Friday, November 8, 2019
Maybe it's just me, but there seems to be a lot of items in the news of late about elder abuse. Here are some new tools to add to your toolbox in the fight against elder abuse. The National Center on Elder Abuse (NCEA) and National Asian Pacific Center on Aging (NAPCA) have released 3 new fact sheets:
- Six Ways to Care for Yourself When Caring for Someone with Dementia
- NAPCA: Emotional Abuse and
- NAPCA: Neglect
All of the fact sheets are available in several languages and are added to an extensive library of fact sheets.
Thursday, October 3, 2019
Who among us doesn't have a smart phone or computer, or even a tablet? They are not only ubiquitous, they are integral, and perhaps essential, to our daily lives. What happens when someone, due to cognitive impairments, is no longer able to use these devices? Kaiser Health News made that the subject of a recent article. The Delicate Issue Of Taking Away A Senior’s Smartphone describes the potential problems
Increasingly, families will encounter similar concerns as older adults become reliant on computers, cellphones and tablets: With cognitive impairment, these devices become difficult to use and, in some cases, problematic.
Computer skills may deteriorate even “before [older adults] misplace keys, forget names or display other more classic signs of early dementia,” Zorowitz wrote recently on a group email list for geriatricians. (He’s based in New York City and senior medical director for Optum Inc., a health services company.)
“Deciding whether to block their access to their bank accounts, stocks and other online resources may present the same ethical dilemmas as taking away their car keys.”
Consider that some folks stay in touch with family and friends through their digital lives. But also consider how scammers can use email to perpetrate a fraud. The article notes a difficulty in using these devices---a difficulty that did not previously exist--may be an indicator of cognitive issues signaling a need for a comprehensive exam of cognition. Family can be helpful, but still realize there are issues
[B]eware of appropriating someone’s passwords and using them to check email or online bank or brokerage accounts. “Without consent, it’s a federal crime to use an individual’s password to access their accounts,” said Catherine Seal, an elder-law attorney at Kirtland & Seal in Colorado Springs, Colo. Ideally, consent should be granted in writing.
The article notes that some with dementia lose interest in their devices, but that is not true for everyone-it depends on the type of cognitive impairment. "More difficult, often, are situations faced by people with frontotemporal dementia (FTD), which affects a person’s judgment, self-awareness and ability to assess risk." The article then profiles the experiences of a noted elder law attorney and friend of mine, whose husband as an FTD diagnosis. She shared the steps she takes to keep her husband safe online.
Read the entire article, especially the last part where personal experiences and tips are shared. It's an important topic-we all need to think about this and plan for the eventuality in case we need to give up our digital word.
October 3, 2019 in Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship, Health Care/Long Term Care, Other | Permalink | Comments (0)
Tuesday, September 24, 2019
"[t]he elder justice legislation found in this document was elicited and finalized from the National Center on Elder Abuse (NCEA) Listserv and independent websites in August 2019. The compilation is intended to reflect highlights across the nation and does not include all legislation related to elder justice. However, updates will be sent quarterly and states are encouraged to send updates on significant legislative action to Ageless Alliance. This document reflects activity in 17 states and highlights at the federal level.
The report divides the information by federal and state, includes a summary for each development as well as a link to view the information online. It also includes a section of pending activity that deserves a look.
This is a great resource and provides students with a quick snapshot of activities across the country.
September 24, 2019 in Consumer Information, Current Affairs, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship, Federal Statutes/Regulations, Health Care/Long Term Care, State Statutes/Regulations | Permalink | Comments (0)
Monday, September 9, 2019
Recently I had the enjoyable experience of being interviewed by Jon Wainwright, Project Manager for the Capital Center for Law and Policy at McGeorge School of Law, University of the Pacific. He asks great questions. His podcast project, CAP-Impact, is a well-developed resource to foster nonpartisan understanding of law and policy, offering a wide array of discussion topics, ranging from the role of lobbyists to science-based support for law reform.
