Monday, April 19, 2021
The National Consumer Coalition for Quality Long Term Care announced the release of a podcast, The Care For Individuals With Dementia. Here's a description of the podcase.
When the needs of residents living with dementia are met, incidences of resident stress are significantly reduced. Practicing person-centered approaches and interventions increase the likelihood that the message being communicated by the resident will be heard and addressed, leading to better outcomes and more satisfaction for the individual. In this episode of the Pursuing Quality Long-Term Care podcast, Dr. Jonathan Evans and Lori Smetanka of Consumer Voice talk about caring for human beings with dementia.
The podcast can be accessed here.
Monday, April 12, 2021
If you haven't seen this yet, check out the new website, Alzheimers.gov. This site compiles a significant amount of great info. As the website explains
Alzheimers.gov is the federal government portal to information and resources on Alzheimer’s disease and related dementias, including Lewy body dementia, frontotemporal disorders, and vascular dementia. Alzheimers.gov is managed by the National Institute on Aging (NIA) at the National Institutes of Health (NIH), a part of the U.S. Department of Health and Human Services (HHS). HHS is the U.S. government’s principal agency for enhancing the health and well-being of all Americans.
. . .
A primary goal of Alzheimers.gov is to connect people to the many federal resources available to educate and support people whose lives are touched by these devastating diseases in their various roles. Whether you are living with dementia, a family member or friend, health care provider or other health care professional, researcher, or advocate, Alzheimers.gov is designed for you.
. . .
Tuesday, March 16, 2021
Check out this new factsheet from the National Center on Elder Abuse, Role of Guardian Standards
in Addressing Elder Abuse. This five page fact sheet answers 16 wide-ranging FAQs and includes resources both within some of the FAQs and at the end of the fact sheet. It's worth checking out!
Thursday, March 4, 2021
Two articles that bear reading, both from the New York Times.
First, an op-ed We Are Going to Keep You Safe, Even if It Kills Your Spirit’ in the New York Times, examining the impact of COVID and isolation on folks with dementia. This is an important read. The article highlights the challenges for those individuals and mask-waring and social distancing, as well as how the disruption of their routines impacts them.
People with dementia “may not adequately comprehend, execute, or recall any of the suggested public health measures,” as the Alzheimer’s Association puts it. Also, it’s not possible to social-distance when you live in a nursing home, as about 15 percent of people with dementia do, and when you need help eating and going to the bathroom.
Even those who stay free of the virus have suffered disproportionately from the disruptions of pandemic life. Dementia responds well to routine: rigid, time-blocked schedules and familiar faces. But the pandemic has shown us, and warned us, how quickly the fragile channels of dementia care — the muddled blend of formal and informal networks that sustain those routines — can collapse under strain.
Second, another New York Times article, People With Dementia Are Twice as Likely to Get Covid, Huge Study Finds
People with dementia had significantly greater risk of contracting the coronavirus, and they were much more likely to be hospitalized and die from it, than people without dementia, a new study of millions of medical records in the United States has found.
Their risk could not be entirely explained by characteristics common to people with dementia that are known risk factors for Covid-19: old age, living in a nursing home and having conditions like obesity, asthma, diabetes and cardiovascular disease. After researchers adjusted for those factors, Americans with dementia were still twice as likely to have gotten Covid-19 as of late last summer.
Friday, January 29, 2021
The ABA Commission on Law and Aging has published vol. 42, Issue 3 (Jan.-Feb.2021), its current issue of BIOFOCAL. The issue contains several articles, including a couple on Social Security Rep Payees, with the lead article, How Does Social Security Select Representative Payees for Adults? Results of an Independent Research Study
Almost four million older adults and adults with disabilities have representative payees appointed by the Social Security Administration (SSA) to manage their Social Security or SSI payments. How does SSA determine if a payee is needed? How do SSA staff select a payee? How do they choose an individual versus an organizational payee? What are the considerations in long-term care residential facilities serving as the payee? What about guardians serving as payee? How and to what extent does SSA maintain consistency in payee determinations?
In 2018, the Social Security Advisory Board (SSAB) charged researchers at Virginia Tech and the ABA Commission on Law and Aging to conduct an independent study focusing on these compelling questions. The study team addressed SSA processes for selection of payees for adults. The underlying assumption was that a better understanding of selection practices ultimately could lead to process improvements, as well as a reduction in the potential for misuse and abuse of beneficiary funds while maintaining beneficiary rights.
A pdf of the full issue is available here.
Monday, January 11, 2021
The American Bar Association Commission on Law & Aging has released its 2020 summary of guardianship legislation. The summary, Directions of Reform: 2020 Adult Guardianship Legislation Summary, American Bar Association Commission on Law and Aging is available .here.
