Tuesday, February 13, 2018

A Seldom Discussed Legal Issue? The Problem of Smokers with Dementia

My family has been struggling with the issue of what to do about the increasing safety risk of a family member who, at age 90+, is still a smoker, but now also a smoker with dementia. Our family has long since given up on the direct health risk of smoking for the individual.  But the evidence of a greater risk is everywhere:  small burn holes in the carpets, on the arms of a favorite chair, and even melted spots on the linoleum on the kitchen floor beneath the smoker's chair.  The latest sign of a serious problem frightened us the most -- a burned hole in the sheets of the bed.  Before dementia this individual never smoked in bed; but with dementia, plus problems walking and sitting in a chair, she began to insist on her "first" morning cigarette while still in bed.  The situation requires constant monitoring -- but even that is a challenge as it can be hard to find companions who can tolerate this level of smoking.  

There is plenty of evidence the risk is more than just to the smoker's health.  See, for example, the news link below for a report on a fire that caused the death of the elderly smoker and injuries to the firefighters. 

For discussions of approaches to managing, if not stopping the elder's smoking, see also Caring.com on "Should I Take Cigarettes Away From My Mother, Who has Alzheimer's?  One person commenting on the column, describes the situation with his own mother as a "dreadful problem. . . . It is the most difficult situation I have ever faced with her and there is no easy solution." Another person provided the following history:

The problem has miraculously resolved itself with the help of some very skilled caregivers. I had to move my [92 year old] mother to a Memory Unit in an Assisted Living Facility. They agreed that she could have 4 cigarettes per day under their supervision. They made an exception for her. For the first several months she asked repeatedly all day long for a cigarette. They patiently distracted her by redirecting her attention or promising a cigarette after dinner, whatever. It didn't stop her begging for a smoke over and over but now, at age 94 and with advancing dementia, she has almost forgotten that she's a smoker. 

That's an important caveat -- with dementia, at 94 -- she has "almost forgotten that she's a smoker." 

February 13, 2018 in Cognitive Impairment, Current Affairs, Dementia/Alzheimer’s, Ethical Issues, Health Care/Long Term Care | Permalink | Comments (0)

Monday, February 12, 2018

Kaiser Health Offers Q & A on "Living Well with Dementia" on Tuesday, Feb 13

Sorry for the late news but Kaiser Health News is offering a live discussion via Facebook Live! and Twitter on "Living Well with Dementia" on Tuesday, February 13, from 12:30 to 2:00 p.m. Eastern Time.

Hear are details:  

Join Kaiser Health News on Tuesday, Feb. 13, from 12:30 to 2:00 p.m. ET for an informative and important discussion about improving care and services for people with dementia and supporting their caregivers. It’s an opportunity to learn from experts in the field about the challenges and difficulties facing the patient, the caregiver, the community and policymakers. Topics will include understanding the stages of dementia from a medical, social, psychological and environmental perspective (it’s not just memory loss); how to find help; how to manage difficult behaviors; and understanding medications for people with dementia. 

Kaiser Health News’ “Navigating Aging” columnist Judith Graham will moderate a discussion with you and a panel of experts as we explore this issue.

Our panelists are:

  • Nancy A. Hodgson, Ph.D., RN, FAAN, University of Pennsylvania, an expert on dementia care and end-of-life care for people with dementia; 
  • Helen Kales, M.D., University of Michigan, a geriatric psychiatrist and expert on dementia care and mental health issues; 
  • Yvonne Latty, BFA, MA, a journalist and professor, who is dealing with her mother’s Alzheimer’s;
  • Katie Maslow, MSW, Gerontological Society of America, an expert on improving care for people with dementia and supporting their caregivers; and
  • Mary L. Radnofsky, Ph.D., a former professor who lives independently since being diagnosed twelve years ago with dementia and is an advocate for people with dementia.

February 12, 2018 in Advance Directives/End-of-Life, Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Ethical Issues, Science | Permalink | Comments (0)

Wednesday, February 7, 2018

Webinar on Multidisciplinary Teams

Mark your calendars for this webinar from the Elder Justice Initiative scheduled for February 22, 2018 at 2 est, on MDT Member Recruitment and Retention: Building Trust and Traction  Here are the learning objectives from the website

Learning Objectives:

  • Understanding the best practices for recruitment and ongoing engagement of team members.
  • Exploring real-world examples of relationship- and trust-building strategies.
  • Discovering new MDT Guide and Toolkit documents, including a recruitment letter and statement of need.