The interview focused on the Guardian Education Project I'm working on currently with community stakeholders, law students (Summer 2019 Team pictured here) and faculty, with financial support from Penn State University. This project is an outgrowth of the Pennsylvania Supreme Court's Elder Law Task Force that recommended changes in procedures and policies governing adult guardianships in Pennsylvania, including better education for new guardians.
For the actual podcast -- about 25 minutes in length -- go to Episode 53: Data Driven Best Practices for Protecting the Elderly with Professor Katherine Pearson.
Don't forget to "like" it -- or whatever is appropriate as support for Jon's podcast project. As he amusingly pointed out, "elder law" isn't usually considered to be a sexy area for researchers, but as he demonstrates, what happens with older adults or others in potential risk of neglect or exploitation, is important!
Wednesday, September 4, 2019
My colleague and dear friend Professor Bauer, sent me the link to a recent op-ed in the New York Times, How Not to Grow Old in America.The assisted living industry is booming, by tapping into the fantasy that we can all be self-sufficient until we die.
Assisted living seems like the solution to everyone’s worries about old age. It’s built on the dream that we can grow old while being self-reliant and live that way until we die. That all you need is a tiny bit of help. That you would never want to be warehoused in a nursing home with round-the-clock caregivers. This is a powerful concept in a country built on independence and self-reliance.
The problem is that for most of us, it’s a lie. And we are all complicit in keeping this dream alive.
The author notes that the ALF industry has a financial incentive to market their product and it's appealing to the kids of those who reside in ALFs. The author writes, "[t]he irony of assisted living is, it’s great if you don’t need too much assistance. If you don’t, the social life, the spalike facilities, the myriad activities and the extensive menus might make assisted living the right choice. But if you have trouble walking or using the bathroom, or have dementia and sometimes wander off, assisting living facilities aren’t the answer, no matter how desperately we wish they were." Further, the author offers data that most of these residents need more care than that provided and argues in favor of regulation, using several actual cases as illustrations to support the call for regulation.
We need to let go of the ideal of being self-sufficient until death. Just as we don’t demand that our toddlers be self-reliant, Americans need to allow the reality of ourselves as dependent in our old age to percolate into our psyches and our nation’s social policies. Unless we face up to the reality of the needs of our aging population, the longevity we as a society have gained is going to be lived out miserably.
September 4, 2019 in Consumer Information, Current Affairs, Dementia/Alzheimer’s, Federal Statutes/Regulations, Health Care/Long Term Care, Housing, Other, Retirement, State Statutes/Regulations | Permalink | Comments (1)
Tuesday, August 27, 2019
We have all had that after lunch afternoon slump where we just want a nap. Do you find yourself napping more than usual? There is a new study on changes to sleep-wake cycles and Alzheimer's. For the non-scientist like me, here's the USA Today story: Napping more? That could be an early symptom of Alzheimer's, new study says.
So wait, don't panic if you are a normal napper. Here's a segment from the article that explains: "People who develop Alzheimer's tend to sleep more during the day, taking naps or feeling drowsy and dosing off. Sometimes, they wake up during the night; that's called fragmented sleep .... If napping is a part of your routine on a regular basis though, you don't need to worry about taking an afternoon snooze, or mid-morning for that matter." So it's all about the change in sleep patterns. Whew.
Here's the abstract for the article about the study.
Sleep-wake disturbances are a common and early feature in Alzheimer's disease (AD). The impact of early tau pathology in wake-promoting neurons (WPNs) remains unclear.
We performed stereology in postmortem brains from AD individuals and healthy controls to identify quantitative differences in morphological metrics in WPNs. Progressive supranuclear palsy (PSP) and corticobasal degeneration were included as disease-specific controls.
The three nuclei studied accumulate considerable amounts of tau inclusions and showed a decrease in neurotransmitter-synthetizing neurons in AD, PSP, and corticobasal degeneration. However, substantial neuronal loss was exclusively found in AD.