The summary is divided into the following: pre-adjudication issues, multi-jurisdictional issues, guardian selection, guardian actions, fees, rights of the individual, capacity matters, guardian & fiduciary misconduct, and post-adjudication/monitoring matters. The summary includes a chart at the end for a quick reference. The link to the archives for prior year summaries is available here.
Thursday, December 24, 2020
A couple of days ago, the Washington Post ran an uplifting article about a hug room in a SNF. After months of isolation, a ‘hug room’ lets Italian nursing home residents touch family for the first time tells us about "a 7-foot-tall piece of plexiglass, molded into a three-sided booth. It had four cutout holes, where protective sleeves would be added for arms. It was known, in the strange language of the pandemic, as a “hug room,” but it was less a room than a barrier: residents on one side, relatives on the other." Although not as ideal as living in a COVID free world (or at least a vaccinated one), this "plexiglass represented the sort of modest step some nursing homes are now taking in a year when they have faced excruciating decisions about how protective to be and how best to reduce their risks." The article references similar efforts taken by other SNFs.
A little bit of good news, then, for Christmas.
PPS-remember to thank first responders, health care professionals and all who keep us safe and going through this trying time. Stay safe and stay healthy.
Tuesday, December 22, 2020
It's going to be some time before we see good news stories about residents of SNFs---although the vaccination of SNF residents is good news. So here are several recent articles regarding SNFS and COVID-but be forewarned, these first two are not easy to read.
There are just no words....
(Thanks to Morris Klein and Professor Bauer for sending me the link to this article).
This last article brings up some interesting issues for class discussion-such as consent, refusal of consent, and inability to consent.
Please everyone-stay safe and remember to thank our first responders, health care professionals and essential workers. And let us never forget those we have lost to this pandemic.
December 22, 2020 in Advance Directives/End-of-Life, Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Federal Statutes/Regulations, Health Care/Long Term Care | Permalink | Comments (1)
Monday, December 21, 2020
JAMA network published this article, What Caring for My Aging Parents Taught Me That Medical Education Did Not is a first person account by the author of what he went through with his parents, and what he learned from the experience.
Slowly, however, things started to change. My parents seemed to have increasing difficulty staying organized. Instead of me calling them, they began calling me—at first weekly, then daily, and then multiple times per day. My father’s blood pressure was out of control, and he could not tell me what medications he was taking. My mother’s scoliosis, a problem since adolescence, now caused her to have significant difficulty walking. She looked thinner each time I saw her. Their physicians seemed not to be communicating well with each other. Finding their cell phones became a daily project.
Then came the identity theft: strange addresses on their credit card statements, charges to their accounts from Florida businesses when they were not living there, and even their telephone being answered by the identity thief himself. Managing these problems became my part-time job. Since credit card fraud departments are typically open only during business hours, I would sometimes spend afternoon hours on hold from my hospital office, waiting for someone to pick up, rather than charting, talking to a consultant, or doing research.
The move from their home of 30 years was the next step. They simply could not manage the house. Once spotlessly clean, it was now increasingly cluttered with tchotchkes from circa 1993. The garden was overgrown, the dishes dirty. After work, I typically spent an hour every day helping organize, donate, and throw away their belongings, so that we could put the house up for sale. Thankfully, the renovations went smoothly and the house sold quickly. Although not without drama, my parents moved to a retirement facility nearby.
The author created a list of what he wished he had known as he cared for his parents:
If you have the feeling that something may be an issue for your aging parents, it is almost definitely an issue.
- Make sure you know about all your parents’ financial accounts.
- You (and they) may need emotional support from people you would not expect.
- Advocate for your parents in the best way you can, but do not expect everything to be cut and dried.
- Use technology to help you (and them).
- Do not expect too much from the medical system.
- You must have the difficult conversations if the physicians will not.
- You may need to get them daily help.
- Do not forget to keep some perspective and occasionally laugh.
Great article! Thanks to Amos Goodall, Esq. for sending me the link.
Sunday, December 20, 2020
GeriPal, a geriatrics and palliative care blog, has released a podcast, Guardianship and End-of-Life Decision Making: A Podcast with Andy Cohen and Liz Dzeng, discussing a recent study led by Dr. Cohen.
The big surprise finding of this study was veterans who were nursing home residents aged 65 and older with moderate to severe dementia and who had a professional guardian were no more likely to receive high‐intensity treatments than the same population who died with decision makers who were not professional guardians. We talk to Andy about his study, potential reasons behind the study, and what, if anything, we should do differently knowing these results. We also talk to Liz about whether substituted judgement is really all that it’s cracked up to be.