 

 

Click here to register.

February 7, 2018 in Consumer Information, Crimes, Current Affairs, Elder Abuse/Guardianship/Conservatorship, Federal Statutes/Regulations, Programs/CLEs, Webinars | Permalink | Comments (0)

Wednesday, January 31, 2018

Rising Health Care Costs to Outpace COLAs?

The Washington Post ran an article looking at the longer-term impact of the increasing costs of health care on any COLAs from SSA. Out-of-pocket health-care costs likely to take half of Social Security income by 2030, analysis shows discusses a recent Kaiser Family Foundation which "found out-of-pocket health-care costs for Medicare beneficiaries are likely to take up half of their average Social Security income by 2030."  The KFF report, Medicare Beneficiaries’ Out-of-Pocket Health Care Spending as a Share of Income Now and Projections for the Future was published January 26, 2018. Here is the executive summary

Medicare helps pay for the health care needs of 59 million people, including adults ages 65 and over and younger adults with permanent disabilities. Even so, many people on Medicare incur relatively high out-of-pocket costs for their health care, including premiums, deductibles, cost sharing for Medicare-covered services, as well as spending on services not covered by Medicare, such as long-term services and supports and dental care. The financial burden of health care can be especially large for some beneficiaries, particularly those with modest incomes and significant medical needs. Understanding the magnitude of beneficiaries’ current spending burden, and the extent to which it can be expected to grow over time, relative to income, provides useful context for assessing the implications of potential changes to Medicare or Medicaid that could shift additional costs onto older adults and younger people with Medicare.

In this report, we assess the current and projected out-of-pocket health care spending burden among Medicare beneficiaries using two approaches. First, we analyze average total per capita out-of-pocket health care spending as a share of average per capita Social Security income, building upon the analysis conducted annually by the Medicare Trustees. Second, we estimate the median ratio of total per capita out-of-pocket spending to per capita total income, an approach that addresses the distortion of average estimates by outlier values for spending and income. Under both approaches, we use a broad measure of Medicare beneficiaries’ total out-of-pocket spending that includes spending on health insurance premiums, cost sharing for Medicare-covered services, and costs for services not covered by Medicare, such as dental and long-term care. We present estimates of the out-of-pocket spending burden for Medicare beneficiaries overall, and by demographic, socioeconomic, and health status measures, for 2013 and projections for 2030, in constant 2016 dollars.

A pdf of the report is available here.

January 31, 2018 in Consumer Information, Current Affairs, Federal Statutes/Regulations, Health Care/Long Term Care, Medicare, Retirement, Social Security | Permalink | Comments (1)

Tuesday, January 30, 2018

Want to Live Longer? If You Can Afford It, Retire Early But Do Stuff!

The New York Times ran an article about recent research regarding the correlation between early retirement and longevity.  The Connection Between Retiring Early and Living Longer  looks at a number of studies here and abroad.

That retirement promotes health and prolongs life isn’t obvious. After all, work provides income and, for some, health insurance — both helpful for maintenance of well-being. It also can provide purpose and camaraderie. Evidence is mounting that loneliness and social isolation are linked to illness, cognitive decline and death. One study of American retirees found them less likely to be lonely or depressed.      

For some, retirement doesn't have a healthy impact.  Developing, or continuing, good eating habits and exercise are critical.  "Retirees are more likely to exercise, and those who do are better off for it. One study found retirees get more sleep and spend more time doing household work and gardening — both of which are more active than a desk job. Another study found that better health in retirement may be because of the reduced likelihood of smoking."  Those are all good things, but for many, retirement is outside of their financial ability. "[A]ccording to a recent national survey by the Board of Governors of the Federal Reserve System, many Americans don’t have the resources to retire. About 20 percent of Americans over 44 years old have no retirement savings. Half of Americans are at risk of being unable to maintain their standard of living in retirement. If you want to retire, whether for health benefits or otherwise, you’ll have to start preparing when you’re still young."