WPNs are extremely vulnerable to AD but not to 4 repeat tauopathies. Considering that WPNs are involved early in AD, such degeneration should be included in the models explaining sleep-wake disturbances in AD and considered when designing a clinical intervention. Sparing of WPNs in PSP, a condition featuring hyperinsomnia, suggest that interventions to suppress the arousal system may benefit patients with PSP.
The full study is available here.
Monday, August 26, 2019
This is just a sad story. Margaret Collins resident of a SNF, was abused by those tasked with caring for her, according to an article in Huffington Post. Family Sues After Video Shows Nursing Home Workers Taunting Elderly Dementia Patient summarizes the events. Read the story and watch the video. It can be a good jumping off point for a discussion of the importance of resident rights, and litigation and regulations. Other stories about this are available here, here , here, and here to include a few. Additional info is available on the blog of the attorneys for the plaintiffs.
Thanks to Professor Dick Kaplan for alerting me to the story.
Thursday, August 22, 2019
I suspect every elder law attorney has experienced the Friday Syndrome, where an individual calls the office to seek an emergency appointment because he or she has flown in to visit parents and has discovered new chaos. Perhaps it is a parent who is much more ill than anyone was letting on during phone calls. Perhaps it is discovering a huge pile of unpaid bills with no explanation for why they are overdue. Perhaps it is because the parents have said -- finally -- we need to make a decision and we want to make it today.
There are many variations on the Friday Syndrome, and frequently they involve a common human trait, procrastination, or as my fifth grade teacher called it, "The Scarlett O'Hara Syndrome." I didn't understand what she meant at the time, having not yet seen Gone with the Wind with Scarlett's classic last line, "After all, tomorrow is another day." But I did eventually figure out that my teacher was referring, in less than favorable terms, to my personal approach to homework assignments!
A friend who I often run into during early morning swims, attorney and financial planning advisor Alvin Blitz, shared with me a variation on the theme with his recent column on "Taking Control of Your Destiny." He recounts lessons from his 20 years of travel on behalf of Masonic Villages, as he works with individuals and couples who are thinking about a move to a continuing care retirement community (CCRC). He starts with the premise that while change is a difficult word to swallow, "resisting change usually results in a bad outcome." He describes two scenarios involving couples facing decisions about whether to stay in their own homes.
In the successful scenario, the couple began their reckoning with age while still in their early 70s, making a preliminary decision to downsize and live in a townhouse in a 55 plus retirement community, spending many years enjoying their neighbors and participating in activities geared to their stage in life. "As time went on, the husband was diagnosed with dementia, which required them to make another hard decision," reports Alvin. Eventually they decided that they needed a place where the husband's mental status could be accommodated and the wife would be able to stay active and supported in her new roles with her husband. In the CCRC, they were able to enjoy a "balance of independence and quality of life together while their health problems are addressed, without needing to rely on other individuals to make life decisions for them."
In the less successful scenario, the couple tried to stick in out in their 1950's castle. "Finally, the inevitable happened. the husband had a debilitating stroke. Family members from afar rallied to help, but time took its toll. The wife had medical problems and landed in the hospital. Decisions on care and where to live became limited and were thrust upon them by their circumstances."
Alvin reminds us that making affirmative decisions about housing and care as you age can lead to a much "softer landing" than an alternative that depends on happenstance. He also explains, helpfully, what it might mean to live in a CCRC where there is a clear mission, such as the fraternal mission at Masonic Villages where members of the Masonic organizations (including Eastern Star) can receive continuing compassionate care, even if the individual no longer has assets to pay for care.
For more, read Alvin Blitz' August 2019 article, Taking Control of Your Destiny, from his newsletter, appropriately called "The Blitz."
Wednesday, August 14, 2019
Recently I was talking with a friend about the challenges of family caregiving. She regularly drives many miles to help her mother, who has dementia and is living in another city in her own home. My friend tried inviting her mother to share the daughter's home. To put it mildly, that plan did not work.
