Monday, April 14, 2014

New Report Finds That Spouses Who Are Caregivers Are More Likely Than Other Caregivers to Perform Demanding Medical/Nursing Tasks

The United Hospital Fund and AARP Public Policy Institute has issued a report today showing that spouses who are caregivers not only perform many of the tasks that health care professionals do—a range of medical/nursing tasks including medication management, wound care, using meters and monitors, and more—but they are significantly more likely to do so than other family caregivers, who are mostly adult children. Nearly two-thirds of spouses who are family caregivers performed such tasks (65 percent), compared to 42 percent of nonspousal caregivers.

Despite these demanding responsibilities, spouses were less likely than nonspousal caregivers to receive in-home support from health care professionals; 84 percent of spousal care recipients received no professional health care on site, compared to 65 percent of nonspousal care recipients. Compounding the challenge, spouses were also less likely to receive help from family or friends or home care aides: 58 percent of the spouses reported no additional help from others, compared to 20 percent of nonspouses. This lack of support elicited special concern from the authors: “‘Taking care of one another’ in an era of complicated medication regimens, wound care, and tasks associated with complex chronic care is a challenge that no one should have to face alone,” they state in the report.
In addition, spouses who are caregivers were on average a decade older than nonspousal caregivers (median age 64 versus 54). They were also poorer, less likely to be employed, and less educated than nonspousal caregivers.
Family Caregivers Providing Complex Chronic Care to Their Spouses, a publication in the “Insight on the Issues” series, summarizes the new findings drawn from additional analysis of data based on a December 2011 national survey of 1,677 family caregivers, 20 percent of whom were spouses or partners. Earlier findings were published in the groundbreaking PPI/UHF report Home Alone: Family Caregivers Providing Complex Chronic Care and in an earlier publication in the “Insight on the Issues” series, Employed Family Caregivers Providing Complex Chronic Care.

April 14, 2014 in Dementia/Alzheimer’s, Health Care/Long Term Care, Statistics | Permalink | TrackBack (0)

Wednesday, April 2, 2014

Women Are Hit Especially Hard By Alzheimer's

Via the Alzheimer's Association:

We have known that women are the epicenter of Alzheimer's disease - making up the majority of both people living with the disease and caregivers. Not only are 3.2 million women living with Alzheimer's, women are also at the epicenter of caregiving for someone with the disease. The Alzheimer's Association's new 2014 Alzheimer's Disease Facts and Figures report shows women have a 1 in 6 chance of developing Alzheimer's, while men have a 1 in 11 chance. As real a concern as breast cancer is to women's health, women in their 60s are about twice as likely to develop Alzheimer's over the rest of their lives as they are to develop breast cancer.

A new Alzheimer's Association women's initiative has launched in conjunction with the Facts and Figures report. Realizing the impact Alzheimer's has on women - and the impact women can have when they work together - we ask women to share why their brain matters and how they can use it to end Alzheimer's at alz.org/mybrain.

2014 Facts and Figures Report

April 2, 2014 in Cognitive Impairment, Dementia/Alzheimer’s, Statistics | Permalink | TrackBack (0)

Sunday, March 30, 2014

MOOC on Understanding Dementia to Begin March 31

Last fall, our Elder Law Prof Blog reported on the available of a MOOC (Massive Open On-Line Course) offered by John Hopkins School of Nursing on "Care of Elders with Alzheimer's Disease and other Major Neurogonitive Disorders."  Did any of our readers participate?  We welcome reports on your reactions to the experience.

Now there's a another MOOC opportunity, this time from the University of Tazmania on "Understanding Dementia."  The 9-week course is described as "building on the latest in international research on dementia." And, true to the spirit of MOOCs, it is free and open to anyone to register, here.  The course begins Monday, March 31 -- so hurry to register.

March 30, 2014 in Cognitive Impairment, Dementia/Alzheimer’s, Science, Web/Tech | Permalink | Comments (1) | TrackBack (0)

Thursday, March 27, 2014

Good News or Bad News? A Blood Test with Potential to Predict Future Cognitive Impairment

Occasionally on this Blog we post to studies suggesting cutting edge scientific developments connected to Alzheimer's.  For example, last October, our colleague Professor Dayton, provided a link to a study in England described as a possible "breakthrough" in Alzheimer's research related to misfolded proteins in the brain.   John O'Connor, the executive director for McKnight's Long-Term Care News, recently offered his own reaction to such news, following release of a different study:

"Here we go again: This week saw the release of yet another breathless study claiming the cure for Alzheimer's disease is getting closer — maybe.