January 30, 2018 in Consumer Information, Current Affairs, Federal Statutes/Regulations, Health Care/Long Term Care, Other, Retirement | Permalink | Comments (0)

The Challenges Facing Sellers of LTC Policies

My co-blogger buddy, Professor Pearson, recently posted about the costs of  long term care insurance policies. A new article  in Bloomberg View examined the implications of the losses posted by a division within GE for long term care insurance policies, What’s Bad for GE Will Be Worse for America. The article notes the implications of the division's losses beyond the company: "it’s also a harbinger of a much greater challenge for society at large: paying to care for the growing number of Americans who can’t look after themselves." The article notes that increased life expectancies contributed to the problems but it's important to look beyond why a particular company has issues. Instead the article offer that paying for long term care is not a problem to be solved just by the insurance companies.

"By 2050, the U.S. will have almost 90 million people aged 65 and over, and more than half will need long-term care at some point. Yet only a sliver of that group can afford the premiums insurers require. As of 2015, private insurance covered less than 10 percent of U.S. spending on long-term care -- and the private market has been shrinking."

We all know there is no easy answer on what we should do in the US regarding long term care. I thought this paragraph very compelling

The challenge is to design a safety net that will deliver long-term care when it’s needed -- without making people destitute first, yet without burdening taxpayers unduly. This isn’t only a matter of compassion: There’s a strong economic argument as well. The cost of long-term care weighs heavily on the economy, as family members step in to do what the health-care system does not. The lifetime cost to caregivers in forgone wages and other losses has been put at $3 trillion.

 

January 30, 2018 in Consumer Information, Current Affairs, Health Care/Long Term Care | Permalink

Monday, January 29, 2018

Learn the SSI Basics!

Justice in Aging has announced a free webinar on February 22, 2018 at 2 est on SSI Basics.  The announcement explains the webinar:

Supplemental Security Income (SSI) is a critical safety net program administered by the Social Security Administration that provides a very basic income to older adults and people with disabilities with no or very limited other income and resources. This webinar is designed for legal services and other advocates who are just getting started in the field and others who want to learn more about the essentials of the program.

This webinar describes the SSI program, discusses the basic rules of eligibility and how benefits are calculated, and offers useful resources for obtaining additional information. 

Click here to register for the webinar.  Study ahead of the webinar by reading Justice in Aging's fact sheet on SSI.

January 29, 2018 in Consumer Information, Current Affairs, Federal Statutes/Regulations, Webinars | Permalink | Comments (0)

Friday, January 26, 2018

New Mexico Legislature Considers Comprehensive Reform of Guardianship Laws, Following Fraud & Embezzlement Scandals

In a bipartisan effort, two New Mexico state senators have introduced Senate Bill 19 -- some 187 pages in length -- in an effort to completely overhaul the state's laws governing guardianships in New Mexico.  The proposed changes, which largely track the Uniform Law Commission's recommendations for "Guardianship, Conservatorship and Other Protective Arrangements," will make such proceedings open to the public and require more notification of family members about the process.  The reform follows high-profile scandals involving two companies that are alleged to have "embezzled millions of dollars of client funds," while appointed-guardians also sometimes restricted family access to their wards.

Hearings on the bill began on January 25, 2018, during the regular 30-day session of the legislature.  From the Albuquerque Journal's coverage on the reforms:

Under the bill pending at the Roundhouse, legal guardians would not be able to bar visitors – both in person and via letters and emails – unless they could show the visit would pose significant risk to the individual or if authorized to do so by a court order.

 

[State Senator and Co-Sponsor of SB 19 Jim White] said the legislation does not call for any additional funding to be appropriated, though it could shift some money from the state guardianship commission to the courts for administrative duties. His bill is the only bill filed so far on the issue of guardianships, though others could be introduced in the coming weeks.

 

Meanwhile, the proposed law would also permit bonds to be required of conservators – a protection already proposed by the New Mexico guardianship commission and recently put into place by district judges in Albuquerque.

For more on the criminal charges filed against executives at Ayudando Gaurdians Inc. and Desert State Life Management, read Who Guards the Guardians? by Colleen Heild. 