Her mother wanted to go back to her own home. Paid in-home caregivers are often essential components of any such plan, and my friend, as an only child, is the person "on call" whenever one of them cancels at the last minute, as well as visiting regularly to plan meals, do shopping, take her mother on outings and the many loving tasks that tend to fall to family members.
My friend says that one of the hardest parts of each visit is that her mother always asks, "when will you be back?" The mother probably isn't intending to put pressure on her daughter, but the pressure is still there, accompanied by the daughter's thought, "Am I doing enough? -- Should I quit my job and move here to be closer to my mother?"
My sister felt this kind of pressure with our mother, even though she spent almost every evening with her, especially during her last year. My sister would finish her long day as a primary school administrator and drive 45 minutes in rush hour traffic to be with Mom at dinner and to visit with her while she watched some television, helping her get ready for bed. And my mother would ask ,"Will I see you tomorrow?" "Of course," was the usual answer. I know my sister felt guilt, even though she was doing everything imaginable to ease the strain for our mother, as her daily life became complicated by deepening dementia.
My father had slightly different questions for me as the "out-of-state" daughter. As soon as I arrived from my latest flight on good ol' Southwest Airlines plus a taxi cab drive, he wanted to know, "When are you leaving?" I would chuckle and say in mock protest, "I just got here; you can't get rid of me yet." (Of course, with dementia, such questions are often asked not just once, but are repeated multiple times in the course of the same hour.) Eventually I realized that what Dad enjoyed the most was the break in the routine from being trapped at home with dementia, as he would usually ride along with whomever was taking me back to the airport. He liked rides in general, but he especially appreciated a car trip with a purpose, a purpose he still understood.
My mother had her own variation for me. She would be startled when she realized I was leaving at the end of a visit, and she would ask with a worried frown, "Will you be back in time for Christmas?" Whether it was the coldest day in January or the hottest summer day in Phoenix she would ask me about my Christmas plans. But, that's not a bad "default" setting for someone with dementia, is it?
I was always able to say, with sincerity, that yes, I would be back in plenty of time for Christmas.
Thursday, August 8, 2019
So we don't be on the cusp of a cure for Alzheimer's but recent stories indicate the medical folks might be getting closer to diagnosing it. First, the New York Times reported that we may soon have a blood test that can diagnose it.
For decades, researchers have sought a blood test for beta amyloid, the protein that is a hallmark of Alzheimer’s disease. Several groups and companies have made progress, and [last]
Thursday, scientists at Washington University in St. Louis reported that they had devised the most sensitive blood test yet.
The test will not be available for clinical use for years, and in any event, amyloid is not a perfect predictor of Alzheimer’s disease: Most symptomless older people with amyloid deposits in their brains will not develop dementia.
But the protein is a significant risk factor, and the new blood test identified patients with amyloid deposits before brain scans did. That will be important to scientists conducting trials of drugs top revent Alzheimer’s. They need to find participants in the earliest stages of the disease.
Since we can't cure it, why do we want to diagnose it?
There is no treatment for Alzheimer’s, and very early diagnosis of any disease can be problematic, since it may not progress. So the first use for this blood test will probably be to screen people for clinical trials of drugs to prevent Alzheimer’s disease, said Dr. Michael Weiner, a neurologist at the University of California, San Francisco.
Ok, a blood test. Pretty easy, not too invasive. Here's another test on the horizon, according to another article, again in the New York Times: A Brain Scan May Predict Alzheimer’s. Should You Get One? There is "criteria developed by the Alzheimer’s Association and nuclear medicine experts, which call for PET scans only in cases of unexplained or unusual symptoms and unclear diagnoses.... But as evidence mounts that brain damage from Alzheimer’s begins years before people develop symptoms, worried patients and their families may start turning to PET scans to learn if they have this biomarker." These tests are expensive and "[a]myloid plaques occur commonly in older people’s brains, but not everyone with amyloid will develop dementia, which probably involves multiple factors. Nor does a negative PET scan mean someone won’t develop dementia."
