised by humorous moments, rather than feel duty-bound to chuckle, guffaw or giggle.
Nonetheless, I succumbed to the promise in the blurb for Michael Kinsley's 2016 book, Old Age: A Beginner's Guide, that it was a "surprisingly cheerful book ... and a frequently funny account of one man's journey to the finish line."
And I'm glad I did. I did indeed laugh, and at the most surprising of moments, as when he described the need to avoid the doors of his refrigerator because of the magnets that might interfere with the technology in his brain used to keep symptom of Parkinson's Disease at bay. He has the knack of making wry observations about his own mortal state to think broadly about what it is for all of us to age. I can see the short essays that make up this book being useful in a class on elder law or estate planning.
His words are perhaps most poignantly relevant to boomers. For example, on a goal of living longer, he writes:
Even before you're dead, you may want to ask yourself whether this is what you really want. Is being alive all that desirable if you're alive only in the technical sense? Millions of boomers are watching their parents fade until they are no longer there. As they approach their seventies, they start observing their own peer group losing their collective marbles, one at a time. And they reasonably conclude that the real competition should not be about longevity. It should be about cognition.
But he doesn't stop there, exploring other, potentially more important goals for the competitive boomer generation to consider.
This is a short, deep book. And I recommend it, not least of all because it gives readers welcome opportunities to smile.
Last weekend, the Arizona Republic newspaper carried a Question and Answer column that caught my eye. The question began:
My grandmother lives in Scottsdale, and my wife and I live in Chicago. We only visit her two or three times a year. Although we thought my grandmother was still able to manage her financial affairs, she recently called us to say that she was being evicted from her Scottsdale home for nonpayment of HOA dues. My grandmother owns her $450,000 hoe free and clear....
HOA dues only totaled $700 originally. After the late charges, interest, and legal fees, however, there was almost $8,000 owed at the foreclosure sale two weeks ago.
How often do crises involving aging loved ones begin with the words "I thought she was doing well living alone until...?" Here the concerned grandson jumped into action and the consumer advisor suggested a range of options, including working with the "investor" to resolve the ownership and equity issues. For more you can readGrandmother Loses Home to HOA Fees on the PressReader service for the Arizona Republic, August 14, 2016.
The introduction explains: "The purpose of this article is to estimate the prevalence and identify risk factors of engaging in resident aggression and abuse in assisted living facilities. Measuring the prevalence of resident aggression and abuse in assisted living facilities is needed to better understand the scope of the problem. Identifying strategies to mitigate and prevent resident aggression and abuse can help to improve social well-being and progress toward achieving public health objectives." The authors conclude that
Prior studies have found evidence of resident abuse in nursing homes (Pillemer et al., 2011; Pillemer & Finkelhor, 1988; Pillemer & Moore, 1989). Our findings build on this knowledge base with nationally representative estimates of resident aggression and abuse in assisted living settings. In conclusion, this study provides evidence of the prevalence of resident aggression and abuse in assisted living facilities. Given the rising prevalence of dementia and aging population in the United States, resident aggression and abuse is a growing problem that warrants more attention from policy makers, researchers, and long-term care providers. Furthermore, dementia and SMI were significant risk factors for physical, verbal, and sexual abuse in residential care settings. Future research is needed to develop better methods for identifying residents at greater risk of engaging in abuse as well as supporting ongoing training and prevention efforts to mitigate this risk.
In July, I drove some 2500 miles, from Pennsylvania to Arizona, to begin an exciting sabbatical opportunity. I enjoy this drive (especially since I tend to do it fairly rarely, perhaps once every seven years). I frequently visit friends along the way, and this summer I was struck by how many friends had saved up tough elder law stories for me.
A theme emerged from their stories. They would tell me, "I have an aging friend (or sometimes a family member or neighbor) who is in serious danger of physical or financial harm, but refuses to cooperate with reasonable plans to solve the problems. What are my options to help this person I care about?"
In one instance, it seemed clear the at-risk individual was affected by some level of cognitive impairment. But how to know for sure? Was the refusal to cooperate with a "better plan" the product of a sound, if somewhat eccentric mind? A neurocognitive assessment seemed warranted. We tried to arrange one. But the earliest appointment available was more than 60 days away and the potential for harm was immediate.
Mistreatment of older persons by others is a serious problem. Both the medical and legal conundrums became more complicated, and thus even more amenable to interprofessional collaboration, when self-neglect is entailed. A significant percentage of older adults, mainly living alone, do not regularly attend to their own needs or well-being regarding health care, hygiene, nutrition, and other matters. The majority of cases reported to APS agencies by health and social service professionals and family members are triggered by suspected self-neglect. The health care system expends considerable efforts trying to intervene in these situations to prevent increased rates of hospitalization, nursing home placement, and even death.
In situations involving suspected elder self-neglect, the physician’s role is vital in recognizing the potential problem, characterizing the nature and seriousness of the risk posed, and trying to identify clinically and socially viable intervention strategies. Among other concerns, decisional capacity issues almost always arise in these cases. The physician may look to an attorney for advice about legal reporting requirements or options, as well as the legal boundaries within which interventions may be designed and implemented in a manner that best respects the older person’s dignity and autonomy while protecting the vulnerable at-risk individual from undue foreseeable, preventable self-generated harm.
A growing number of law schools (including Penn State's Dickinson Law) have established Medical-Legal Partnership Clinics, where the collaborative relationship between attorneys and physicians is established in advance of need by clients. Often such clinics focus on younger clients, especially children. Elder-specific services are an important subset of the services that can be provided in a timely and professional setting. For more, read the full Bifocal article published in the-August 2016 issue -- and ask whether such services are available in your community.