The article, Guardianship and End‐of‐Life Care for Veterans with Dementia in Nursing Homes and editorial, We Need a Paradigm Shift Around End‐of‐Life Decision Making, are available here and here.
December 20, 2020 in Advance Directives/End-of-Life, Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship, Health Care/Long Term Care | Permalink | Comments (0)
Monday, December 7, 2020
JAMA Internal Medicine published the results of a recent study, Financial Presentation of Alzheimer Disease and Related Dementias.
Here are the key points from the study:
Question Are Alzheimer disease and related dementias (ADRD) associated with adverse financial outcomes in the years before and after diagnosis?
Findings In this cohort study of 81 364 Medicare beneficiaries living in single-person households, those with ADRD were more likely to miss bill payments up to 6 years prior to diagnosis and started to develop subprime credit scores 2.5 years prior to diagnosis compared with those never diagnosed. These negative financial outcomes persisted after ADRD diagnosis, accounted for 10% to 15% of missed payments in our sample, and were more prevalent in census tracts with less college education.
Meaning Alzheimer disease and related dementias were associated with adverse financial events starting years prior to clinical diagnosis.
The full article is available here.
Friday, December 4, 2020
The Tampa Bay Times ran a profile of a local long term care facility that experienced a significant COVID outbreak last spring. Death at Freedom Square is an in-depth story about the people who live and work at Freedom Square and the spread of COVID within that facility. The article provides detailed reporting (In fact the TBT refers to this story as a "project"). The article is written in a way that tells the story of the people impacted, which makes it a compelling--- and sad---- read.
Nine months into the pandemic, the virus has killed more than 19,000 Floridians. About 40 percent of the deaths have been among senior care residents. In Pinellas County alone, more than 2 out of 3 coronavirus deaths are connected to nursing homes and assisted living centers.
Freedom Square, a 15-acre retirement complex built around a town square and a gazebo, was the early epicenter in Tampa Bay.
Of course, we all know that this is not the only facility that experienced a COVID outbreak, whether inside Florida or in other states. The human interest angle makes this a compelling read, but it also includes important information about the Florida responses and about the corporate structure for this facility.
The article is as gripping as it is saddening; the reporters use of the human interest angle helps remind us that we aren't talking about numbers---we are talking about people.
December 4, 2020 in Consumer Information, Current Affairs, Dementia/Alzheimer’s, Federal Statutes/Regulations, Health Care/Long Term Care, Medicaid, Medicare, State Statutes/Regulations, Statistics | Permalink | Comments (0)
Monday, November 30, 2020
Last week with Thanksgiving, some families took their elders from the SNFs to be home for the holiday. But if grandma then goes back to the SNF, is she bringing a hitchhiker with her (COVID). The Tampa Bay Times discussed this in their article a few days before Thanksgiving, Residents may leave Florida facilities for Thanksgiving, could bring coronavirus back reminds us that "[a]state executive order issued in October mandates that facilities allow residents to visit their families’ homes. Experts and advocates worry that the state has not simultaneously put in place more safety protocols." Since the state doesn't require testing of residents, so as residents return to facilities and aren't tested, we just don't know how this is going to play out. "[T]he Florida Health Care Association ... reminded its member facilities that families should take coronavirus precautions if they bring their loved ones home ... [and while] not required, some facilities may test residents upon their return or isolate them,... and all homes will screen residents for coronavirus symptoms and potential exposure."
And on a somewhat related note, the following story from Canada examines the situation of elders who were taken home at the beginning of the pandemic. Pulled from care homes during pandemic, these seniors thrived — highlighting 'urgent' need for change: expert,
notes that some elders have improved when taken home, but the decision to do so has many things to consider, such as the family members' ability to provide the needed care. Two of the folks interviewed for the story express frustration with what they see as elected officials' failure to resolve the problems in long-term care.
Thanks to my dear friend and colleague Professor Feeley for sending me the link to the second story.
Tuesday, November 17, 2020
It's hard to keep track of all the articles coming out, most of which are about COVID and SNFs. There have been so many recently, I decided to just list them here.
Judge says care home residents in England are legally allowed visitors (Nov. 3, 2020) (Thanks to my dear friend Professor Feeley for sending this to me)
40 Dead, Now 40 Laid Off: Inside a Nursing Home in Crisis (Oct. 29, 2020).
and finally, but maybe most significantly, this obituary, Carter Williams, Who Unshackled Nursing Home Residents, Dies at 97 (Oct. 5, 2020). Thank you Ms. Williams!