 

The latest incantation is a report in Nature Genetics. This entry touts an international study of the disease that may help us unlock a cure. Unless, of course, it doesn't.

 

It seems like we get treated to at least one or two of these “important breakthrough” studies every month, sometimes more. And the plot seldom varies: Earnest investigators working countless hours have issued a report that may bring us closer to a cure. Then, tucked somewhere in the back is a mention that, ahem, more research is needed."

As with Mr. O'Connor, I suspect many of us have experienced "breakthrough fatigue" in the area of Alzheimer's research.  Nonetheless, I am going to point to another study, this time suggesting a blood test targeting biomarkers that "may be sensitive to early neurodegeneration of preclinical Alzheimer's disease," and thus predictive of "either amnestic mild cognitive impairment or Alzheimer's disease within a 2-3 year time frame."  The report on "Plasma Phospholipids Identify Antecedent Memory Impairment in Older Adults" is in the March 2014 issue of the journal Nature Medicine and despite the somewhat intimidating title, it makes for interesting reading. 

But my real question is not about the value of the study, or as John O'Connor's essay suggests, concerns about the potential for hype to generate false hope, but whether many would actually be horrified by a predictor of future cognitive impairment within 2 to 3 years, even (especially?) one with "over 90% accuracy."  I can think of several people I've known who worried about their "failing memory," sometimes for years, but who expressly rejected seeing a specialist for testing.  Without a solution, such tests might be the ultimate example of the unfunny joke: Do you want to hear the good news or the bad news first?  We know what's going to happen to you -- but you aren't going to like it. 

 

March 27, 2014 in Cognitive Impairment, Dementia/Alzheimer’s, Science | Permalink | Comments (0) | TrackBack (0)

Tuesday, March 25, 2014

Surrogate Decision-Making to Preserve Sexual Autonomy for Residents in Nursing Homes

William and Mary Law School student Elizabeth Hill takes on the challenge of discussing sex and seniors in her Student Note, "We'll Always Have Shady Pines: Surrogate Decision-Making Tools for Preserving Sexual Autonomy in Elderly Nursing Home Residents" for the Winter 2014 issue of the William and Mary Journal of Women and the Law.  She concludes:

"With changes to state law to expand the tool of power of attorney, residents who want to retain autonomy in decisions about their bodies and relationships could employ surrogate decision-making tools like durable powers of attorney and advance healthcare directives to ensure that they are able to participate in and enjoy sexual activity even after the have lost the capacity to consent and even if their families disapprove of the activity. Perhaps the most difficult aspect of adopting such a mechanism would be putting aside our personal and preconceived notions about sexual conduct in order to allow others to experience a little happiness in an otherwise gloomy setting."

The title for the article, alluding to Humphrey Bogart's famous line in Casablanca, is a clever introduction to a sensitive topic. 

March 25, 2014 in Cognitive Impairment, Dementia/Alzheimer’s, Ethical Issues | Permalink | Comments (0) | TrackBack (0)

Wednesday, March 19, 2014

Hot Book: 100 Simple Things You Can Do to Prevent Alzheimer's

I spent most of our recent spring break in Arizona with my parents and sister (and trying to thaw my frozen bones).  I had time to visit friends, some I haven't seen in decades, and often I was  tempted to give a rueful chuckle.  We're all in the same age range -- and several of us are searching for ways to help aging parents.  With friends who have a parent with dementia, as soon as they find out that much of my work now focuses on "elder law," I would get what I've come to think of as "the question."

What's the question?  "Is it inevitable that I too will develop dementia?"  Of course, I'm a  law professor, not a doctor.  My friends are asking the wrong person.

But, then I noticed that several of my friends were reading the same book.  The book is "100 Simple Things You Can Do to Prevent Alzheimer's and Age-Related Memory Loss," by  Jean Carper, a well-respected medical journalist.  One friend loaned me a copy.  It was first published in 2010.  I asked friends what they liked about the book, and more than one mentioned the "single idea" format for chapters, short enough to keep the reader on task, while sufficiently detailed to convince the reader why that "tip" just might make sense.