During the 2016 Annual Meeting of the American Bar Association that concluded on August 9 in San Francisco, the ABA adopted "the black letter of the ABA Standards for Criminal Justice: Criminal Justice Mental Health Standards, chapter seven of the ABA Standards for Criminal Justice, dated August 2016, to supplant the Third Edition (August 1984) of the ABA Criminal Justice Mental Health Standards."
Significantly, the revised ABA standard expressly requires criminal defense lawyers to consider the implications of ABA Model Rule of Professional Conduct 1.14 (for representation of a client with diminished capacity), in determining whether, when and how much information can be shared about the client's disability with family members or others during the course of representation. My initial reaction is this integration of the two concepts may actually broaden the defense attorney's authority to share information, rather than restrict it.
Any thoughts among our readers? My special thanks to my colleague Professor Laurel Terry at Dickinson Law, guru of all matters related to professional conduct rules for attorneys and judges, for sharing the revised standard.
Recently, a friend who is a neuropsychologist reminded me that the medical profession is moving away from using either dementia or Alzheimer's as a broad category label. For example, in the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders, commonly referred to as the DSM followed by a number that indicates the edition, the current edition (DSM-5) replaced the label "Dementia, Delirium, Amnestic and Other Cognitive Disorders" with "Neurocognitive Disorders" or NCDs. As we talked, it occurred to me that this is an important change, and one that legal professionals should also embrace more strongly. While short-hand labels can be useful, I think that using dementia alone as a label can invoke a stereotype that has the potential to confuse the public, while also unnecessarily frightening the client or client's family. It can invoke an image of nursing homes or institutionalization, rather than what may be more appropriate, such as supported or guided decision-making or use of alternative decision-makers or agents, especially in early stages of the disorders.
As the DSM-5 further explains:
Although cognitive deficits are present in many if not all mental disorders (e.g., schizophrenia, bipolar disorders), only disorders whose core features are cognitive are included in the NCD category. The NCDs are those in which impaired cognition has not been present since birth or very early life, and thus presents a decline from a previously attained level of functioning.
The NCDs are unique among DSM-5 categories in that these are syndromes for which the underlying pathology, and frequently the etiology as well, can potentially be determined. The various underlying disease entities have all been the subject of extensive research, clinical experience, and expert consensus on diagnostic criteria.... Dementia is subsumed under the newly named entity major neurocognitive disorder, although the term dementia is not precluded from use in the etiological subtypes in which the term is standard. Furthermore, DSM-5 recognizes a less severe level of cognitive impairment, mild neurocognitive disorder, which can also be a focus of care....
Indeed, greater appreciation for mild neurocognitive disorders is important in legal circles, as the changes may often be subtle or difficult to recognize, but still very important when talking about legal capacity or decision-making under the law.
Disability Scoop ran an article recently focusing on aging issues faced by those with special needs. Aging Poses New Challenges For Those With Special Needs explains the issues that will occur as individuals with special needs age, and need different or additional services. "In 1983, the average life expectancy for a person with Down syndrome was 25. Today, it’s 65 to 70, fueled largely by the mastery of a surgical procedure that corrects a heart defect present in 1 out of 2 people with Down syndrome ...." Of course, there are challenges to be overcome, including increasing services and bringing health care providers up to speed. "As the first generation of individuals with disabilities reaches ages not seen before, the medical community is still catching up. Most skilled nursing facilities are still made up of residents without disabilities, so people with disabilities may be better suited to an environment where caregivers are accustomed to taking their special needs into account."
The article highlights the need to be forward-thinking and planning ahead. Not everyone ages the same way at the same speed. The article focuses on how a person with Downs syndrome might experience aging issues. The "interest in caring for people with disabilities who are aging has been of such concern that the [National Down Syndrome Society] compiled an “Aging and Down Syndrome” guide in 2013. Since then, the guide has been requested tens of thousands of times, in both English and Spanish ...."
I've been writing for the Elder Law Prof Blog for almost exactly three years, and it has been a wonderful way to keep up with the vast array of topics that affect "law and aging," Blogging has broadened my horizons, especially with respect to medicine and science. At first I would get excited about each new announcement of a potential drug or treatment that "might" cure Alzheimer's.
Over time, you learn to be more, shall we say, judicious in reporting on the report of cures.
Australian researchers announced last year that they "have come up with a non-invasive ultrasound technology that clears the brain of neurotoxic amyloid plaques - structures that are responsible for memory loss and a decline in cognitive function in Alzheimer’s patients." Their preliminary work is with mice:
Publishing in Science Translational Medicine, the team describes the technique as using a particular type of ultrasound called a focused therapeutic ultrasound, which non-invasively beams sound waves into the brain tissue. By oscillating super-fast, these sound waves are able to gently open up the blood-brain barrier, which is a layer that protects the brain against bacteria, and stimulate the brain’s microglial cells to activate. Microglila cells are basically waste-removal cells, so they’re able to clear out the toxic beta-amyloid clumps that are responsible for the worst symptoms of Alzheimer’s.
The team reports fully restoring the memory function of 75 percent of the mice they tested it on, with zero damage to the surrounding brain tissue. They found that the treated mice displayed improved performance in three memory tasks - a maze, a test to get them to recognise new objects, and one to get them to remember the places they should avoid.
"We’re extremely excited by this innovation of treating Alzheimer’s without using drug therapeutics," one of the team, Jürgen Götz, said in a press release. "The word ‘breakthrough’ is often misused, but in this case I think this really does fundamentally change our understanding of how to treat this disease, and I foresee a great future for this approach."
What has happened since the first news "alert," published in March 2015? Perhaps one of our readers knows the latest on this particular approach, and can bring more light to bear on this breakthrough. For more, read, Science Alert: "New Alzheimer's Treatment Fully Restores Memory Function."Special thanks to GW Law Professor Naomi Cahn for bringing this item to our attention.