There's a lot of research being done and we all owe a big thank you to the researchers fighting this and all the other diseases out there that threaten us as we age.
Thursday, July 25, 2019
I've written about this combination of topics before. I can't quite believe I'm doing so again.
My sister and I lost our last parent on Friday. As with our father, who died in 2017, our mother's final months were complicated by dementia. Thankfully her death was gentle -- she just sort of wound down at age 93 (and 9 months -- isn't it amusing how we start counting the months again, as people tend to do when someone is nearing 5 and a half years of age).
Both of our parents had full and fulfilling lives, or as one of our friends commented, "your mother used the full runway." The care team at an assisted living community that specializes in dementia care came to know both of our parents well, and our bereavement was matched by the tears of many of the individual caregivers, each of whom had their own memory or story to share. As several of them noted, in her last days Mom seemed determined to "find" Dad. And, of course, we like to think she did find him.
But one additional complication was that as our mother reached her last hours, one caregiver who has worked for our family for several years, and that caregiver's mother, who has worked her way from CNA to head of a care team, were both coping with their own worries and grief. Both of them are U.S. citizens, but as is often true in the Southwest, a family member, a husband, is not documented. Recently he was picked up by ICE. No one knows quite where he is yet, but the family members know they are likely to face hard choices once he is deported. The family members must decide how and where they will live. My parents' care team -- and by extension the community of residents at the assisted living center -- could lose two more skilled and devoted caregivers. The fabric of aging care grows ever more fragile.
The Global Brain Health Institute is taking applications for those who are interested in becoming an Atlantic Fellow for Equity in Brain Health at the GBHI.
The Atlantic Fellows for Equity in Brain Health program at GBHI is an opportunity to elevate ...r dedication and contributions to brain health. Applicants should demonstrate a commitment to brain health and health care policy, as well as an ability to implement effective interventions in their home community and to become a regional leader in brain health.
GBHI welcomes applications from people living anywhere in the world and working in a variety of professions. Fellows are typically early and mid-career. At least one-half of fellows will come from outside the US and Ireland, with an initial emphasis on Latin America and the Mediterranean.
Thanks to Sarah Hooper, Executive Director & Adjunct Professor of Law, UCSF/UC Hastings Consortium on Law, Science & Health Policy, Policy Director | Medical-Legal Partnership for Seniors, Senior Atlantic Fellow for Health Equity | Atlantic Institute for sending me the announcement.
Friday, July 19, 2019
The Washington Post recently ran an important article, ‘Well, that was a weird moment’ and other signs of dementia family members should watch for. With "[a]bout 5.8 million people in the United States are living with Alzheimer’s and dementia, said Heather Snyder, senior director for medical and scientific operations for the Alzheimer’s Association. The number is expected to rise to 14 million by 2050. Approximately 16 million people are caregivers." So it is important to help caregivers understand what might be normal aging and what might be a red flag.
So what should family members look for? What is attributable to normal aging as opposed to cognitive decline associated with dementia?
It is common to misplace keys or eyeglasses or walk into a room with a task in mind and forget what that is. Those are often attributable to multitasking or stress and are considered part of normal aging.
Here are some things to look for:
• Notes with reminders about simple tasks.
• When neighbors or friends share concern.
• Bills not paid or overpaid.
Physical appearance — someone who was always put together suddenly wears wrinkled or dirty clothing.
• Weight changes.
• Driving issues: fender benders, parking in the wrong spot.
• Any behavior that is out of the ordinary.
• Picking up an object and using it inappropriately.
• Saying things that are inappropriate — “no filter.”
• Changes in speech, personality.
One expert describes what we are looking for like this: "take notice of what she calls “well, that was a weird moment.” For instance,[the expert] was assessing a woman and did not see any deficits — until the woman asked if she could make a phone call and picked up the television remote." The article stresses the importance of planning and being proactive. Read it, so next time you forget where you left your keys, you won't worry as much.