January 26, 2018 in Cognitive Impairment, Consumer Information, Crimes, Current Affairs, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship, Estates and Trusts, Ethical Issues, Property Management, State Cases, State Statutes/Regulations | Permalink | Comments (0)

Thursday, January 25, 2018

What Does An Alzheimer's Patient Look Like? She Looks LIke All of Us

Kaiser Health News ran a very interesting story, Postcard From California: Alzheimer’s ‘Looks Like Me, It Looks Like You’. The article opens with the story of an attorney who has early onset Alzheimer's who recounts her experiences as part of a panel discussion.  "Sponsored by Northern California and Northern Nevada Chapter of the Alzheimer’s Association, the event was part of an initiative to highlight the disease’s impact on women, who account for two-thirds of people living with Alzheimer’s and two-thirds of those caring for them... About 630,000 people have Alzheimer’s disease in California, and women in their 60s have a 1 in 6 chance of developing the disease — almost twice as high as the risk of developing breast cancer."  One of the most compelling quotes in this story came from a panelist who said this "'“Alzheimer’s looks like me, it looks like you, it looks like everyone,'" [she] ...  said." The story closes with advice from one of the panelists about the importance of doing what makes one happy.  Good advice.

January 25, 2018 in Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Health Care/Long Term Care, Programs/CLEs | Permalink | Comments (0)

Netherlands: Examining Physician's Actions in Euthanasia Death of 74-Year Old Woman with Dementia

As my blogging colleague Becky Morgan has highlighted in two of her posts this week, about a February conference at Hastings and recent proposals for "dementia advance directives," end-of-life decisions are increasingly high-profile topics for those working in law, medicine and ethics.  Add to this the case under review in the Netherlands, where a physician described as a "nursing home doctor" performed euthanasia for a 74-year old woman with "severe dementia." A Dutch law legalizing euthanasia, that came into effect in 2002 and that was recently the subject of new "guidelines for performing euthanasia on people with severe dementia," is also under review.  From Dutch News in September 2017:

The case centres on a 74-year-old woman, who was diagnosed with dementia five years ago. At the time she completed a living will, saying she did not want to go into a home and that she wished to die when she considered the time was right. After her condition deteriorated, she was placed in a nursing home where she became fearful and angry and took to wandering through the corridors at night.The nursing home doctor reviewed her case and decided that the woman was suffering unbearably, which would justify her wish to die.

 

The doctor put a drug designed to make her sleep into her coffee which is against the rules. She also pressed ahead with inserting a drip into the woman’s arm despite her protests and asked her family to hold her down, according to the official report on the death. This too contravenes the guidelines. Once the public prosecution department has finished its investigation it will decide whether or not the doctor, a specialist in geriatric medicine, should face criminal charges.

In reading articles about this matter, I'm struck by how often the articles (and my own post here) draw attention to the woman's age, comparatively "young" at 74, as well as the fact that her euthanasia directive written five years earlier also expressed her wish not to leave her home.  If an individual is younger -- with dementia -- does that reduce society's willingness to "allow" aid in dying? If individuals are older -- and what age is old enough -- is it less controversial? And is a family bound by the individual's wishes not to leave her home?  Tough questions, indeed.

This case has also drawn attention in commentary in the US, including a January 24, 2018  Washington Post piece with the provocative title, How Many Botched Cases Would It Take to End Euthanasia of the Vulnerable?   

January 25, 2018 in Advance Directives/End-of-Life, Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Ethical Issues, International | Permalink | Comments (0)

Wednesday, January 24, 2018

SSA's Rep Payee Program

The Social Security Advisory Board recently released a report, Improving Social Security's Representative Payee Program, January 2018. Here is the summary of the report:

More than two years ago, the Social Security Advisory Board (board) committed itself to exploring how to strengthen the representative payee (rep payee) program of the Social Security Administration (SSA), which serves more than eight million vulnerable beneficiaries/recipients. This paper summarizes the board’s recommendations for both immediate changes by SSA and a plan for broader government-wide action. The board found broad interest in improving SSA’s rep payee program and reached bipartisan agreement on how to do so.

The report provides short-term recommendations to SSA and Congress which the board believes will strengthen the current administrative process and create a more manageable monitoring role. The board also advocates for the Office of Management and Budget to pursue long-term structural changes which will involve comprehensive government-wide coordination efforts and cross-agency reforms.

This report is organized into five parts. Part I highlights the size and expected growth of SSA’s rep payee program. Part II examines the processes for determining the need for and the selection of rep payees. Part III provides an overview of SSA’s program monitoring. Part IV discusses the need for inter-agency collaboration. Part V lists all the board’s recommendations discussed and contained within each of the aforementioned sections. The appendices of the report provide a brief history of the rep payee program, a summary of the National Academies study on financial capability, an overview of the board’s work on rep payee issues and of the board’s 2017 forum on rep payees, and a description of an online chart collection that accompanies the report.