Some of the 100 "things" are, I hope, mostly an affirmation of common sense, such as Chapter 17's "Count Calories" and Chapter 20's "Control Bad Cholesterol."  Occasionally a chapter strikes me as a bit trendy, such as the admonition in Chapter 22 to "Go Crazy For Cinnamon."  But quite a few topics and explanations were either surprising, intriguing, or both, including Chapter 3's recommendation to "Check Out Your Ankle."  The author explains how low blood flow in your foot, measurable by an ankle-brachial index (ABI) test, can point to looming troubles for the brain.  

Happy reading and good luck adapting the tips to your life.  Remember, with 100 recommendations to read, evaluate, and, as appropriate,  embrace, it doesn't hurt to start "young." 

March 19, 2014 in Books, Cognitive Impairment, Dementia/Alzheimer’s, Science | Permalink | Comments (0) | TrackBack (0)

Monday, March 17, 2014

St. Patrick's Day Update: Irish Research on Ageing

IMG_1978On St. Patrick's Day it seems appropriate to check on what is happening with research on aging -- or ageing as they spell it -- in Ireland. 

The Centre for Ageing Research and Development in Ireland (CARDI) is a great resource for comparative research, capturing a wide range of articles and projects in Europe, as well as the latest research grants in the north and south of Ireland. 

In one of the recent reports linked by CARDI, "A National Survey of Memory Clinics in the Republic of Ireland," researchers are critical of the lack of clear standards for diagnosis, treatment and collection of data on dementia, and point to potential weaknesses observed in a national system of Memory Clinics (MCs) in the Republic of Ireland (ROI), noting the potential for such problems to exist on a broader basis: 

"Although this is an Irish-based study, our findings raise several important questions pertinent to many countries around the world currently developing and expanding diagnostic and postdiagnostic services to address the challenge of dementia.  First, what type of specialist services do MCs offer and what are their core aims and objectives? Are MCs concerned with offering a more correct diagnosis than what might otherwise be available through generalist services? Are they committed to providing earlier diagnoses and interventions in more unusual cases (including memory problems that are reversible) and if this is the case, is a waiting time of up to four months acceptable? In the ROI, GPs [general practitioners] are permitted to initiate cholinesterase inhibitors for patients diagnosed with dementia, but would it be preferable if the prescription of such drugs was confined to MCs or other specialists involved in dementia diagnosis? What role do MCs play with respect to the education and training of primary care and other allied health professionals? Should this role be confined to only the larger longer established clinics that become Centers of Excellence and review only few and very rare cases?"

Do we have any systemic approach to diagnosis, treatment and data collection on dementia in the United States?

March 17, 2014 in Cognitive Impairment, Dementia/Alzheimer’s | Permalink | Comments (0) | TrackBack (0)

Wednesday, March 5, 2014

"Choosing Wisely" -- Recommendations for Medications & Treatments in Senior Care

The American Geriatrics Society and the American Board of Internal Medicine Foundation have joined in a venture called "Choosing Wisely," and recently issued "Five Things Physicians and Patients Should Question." 

The items are intended to stimulate more thoughtful decision making, especially in dementia care, and address diet, restraints, and use of screening tests.  Two items that hit home include:

  • Don't prescribe cholinesterase inhibitors for dementia without periodic assessment for perceived cognitive benefits and adverse gastrointestinal effects.
  • Don't prescribe any medication without conducting a drug regimen review.

This "Five Things" list was actually the second set of "Choosing Wisely" recommendations.  Here's a link to the important first list, which includes the concern about off-label prescriptions of antipsychotic medications to treat symptoms in dementia, a topic that has also been the subject of major whistleblower cases and settlements involving the pharmaceutical industry. 

March 5, 2014 in Cognitive Impairment, Consumer Information, Dementia/Alzheimer’s, Ethical Issues, Health Care/Long Term Care | Permalink | Comments (0) | TrackBack (0)

Thursday, February 27, 2014

Hilarity for Charity: Actor Seth Rogen Testifies on a Serious Subject

Hat tip to Penn State Law Student Kevin Schock for sending this news!