Monday, July 8, 2019
Professor Tara Sklar emailed me to let me know of the publication of two new articles. Her first, Preparing to Age in Place: The Role of Medicaid Waivers in Elder Abuse Prevention appears in 28 Annals of Health Law 195 (2019) and is also available on SSRN.
Here is the abstract
Over the last three decades, there has been a steady movement to increase access to aging in place as the preferred long-term care option across the country. Medicaid has largely led this effort through expansion of state waivers that provide Home and Community-Based Services (HCBS) as an alternative to nursing home care. HCBS include the provision of basic health services, personal care, and assistance with household tasks. At the time of this writing, seven states have explicitly tailored their waivers to support aging in place by offering HCBS solely for older adults, individuals aged 65 and over. However, there is growing concern about aging in place contributing to greater risk for social isolation, and with that increased exposure to elder abuse. Abuse, neglect, and unmet need are highly visible in an institutional setting and can be largely invisible in the home without preventative measures to safeguard against maltreatment. This article examines the seven states with Medicaid HCBS waivers that target older adults, over a 36-year period, starting with the first state in 1982 to 2018. We conducted qualitative analysis with each waiver to explore the presence of safeguards that address risk factors associated with elder abuse. We found three broad categories in caregiver selection, quality assurance, and the complaints process where there are notable variations. Drawing on these findings, we outline features where Medicaid HCBS waivers have the potential to mitigate risk of elder abuse to further support successful aging in place.
The second article, Elderly Gun Ownership and the Wave of State Red Flag Laws: An Unintended Consequence That Could Help Many will be published in the Elder Law Journal. It is currently available on SSRN here.
Here is the abstract
There is rising concern among health professionals and in legal circles to address gun ownership for older adults who display signs of cognitive decline, including dementia. However, elderly gun ownership remains underexamined, partly because incidents of gun violence among the elderly tend to occur in domestic settings and are much less visible than shootings in public areas. In contrast, there is widespread attention to curb mass gun violence through state legislation. Specifically, red flag laws, also known as Extreme Risk Protection Orders, have doubled in 2018 with thirteen states enacting red flag laws and over thirty states having introduced or planning to introduce this legislation. Although red flag laws were not intended to address elderly gun ownership, they uniquely apply where other gun control laws fall short, as red flag laws provide the legal process to temporarily remove access to guns for persons believed to be at an elevated risk of harming themselves or others.
This Article surveys the thirteen states that have enacted red flag laws and analyzes key legislative elements across these states. The state laws have notable variations, including authorized persons who can petition a court for a protection order, standard of proof requirements, and the length of time an order is in effect. These variations have implications for elderly gun owners and their families, particularly in how they relate to the climbing rates of cognitive decline, suicide in late life, and elder abuse. The current wave of red flag laws across the country offer an opportunity to provide greater awareness around elderly gun ownership and prevent crises from becoming tragedies.
I was particularly interested in this second piece, because we recently offered a webinar at Stetson for elder law attorneys on dementia and gun ownership. Information about the webinar and how to order an audio download are available here.
Congrats Professor Sklar and thanks for letting us know about your articles!
July 8, 2019 in Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Federal Statutes/Regulations, Health Care/Long Term Care, Medicaid, Programs/CLEs, State Statutes/Regulations | Permalink | Comments (1)
Thursday, July 4, 2019
Sounds yummy, doesn't it. My dear friend, colleague and frequent blog reader ran across a story about Jelly Drops which are described on the company's website as "Hydrating treats for people with dementia." The article sent by my friend explains that "they’re hydrating treats shaped like raindrops that come in a treat box with a see-through lid. The drops are meant to be appealing to people with dementia, as well as easy to grasp and swallow, and they contain water and electrolytes to help keep elderly patients hydrated." Both the story and the website explain the inventor's motivation for creating the product. The photo on the website shows colorful and yummy looking pieces. Hopefully the product will be available before long. Anyone who has had a relative with hydration issues will understand the value of a product such as this.