The 46 page report, available for download as a pdf here.  The report is divided into 5 parts:  (1) the projected demand for the rep payee program; (2) the way SSA determines if a beneficiary needs a rep payee, (3) SSA's monitoring of the program, (4) inter-agency collaboration, and (5) the Board's recommendations.

Check it out!

 

 

 

January 24, 2018 in Consumer Information, Current Affairs, Federal Statutes/Regulations, Social Security | Permalink | Comments (0)

What to Do About Unlicensed Care Facilities? The Hawaii Issue

According to reports from Hawaii media, the state has a growing number of unlicensed long-term care facilities for the elderly and disabled.  One critic describes the problem as facilities that have "gone rogue."  I strongly suspect that Hawaii isn't alone on the issue, where providers operate in the shadows of the law, seeking to avoid regulations setting minimum standards, authorizing inspections and implementing other state oversight. Operators push back on regulation, citing the costs of compliance.  Certainly, I've seen issues in my own state of Pennsylvania, where some operators attempt to change their names or identities to avoid whatever is viewed as the latest or most demanding regulations.  I remembering watching as an employee of one long-time, respected provider of "assisted living," chipped those words off the granite sign at the front of the property, part of his boss's effort to avoid Pennsylvania's then "new" regulation of assisted living operations.

Legislators in Hawaii have introduced new legislation in an attempt to plug the oversight holes, but operators are pushing back:

Care home operators, case managers, industry regulators and others filled a conference room Monday at the [Hawaii] Capitol for a tense briefing about the consumer protection, fairness and enforcement issues that these unregulated facilities present.

 

Rep. John Mizuno, chair of the Health and Human Services Committee, said he and health officials have crafted a bill that they hope cracks down on the problem. “We cannot lose any more kupuna,” he said. “No one else dies. That’s it.” 

 

The situation has gotten to the point that some health officials are worried that Hawaii’s rapidly aging population may end up with unsafe options for their care. “If the Legislature is unable to stop this trend, more licensed facilities will drop out and this will place more seniors at risk,” said John McDermott, who has served as Hawaii’s long-term care ombudsman since 1998.

By the way, "kupuna" is a Hawaiian word for elders, grandparents or other older persons. For more information, read "Why Hawaii's Unlicensed Elder Care Industry Is Out of Control," by Nathan Eagle," and review HB 1911, which seeks to authorize Hawaii's Department of Health to investigate care facilities reporting to be operating without an appropriate certificate or license.

January 24, 2018 in Consumer Information, Current Affairs, Elder Abuse/Guardianship/Conservatorship, Ethical Issues, Health Care/Long Term Care, Housing, Property Management, State Cases, State Statutes/Regulations | Permalink | Comments (2)

Tuesday, January 23, 2018

Physician-Assisted Death: Ethical Debates, Professional Challenges, Societal Questions

The Hastings Center has announced an upcoming public workshop on February 12-13, 2018 in Washington, DC.  Physician-Assisted Death: Ethical Debates, Professional Challenges, Societal Questions will explore several topics.  The website explains

What is known about the access to and practice of physician-assisted death in the United States and in other countries? In U.S. jurisdictions where it is legal, who makes use of this provision? What are the experiences of health professionals? Who is vulnerable? These are some of the questions that will be explored at “Physician-Assisted Death: Scanning the Landscape and Potential Approaches, a public workshop organized by the Board on Health Sciences Policy of the National Academies of Science, Engineering, and Medicine. Hastings Center research scholar Nancy Berlinger is on the planning committee for the workshop, which will take place in Washington, D.C., on February 12 and 13.

“Ethicists, clinicians, patients and their families debate whether physician-assisted death ought to be a legal option for patients,” states the National Academies board in explaining the background and objectives of the workshop. “While public opinion is divided, and public policy debates include moral, ethical, and policy considerations, a demand for physician-assisted death still persists among some patients, and the inconsistent legal terrain leaves a number of questions and challenges for health care providers to navigate when presented with these patients.” . . . At the National Academies workshop, [Berlinger] will chair a session on data and lessons from other nations, including Canada, which implemented its PAD provision nationally in 2016. . . .