Actor Seth Rogen, organizer of Hilarity for Charity, uses humor to call attention to the need for better funding to fight Alzheimer's, and on Wednesday brought his humor to the U.S. Senate.  Here he is in testimony before the Senate Subcommittee on Labor, Health and Human Services, Education, and Related Agencies, describing the struggle of his own wife's family with early onset dementia. 

 

February 27, 2014 in Current Affairs, Dementia/Alzheimer’s | Permalink | Comments (0) | TrackBack (0)

Wednesday, February 26, 2014

AARP launches state legislative campaign for caregivers

Via AARP:

AARP recently launched a new multi-state caregiving advocacy campaign, with nearly every AARP State Office involved.  Working with governors, state legislators, other policymakers and community partners, we’re determined to advance policy options that will help family caregivers.  Two significant components of the campaign are:

The Caregiver Advise, Record, Enable (CARE) Act.

10 AARP State Offices are working to pass CARE Act  through state legislation and/or regulation this year, with Oklahoma and Hawaii leading the way.

  • In Oklahoma SB 1536 – the Oklahoma version of the CARE Act – just passed the Senate and will be heard in the House soon.    Meanwhile, Governor Mary Fallin declared this month as “February Caregiver Month” to   honor the state’s 600,000 family caregivers.
  • AARP Hawaii, is urging the Senate Judiciary Committee to pass Senate Bill 2264, the Hawaii equivalent of the CARE Act.  AARP members in Hawaii are now contacting members of the committee asking them to support the 169,000 family caregivers in the state by passing Senate Bill 2264.

By passing the CARE Act these states will ensure that:

  • The name of the family caregiver is recorded when a loved one is admitted into a hospital or rehabilitation facility.
  • The family caregiver is notified if the loved one is to be discharged to another facility or back home.
  • The facility must provide an explanation and live instruction of the medical tasks – such as medication management, injections, wound care, and transfers – that the family caregiver will perform at home.

For more on AARP’s advocacy: AARP Announces 2014 Advocacy Agenda: Across the States.

February 26, 2014 in Dementia/Alzheimer’s, Health Care/Long Term Care, State Statutes/Regulations | Permalink | TrackBack (0)

Tuesday, February 25, 2014

The Very Well-Intentioned, but Dangerous, Promise?

One of my frequent travel routes is to drive between Carlisle and Baltimore, in order to take direct flights from BWI to Phoenix, where my parents live. Usually these drives are in the middle of the night, as I try to avoid traffic by scheduling very early or late flights. One positive aspect of this travel is the time to discover interesting radio programs; there is something about listening to radio in the dark that allows one to hear more clearly.  Last week, I lingered in the car after reaching the long-term airport parking, to listen to the end of an especially effective interview.

On Point with Tom Ashbrook, was hosting Kimberly Williams-Paisley who spoke movingly about her family as they coped with her mother's early onset of a form of dementia, diagnosed at age 61.  For those of you who enjoy either movies or music, you might recognize Kimberly as an actress from Father of the Bride (she was the daughter driving Steve Martin to wit's end) and Nashville, or as the wife of country music star Brad Paisley.  Also featured on the program was a clinical social worker, Darby Morhardt, who is an associate professor at the Cognitive Neurology and Alzheimer’s Disease Center at Northwestern University’s Feinberg School of Medicine.

The program was very thoughtful and emotional, but for me the most compelling words came from Kimberly's father, Gurney Williams. 

This is a man deeply in love with his wife and also deeply affected by her condition.  At first he tried to hide her diagnosis, but over time, this became more and more difficult.  Mr. Williams describes how he finally came to terms with the need for help -- and the need for more than family help -- when his children staged a bit of an intervention.  They asked him to recognize that his wife's condition, which in her case included confusion, mood swings, anger and -- at times -- violence, was more than they could cope with in the home.  They were worried about their mother, but even more devastated by "losing" their father as he struggled to care for her.  With the family's help, he finally made the difficult decision to place his wife in a formal care setting. 

And it was during his description of the journey, that I heard the words I've also heard many times from friends, family, students and clients.  "I promised my loved one I would never put her in one of those places." I have come to recognize this promise as completely well-intentioned, but also potentially dangerous for all involved.