Wednesday, July 3, 2019
In May, AARP ran a story about research identifying a new dementia that is not Alzheimer's. Is It Alzheimer's ... or LATE? explains about recent results into research of cases that although thought to be Alzheimer's are not. "[A] report published in the medical journal Brain reveals that in cases involving people older than 80, up to 50 percent may, in fact, be caused by a newly identified form of dementia. It's called LATE, which is short for limbic-predominant age-related TDP-43 encephalopathy....The news, published last month, is being heralded as a potential breakthrough, as identifying a new type of dementia could be critical for targeting research — for both LATE and Alzheimer's. In fact, the report included recommended research guidelines as well as diagnostic criteria for LATE." The disease can mimic some aspects of Alzheimer's, the story explains, and it can only be identified in an autopsy.
Here is the abstract from the study:
We describe a recently recognized disease entity, limbic-predominant age-related TDP-43 encephalopathy (LATE). LATE neuropathological change (LATE-NC) is defined by a stereotypical TDP-43 proteinopathy in older adults, with or without coexisting hippocampal sclerosis pathology. LATE-NC is a common TDP-43 proteinopathy, associated with an amnestic dementia syndrome that mimicked Alzheimer’s-type dementia in retrospective autopsy studies. LATE is distinguished from frontotemporal lobar degeneration with TDP-43 pathology based on its epidemiology (LATE generally affects older subjects), and relatively restricted neuroanatomical distribution of TDP-43 proteinopathy. In community-based autopsy cohorts, ∼25% of brains had sufficient burden of LATE-NC to be associated with discernible cognitive impairment. Many subjects with LATE-NC have comorbid brain pathologies, often including amyloid-β plaques and tauopathy. Given that the ‘oldest-old’ are at greatest risk for LATE-NC, and subjects of advanced age constitute a rapidly growing demographic group in many countries, LATE has an expanding but under-recognized impact on public health. For these reasons, a working group was convened to develop diagnostic criteria for LATE, aiming both to stimulate research and to promote awareness of this pathway to dementia. We report consensus-based recommendations including guidelines for diagnosis and staging of LATE-NC. For routine autopsy workup of LATE-NC, an anatomically-based preliminary staging scheme is proposed with TDP-43 immunohistochemistry on tissue from three brain areas, reflecting a hierarchical pattern of brain involvement: amygdala, hippocampus, and middle frontal gyrus. LATE-NC appears to affect the medial temporal lobe structures preferentially, but other areas also are impacted. Neuroimaging studies demonstrated that subjects with LATE-NC also had atrophy in the medial temporal lobes, frontal cortex, and other brain regions. Genetic studies have thus far indicated five genes with risk alleles for LATE-NC: GRN, TMEM106B, ABCC9, KCNMB2, and APOE. The discovery of these genetic risk variants indicate that LATE shares pathogenetic mechanisms with both frontotemporal lobar degeneration and Alzheimer’s disease, but also suggests disease-specific underlying mechanisms. Large gaps remain in our understanding of LATE. For advances in prevention, diagnosis, and treatment, there is an urgent need for research focused on LATE, including in vitro and animal models. An obstacle to clinical progress is lack of diagnostic tools, such as biofluid or neuroimaging biomarkers, for ante-mortem detection of LATE. Development of a disease biomarker would augment observational studies seeking to further define the risk factors, natural history, and clinical features of LATE, as well as eventual subject recruitment for targeted therapies in clinical trials.
The full article is available here as a pdf.
Monday, June 24, 2019
- Maintain separate financial accounts...
- Keep detailed records»Save receipts for everything you can, and write every expenditure or decision down....
- Only use the persons’ money and property for their benefit....
- File timely reports...
- Regularly talk with the person....
- Spend time together....
- Provide social contact....
- Remember the dignity in choice....
- Safeguard the person’s rights....
- Reassess the Need to Continue the Guardianship....