January 23, 2018 in Advance Directives/End-of-Life, Consumer Information, Current Affairs, Ethical Issues, Health Care/Long Term Care, State Statutes/Regulations | Permalink | Comments (0)

A History of Public Pensions and Corruption in Pennsylvania

Pennsylvania Attorney Charles Shields and former  Dickinson Law Librarian [now West Virginia Law Librarian] Mark Podvia have teamed to present a provocative history of public pensions and public corruption, using Pennsylvania as the focus.  The first of their two-part series is available in the January 2018 issue of the Pennsylvania Bar Association Quarterly.  For an overview, the authors write:

On June 12, 2017, Pennsylvania Governor  Tom Wolf signed a bill authorizing significant reform of the Commonwealth's public pension system.  The law will replace the current traditional pension system with three 401(k) style options for future state employees and public school teachers.   This is the first article in what will be a two-art series on the laws regulating public pensions and pension forfeitures in the Commonwealth of Pennsylvania.  This part will examine the historical development of public pensions and provide an overview of the public corruption in the Commonwealth [tied to these pension systems]. The second part will examine the adoption and application of the Pennsylvania pension forfeiture law.   

To provide more incentive for our readers to track down this disturbing history, here's a concluding line from part one of the series:

The combination of a corrupt political system with public pension funds -- ranging from local retirement systems, small but with little oversight, to large statewide funds -- created a situation open to graft and corruption..... 

January 23, 2018 in Consumer Information, Crimes, Current Affairs, Estates and Trusts, Ethical Issues, Property Management, Retirement, State Cases, State Statutes/Regulations | Permalink | Comments (0)

Monday, January 22, 2018

Elders and Bankruptcy-Mark Your Calendars

The National Center on Law & Elder Rights has announced their next webinar, this one on elders and bankruptcy.  Legal Basics: Debt Collection Protections for Older Consumers is set for February 13, 2018 at 2 p.m. est.  According to the email announcement, here is the description:

An increasing number of older consumers are struggling with unmanageable debt as Americans carry more credit card, student loan, and other debts into retirement than in past decades. Debt collectors often aggressively pursue older adults to repay debt from fixed incomes.

This free webinar, Legal Basics: Debt Collection Protections for Older Consumers, outlines the issues facing older consumers and offers strategies to help address the challenges. This session will highlight federal protections for older consumers from abusive debt collection practices.

The webinar is free.  Click here to register.

January 22, 2018 in Consumer Information, Current Affairs, Federal Statutes/Regulations, Other, Programs/CLEs, Webinars | Permalink | Comments (0)

The Importance of Friendship in Later Life & Caregiving

As I type this, it is 5 in the morning and I'm thinking about my "to do" list for the day.  I've already baked cinnamon rolls, the kind my mom likes best.  My list includes talking to my mother's accountant about a problem with W-2 tax forms for 2 of the 4 caregivers who help mom in her home. It includes setting an appointment wih the latest addition to the team, a physical therapist.  I also need to get the forms from my mom's long-term care insurance company, to start the paperwork for an assessment.  And, that leads into another item on my list, stopping at two residential living communities to drop off  "deposits" to hold spots, while my sister and I work towards the possibility -- no, the probability -- of that difficult decision.

As I think about these small tasks, all of which I need to complete before I head to the airport for another red-eye flight between Arizona and Pennsylvania, I'm also thinking about how important friendships are in later life.  Not just my mother's friends, but my own.  Over the weekend, I spent lots of time talking with a long-time friend. We grew up together and used to ride horses.  As I type this blog post, I can see a funny, faded, framed photo on the wall of my childhood bedroom showing the two of us, plus two more friends, competing as a team in a "4s" class, a riding event that probably no longer even exists. We look so serious as we tried to keep our three chestnut horses plus one palomino in step (and from kicking each other). Riding 4s (2)  
Our elder care interests and careers now overlap as she operates a small personal care home, licensed to provide assisted living. We sometimes joke that we started learning about caregiving in 4-H, although back then our charges  were more likely to be critters. How I wish my friend's care center was an option for my mother, but unfortunately it is too far from my sister's home and job to be practical.

Instead, we talked strategies and other options. She had great advice about switching my mother over to electronic cigarettes, to make a transition to a "no smoking home" a bit easier.  Her mother, who's close to my mother's age, is also struggling with staying in her own home.  Ironic, isn't it, that my friend runs one of the best care homes in the city, but her mother won't even visit?  Sort of like the elder law professor whose parents resisted making plans?