With the COVID numbers skyrocketing, I expect we will see more of these stories-and restrictions on visitation that have been previously lifted, are likely going to be imposed again.
November 17, 2020 in Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Federal Statutes/Regulations, Health Care/Long Term Care, State Statutes/Regulations, Statistics | Permalink | Comments (0)
Monday, November 16, 2020
My friend Morris Klein sent me this article a couple weeks ago (thanks Morris). Good urban design can make Greater Washington more dementia-friendly explains that "Greater Washington’s population of older adults is growing. So too is the number of people with dementia and other age-related memory loss. That makes designing for dementia one of the key ways we can make our urban spaces work for the people using them." The article explains that many folks with dementia live within the community rather than in a facility. As a result, city planners need to consider this when updating their urban planning and their zoning ordinances.
[M]ost people with memory loss age in their communities, cared for by family members who do not receive enough support. Those in nursing homes often face abusive, unhealthy, or unhappy environments. Thousands of people with dementia and memory loss died from the coronavirus pandemic in nursing homes. As a result of these trends, more families are now seeking to keep loved ones with dementia in the community.
But public spaces are often unusable by people with cognitive abilities affected by dementia. People with dementia often feel overwhelmed, get lost, have trouble, or face dangerous situations while trying to navigate cities. Skills that we take for granted are difficult for older adults with dementia, including the ability to find alternative routes, filter out extraneous sensory information, or remember directions. Much of this is unintentional: designers and planners are often unaware of these needs. That intent, however, does not change the impact.
The article discusses various suggestions and techniques, such as wayfinding, signage and invigoratingly-designed spaces. Of course, safety parking, and types of seating must also be considered. Most importantly is "listening to people with dementia, who should be engaged in design processes in some way, even if just in informal conversations. Planners and designers can learn from social programs for older adults with memory loss."
Wednesday, October 28, 2020
COVID-19 has hit residents of nursing homes hard. But it’s also hit hard those with dementia. Dementia deaths rise during the summer of COVID, leading to concern was published recently in The Conversation. The article opens with this sobering observation
Deaths from dementia during the summer of 2020 are nearly 20% higher than the number of dementia-related deaths during that time in previous years, and experts don’t yet know why. An estimated 61,000 people have died from dementia, which is 11,000 more than usual within that period.
“There’s something wrong, there’s something going on and it needs to be sorted out,” Robert Anderson, chief of mortality statistics at the U.S. Centers for Disease Control and Prevention, said in a recent interview with Politico. “This is highly unusual.”
The author analyzes the four factors that may have played a role in the deaths of these individuals. Those include social isolation (“[s]ocial isolation, which essentially is little or no contact with others, is the last thing seniors with dementia need. But it’s what many have received, as caregivers are forced to limit visits during the pandemic”), caregiver burnout (“during COVID-19, caregivers have been isolated too. What help they had from the outside is now probably gone. Burnout becomes more likely”), decreased access to medical care (“[f]or dementia patients, accessing care may even be more problematic. Telemedicine, often an option for other patients, may not be manageable for those with dementia”), and staying home or using the health care offered by the facility, when they’ve decided the risk of leaving the house is greater than the medical issue (“a good example of something we doctors call goal-concordant care: when doctors understand a patient’s health goals, and then provide them with the best they can within the scope of those goals”).
The author concludes with some advice: check on the folks with dementia whom you know, check in on the caregiver…and be a good listener, and talk to your family about your wishes if this becomes your future.
Thanks to Professor Naomi Cahn for sending the link to this article.
Tuesday, October 27, 2020
NPR aired a timely podcast on nursing homes seeking federal government funding do to the increased number of COVID cases. For-Profit Nursing Homes' Pleas For Government Money Brings Scrutiny explains that
Nursing homes have been overwhelmed by the coronavirus. Residents account for more than a quarter of all COVID-19 deaths nationwide. The industry says that facilities have also been overwhelmed by costs, and they're asking for billions in aid from the federal government… But recent studies suggest that for-profit ownership may have endangered residents by skimping on care, while funneling cash to owners and investors.
The article highlights some facilities that have had issues and focuses on the for-profit business model. “Studies looking at thousands of nursing homes across the country have connected for-profit ownership and low nurse staffing to increased coronavirus infections.
The nursing home industry rejects those studies and promotes earlier research that concluded that outbreaks are largely caused by community spread of COVID-19 outside of nursing homes.” With residency numbers declining but costs increasing, nursing homes are facing another hurdle. And they are seeking money from the feds. “Nursing homes have already received about $7.5 billion from federal coronavirus relief legislation and billions more in Paycheck Protection funds. Now the industry is asking for another $100 billion for all health care providers, with a "significant" amount of that going to nursing homes.”