The explanations for the tips and additional resources are available here.
Monday, June 10, 2019
The Hastings Center has announced a new and very important research project. Dementia and the Ethics of Choosing When to Die will focus on basic issues surrounding an individual's ability to exercise end of life choices when suffering from dementia. As the announcement explains
As the American population ages and dementia is on the rise, The Hastings Center is embarking on pathbreaking research to explore foundational questions associated with the dementia trajectory and the concerns of persons facing this terminal condition. This new research is made possible by a major grant to The Hastings Center from The Robert W. Wilson Charitable Trust as part of its visionary support for the Center’s research and public engagement on ethical challenges facing aging societies.
During the dementia trajectory, a person experiences progressive impairment of cognitive abilities – including memory, problem-solving, and language – as well as changes in behavior and physiological functions. As cognition deteriorates, a person with dementia will need daily assistance and eventually total care, often in an institutional setting, for several years before physical deterioration progresses to death from pneumonia or another condition associated with severe dementia. There are no effective treatments to cure or halt the progression of dementia. Alzheimer’s disease, the most common form, is the sixth leading cause of death in the U.S. Vascular dementia, the second most common form, may develop following stroke.
In 2018, 5.7 million Americans were living with dementia. An estimated 12 million others will be at high risk for developing dementia over the next 30 years as the baby boom generation lives into their 80s and 90s.
In the U.S., the basic legal right to be free of unwanted treatment is long established. People with decision-making capacity have the right to forgo life-sustaining treatment they do not want. People who lack decision-making capacity have the same right through the use of an advance directive or a surrogate decision-maker. However, this longstanding legal framework and ethical consensus does not fully reflect the situation of a person facing dementia if this person has no medical treatments to refuse. Also, the timeframe in which a terminally ill person with decision-making capacity can request and use medical aid-in-dying (MAID), now legal in nine U.S. jurisdictions, does not correspond to the dementia trajectory.
Through literature review and workshops, a Hastings Center work group will conduct an ethical analysis of end-of-life choices in the context of dementia, identifying areas where further research or policymaking is needed. In exploring these emerging issues, the work group will also consider how the field of bioethics should contribute to research, policy solutions, and public understanding to improve the experiences of living with dementia and caring for people with the condition. Products will include a special report, to be published in 2021.
“Population aging raises profound questions about how a society values the experiences of aging and caregiving,” says Berlinger. A separate Wilson Trust grant will build on a recent Hastings Center special report to support events and publications on how policymakers, practitioners, and the public can promote inclusion and equity for older adults and caregivers. Learn more about the dementia project and the aging societies project.
Wednesday, May 29, 2019
A number of cities have undertaken to become dementia-friendly as part of the dementia-friendly America initiative. Denver's efforts are aimed at "improv[ing] the quality of life for people with dementia and their families in the Denver area." The national initiative, started in 2015 is a "grass roots not for profit project [that] is spreading throughout the US with hundreds of cities participating and more joining every month." The community's efforts are unique to the community and fall within these areas "Business, Legal, Financial, Government, Healthcare, Independent Living, Care Communities, Academia, Community Services, and the Faith Community."
Denver's projects range from community education to resource guides, to recognizing businesses that are making efforts and more.
Saturday, May 25, 2019
The National Center for State Courts has announced the release of a new guardianship course, Finding the Right Fit: Decision-Making Supports and Guardianship.
According to the press release, this interactive on-line course covers
• How to support friends and loved ones in making their own choices about their health, finances, and lifestyle.
• Legal options, including powers of attorney and advance directives. • How to become a guardian.
• How a guardian can support a person’s decision-making.
• Identifying and understanding the risk of abuse, neglect, and exploitation that comes with any of the above options.
The course takes about 2 hours to complete and you have to create an account to access it. Check it out!
May 25, 2019 in Advance Directives/End-of-Life, Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Health Care/Long Term Care, Programs/CLEs, Webinars | Permalink | Comments (0)