But, as my friend said this weekend, caregiving decisions somehow "seem" different when you are talking about your own parent. The same is true for elder law advice. Even as she and I were giving each other "great" advice, we knew it was hard to follow that advice for our own mothers as they resist major changes.   

It was great to have her to talk with this weekend. My friend understood.  

That wasn't the only important friendship over the weekend.  One of my sister's long time friends interrupted a grocery shopping expedition and joined us on a car ride with our mother.  Her lively, funny conversation kept the tone light and upbeat, even as we did our first drive-by with mom, to look at the outside -- just the outside -- of one care center option that is nearby.  That friend, too, is caring for her mother and sometimes it is our turn to join them to create an "evening out "  

Another friend this weekend is the gal who I came to know so well as the director of the wonderful place where my father lived for many months.  She interrupted her "off duty" weekend to talk to me as a friend about choices.

A cherished neighbor and friend of my mother's also texted me early today, to ask about mom's weekend, even as she is juggling duties to help her husband in a rehab facility, where he is recovering from a broken hip.

I heard from a friend in Florida who lives in a terrific CCRC and she always offers a great ear and sage advice (along with lots of good leads for this Blog).

Another friend actually offered to fly out to Arizona to help -- and she lives in the Virgin Islands.  She, too, is helping an aging parent in the states.

I know that when I return to my classrooms in Pennsylvania later this week, individual students will ask, "how did it go?" And they will undoubtedly surprise me with their patience with our interrupted syllabus and make-up classes.  

Friends who understand.  

I could keep typing for a long time to describe our many friends and the important roles we play in each other's lives.  I know -- and hope -- that many of our readers are supported in their caregiving journeys by such wonderful "late-in-life" friendships. Thank you all,

 

January 22, 2018 in Cognitive Impairment, Current Affairs, Dementia/Alzheimer’s, Health Care/Long Term Care, Housing | Permalink | Comments (1)

Increasing Awareness and Understanding of Frontotemporal Dementia

A good friend and Penn State colleague, Dr. Claire Flaherty, a neuropsychologist at Penn State Hershey Medical Center, was part of a recent program explaining frontotemporal dementia, a condition which is often subtle, but nonetheless potentially devastating, especially when misdiagnosed.  Here's the link to the podcast of the program, from a local television station in Pennsylvania. 

 

 

January 22, 2018 in Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Ethical Issues, Science | Permalink | Comments (0)

Sunday, January 21, 2018

Dementia Advance Directive?

I read a recent article in the New York Times as part of the New Old Age Series. Paula Span writes  One Day Your Mind May Fade. At Least You’ll Have a Plan. The article is about advance directives for those with dementia as discussed in a recent article published in the Journal of the American Medical Association (JAMA).  The idea of the dementia-specific advance directive is to express your wishes based on the specific "phase" of dementia you may enter in the future.  The website for this directive is here from which the 5-page directive may be downloaded.  The NY Times article describes the directive "In simple language, it maps out the effects of mild, moderate and severe dementia, and asks patients to specify which medical interventions they would want — and not want — at each phase of the illness."

In the JAMA article, the authors make the case that other existing advance directives aren't particularly helpful for those with dementia because of the way it progresses over time with corresponding diminishing cognitive function (a subscription is required to access the article).  The NY Times article notes that "[a]lthough [dementia] is a terminal disease, dementia often intensifies slowly, over many years. The point at which dementia patients can no longer direct their own care isn’t predictable or obvious. ... Moreover, patients’ goals and preferences might well change over time. In the early stage, life may remain enjoyable and rewarding despite memory problems or difficulties with daily tasks."

The dementia-specific directive describes the person's wishes  as "goals of care" and offers four options for each stage of dementia, directing the person to "[s]elect one of the 4 main goals of care listed below to express your wishes. Choose the goal of care that describes what you would want at this stage."  The directive divides dementia into three stages, mild, moderate and severe.

There are already a number of types of advance directives, with recent pushes for POLST and other initiatives such as the Conversation Project.   Then there is the Five Wishes document,  which as been around for a number of years. Attorneys may be incorporating dementia-specific instructions into advance directives already.

Interesting.