You can listen to the accompanying podcast by clicking here to access it.
Monday, October 26, 2020
Scientific American ran an article, Helping Alzheimer’s Patients Bring Back Memories Targeting recall processes could let people who are in the disease’s early stages access what they currently can’t remember.
People of all ages have moments when it feels like we’re on the edge of recalling something but can’t quite do it—where we parked our car or left our phone, for example, or what name goes with that familiar face. It’s extremely frustrating in the moment, but for most of us, we can usually remember if we try. For patients with Alzheimer’s, Huntington’s and many other dementia-causing diseases, however, memory loss is much more profound.
The article discusses two theories regarding memory loss: “one is that these patients can’t store new information properly in the brain; the other is that their ability to recall stored information has been weakened.” The author discusses his research and how that led him to support the “weakened memory recall idea.”
The author uses great analogies to help the reader understand the science of the disease and the work. The author notes that there is a lot yet to know, “but what’s clear is that we need to take advantage of targeting recall to help treat patients in the near future.”
Thanks to my colleague and friend, Professor Feeley, for sending me this article.
Friday, October 23, 2020
Ever find yourself saying, "what was their name again? It's on the tip of my tongue." Then do you worry that you have dementia because you can't remember the word? The Washington Post tackled this in a recent article, Dementia is more than occasionally forgetting a name or a word.
First, it is important to know that dementia cannot be diagnosed from afar or by someone who is not a doctor. A person needs a detailed doctor’s exam for a diagnosis. Sometimes, brain imaging is required.
And, forgetting an occasional word — or even where you put your keys — does not mean a person has dementia. There are different types of memory loss and they can have different causes, such as other medical conditions, falls or even medication, including herbals, supplements and anything over-the-counter.
There is normal age-related memory loss, and the article emphasizes that such memory loss is normal! Let’s distinguish from memory loss that is not normal---“forgetting the name of someone you see every day; forgetting how to get to a place you visit frequently; or having problems with your activities of daily living, like eating, dressing and hygiene….When you have troubles with memory — but they don’t interfere with your daily activities — this is called mild cognitive impairment. Your primary care doctor can diagnose it. But sometimes it gets worse, so your doctor should follow you closely if you have mild cognitive impairment.”
The article offers the CDC's quick bullet-point list of warning signs for specific domains when forgetfulness is more than just normal age-related memory loss:
- Reasoning, judgment and problem solving.
- Visual perception beyond typical age-related changes in vision.
Although Alzheimer’s is the dementia that most often comes to mind, the article reminds us that there are several types of dementia. The article provides a good overview of the issues that arise from dementia and concludes with this thought-provoking observation:
But even more frightening is unrecognized or unacknowledged dementia. You must, openly and honestly, discuss changes you notice in your memory or thinking with your doctor. It’s the first step toward figuring out what is happening and making sure your health is the best it can be.
And, as with any disease or disease group, dementia is not a “character flaw,” and the term should not be used to criticize a person. Dementia is a serious medical diagnosis — ask those who have it, the loved ones who care for them or any of us who treat them.
Monday, October 19, 2020
The New York Times reported recently on a hot topic with the upcoming election: whether an individual with dementia can still vote. Having Dementia Doesn’t Mean You Can’t Vote "tells us that for some, voting is still possible. The key, "he ability to express a preference," citing to a new report from experts on this topic. Even though the person has the right, the exercise of that right may be challenging: "[v]oting can become challenging for many older citizens, who may struggle to reach polling places, stand in lines, use computerized voting machines or read ballots printed in small type."
Further, the article notes, many believe they cannot help the voter in casting the ballot. "A diagnosis of cognitive impairment does not bar someone from voting. Voters need pass no cognitive tests. They don’t have to be able to name the candidates or explain the issues. If they need help reading or physically marking the ballot, they can be assisted, either at the polls or with mail-in ballots. In some states, even people under court-appointed guardianship don’t lose their voting rights."
So you want to help. What do you do? "If you are considering helping someone with dementia to participate in an election, and they have registered to vote, in most cases there are only two real guidelines to keep in mind.
- "After reminding the person that Election Day is nearing, ask whether he or she would like to vote." If the answer is no, you are done.
- If the answer is yes, then "you may read the voter the ballot choices, if he or she cannot read them, but cannot provide additional information or interpretation, although discussions before voting begins are permitted. “Ask them their choices and see if they answer,” ... “If they do, they vote.”
Even in normal times, there are challenges for those who need help with voting, for examples residents of SNFs. In the time of COVID, the challenges are even greater. The article is really interesting and I encourage you to read it. The study findings can be accessed here.