 

January 21, 2018 in Advance Directives/End-of-Life, Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Health Care/Long Term Care, State Cases, State Statutes/Regulations | Permalink | Comments (0)

Friday, January 19, 2018

Intergenerational Shared Housing

We have previously blogged about the concept of shared housing. It can take many forms and can be a great option for certain elders.  The New York Times ran an article about it in NY. Getting a Roommate in Your Golden Years explains that

The concept of pairing older people with younger ones, particularly those who are not family members, is not a new one: It was popularized by Maggie Khun, an elder-rights activist who opened up her Philadelphia home to others for more than 20 years before she died in 1995. Today’s home sharing, however, is as likely to be between those of the same age as it is to be intergenerational. The crucial thing is that it involves two or more people sharing an apartment or a house to their mutual benefit. And finances often play a big role.

The article focuses on the win-win, cost savings on both sides among others. The article features one New Yorker who is running low on funds and turned to a service in Manhattan that matches folks. "The New York Foundation for Senior Citizens connected her with a licensed social worker who asked a host of questions, including details about her sleeping habits, personality, interests and daily schedule. She also had to provide three personal recommendations and her rental agreement, to prove she was on the lease. And she was asked to describe what she considered the ideal roommate. Her response: someone who wasn’t home much."

Another expert quoted in the story notes that shared housing can be a way to fight homelessness amongst elders. Don't think homelessness is an issue for elders? Think again. "Statistics show that the number of older Americans who are homeless is growing. In 2007, homeless people 62 and older who sought shelter accounted for 2.9 percent of the country’s homeless population. By 2016, the percentage had risen to 4.7, according to estimates from the National Alliance to End Homelessness, a Washington, D.C., advocacy group."

Does an elder need to go through an organization to find a roommate? No, but there are certainly advantages to doing so! For example, one elder interviewed for the story detailed her travails in finding the right match. Another expert in the article highlighted the benefits of using an agency.

She advises those interested in home sharing not to go about it on their own: Go through a nonprofit service, she said, or ask a trusted eldercare professional, friends or family to help properly vet the prospective roommates. And before you sign a lease with a boarder, make sure to do a background check... “You need a huge amount of trust and to be very clear with your expectations,” she said. . . “But if you have the help you need to stay in your home — and the tenant gains affordable housing in exchange — I think there’s much to gain socially and spiritually when young and old live together.”

 

January 19, 2018 in Consumer Information, Current Affairs, Housing, Other | Permalink

UPitt Law Prof Larry Frolik Urges Change in Pennsylvania Guardianship Law to Clarify Lawyer's Role in Representing Alleged Incapacitated Persons

Larry Frolik, University of Pittsburgh Law Professor and all-round elder law guru, responds to a 2016 decision by the Pennsylvania Superior Court for In re Sabatino with a strong call for change in existing guardianship laws.  In the abstract for his January 2018 article for the Pennsylvania Bar Association Quarterly on The Role of Counsel for an Alleged Incapacitated Person in Pennsylvania Guardianship Proceedings [currently membership-restricted], he writes:  

When a petition is filed requesting that court find an individual to be incapacitated and appoint a guardian for the individual, the alleged incapacitated person [AIP] has a right to counsel. If the individual does not have counsel, the court may, but is not required to,  appoint counsel. Whether counsel is hired by the [AIP] or appointed by the court, the question arises as to what is the proper role of counsel.  Should counsel act solely as a zealous advocate and attempt to resist the imposition of the guardianship if so directed by the [AIP] or should counsel act in the best interest of the person with counsel making the determination of what is in the person's best interest?

 

A 2016 Superior Court case considered that issue and concluded that if the [AIP] desired not to have a guardian, counsel should so inform the court, but counsel, acting in what counsel believed was the person's best interest, could also tell the court that counsel believed that the person needed a guardian.  That holding is not consistent with the fundamental obligation of counsel to advocate for what the client, the [AIP], desires.  Counsel should not be making an independent determination that the person would be better served if a guardian were to be appointed.  The decisions as to whether an [AIP] is legally incapacitated and, if so, whether the appointment of a guardian is appropriate, are decisions that only a court should make.  

 

The Pennsylvania Legislature should amend the law of guardianship to clarify that the role of counsel for an [AIP] is that of a zealous advocate, and that counsel should not act in what counsel believes are the person's best interest.  If the Legislature does not act, in the future courts should reexamine the issue and rule that counsel should act solely as a zealous advocate and not attempt to promote the person's best interest. 

January 19, 2018 in Cognitive Impairment, Current Affairs, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship, Ethical Issues, Legal Practice/Practice Management, State Cases, State Statutes/Regulations | Permalink | Comments (0)