Listening to Mr. Williams and Kimberly, you could tell formal care was the right decision and they were able to find the right kind of care facility for their loved one.  And it was a decision that allowed all of them to find a new way to express their love and devotion to her, while also providing her with a supportive, safe environment. Kimberly talks about how she stopped talking about her mother in the past tense, rediscovered her and how they created a new, valuable relationship.  Their story has a happy evolution, which, of course, is different than a happy ending.

One of the reasons I was so affected by listening to Mr. William's words, was that I was on my way to the airport to visit my father -- to see him for the first time --  after his transfer to a dementia-care community.  All of my fears and hopes were bound up in my listening.  On arriving in the airport I went directly to a shop and bought a copy of the March issue of Redbook Magazine, which carried the story by Kimberly Williams-Paisley that led to the invitation for her and her father to be guests on the On Point program. I read and re-read "How I Faced My Mother's Dementia" on the plane -- and shared her words with my mother when I arrived. 

I suspect I might write more about my own evolution with my father. Right now it is easier for me to recommend the article, and to say the podcast of the On Point show is even better than the article.  

February 25, 2014 in Cognitive Impairment, Dementia/Alzheimer’s, Health Care/Long Term Care, Housing | Permalink | Comments (1) | TrackBack (0)

Thursday, February 6, 2014

Dancing to ward off Alzheimer's

Via NBC News:

Every Saturday at Casa Maravilla, a housing development for seniors in Chicago, dozens of older Latinos gather to dance and, they hope, help preserve their memory.  At twice-weekly practices, they step in sync in promenade-like moves to danzón, the slow and elegant musical genre that’s popular in Mexico. Or, they swish their hips and twist through each others’ arms to more energetic salsa.  The dancers are part of the Latino Alzheimer’s & Memory Disorders Alliance, or LAMDA, which started “Bailando por la Salud” (Dancing for Health) to inspire Latinos who are uncomfortable with other forms of exercise to get fit and healthier -- which in turn may help stave off Alzheimer’s and other memory loss conditions.

Read more at NBC News.

February 6, 2014 in Cognitive Impairment, Dementia/Alzheimer’s | Permalink | TrackBack (0)

Wednesday, February 5, 2014

A Practical and Compassionate Guide to Sexuality & Dementia

An important new book, Sexuality and Dementia: Compassionate & Practical Strategies for Dealing with Unexpected or Inappropriate Behaviors, published in December 2013, offers a physician's candid assessment of a topic often discussed, if at all, only in hushed tones.

Reading the first chapter called to mind a colleague in aging studies, a nurse, who related to me how a tearful woman once asked her how to hire a prostitute, as her husband was in the mid-stages of dementia and constantly wanted sex. The wife as the home caregiver was, in a word, exhausted. This book recognizes that a wide range of sexual behaviors often accompany dementia.  Sexual agression is sometimes even a sign that something has changed in the individual's cognitive functioning, only later recognized as an early step in the process of dementia.

The author, Geriatric Neuropsychiatrist Douglas Wornell, is quite critical of the medical profession's approach -- or rather a frequent failure to even discuss -- the topic.  Dr. Wornell observes that "to date, patients and their partners have been virtually abandoned by an entire medical system that has provided little to help them with sexuality as it relates to dementia. Considering the numbers of people affected -- tens of thousands of people in my practice alone -- that abandonment is nothing more than shocking."

The book is written in plain terms, covering everything from the "neurobiology of sex and dementia" to the potential for medication to stimulate -- or alleviate -- the condition, while also discussing the impact of the behaviors in the home and in more formal care settings. 

February 5, 2014 in Cognitive Impairment, Dementia/Alzheimer’s, Ethical Issues, Health Care/Long Term Care | Permalink | Comments (0) | TrackBack (0)

Tuesday, January 21, 2014

Geriatric Care Management and Boomers

Recently, a Pennsylvania friend was describing her aging father's situation in one of the sunshine states.  When her father, a widower, began to show signs of diminishing capacity, the adult children discussed options, including moving Dad closer to one of them. But, he liked his retirement spot in the sunshine, had friends, and, in fact, there were more care options where he was living.

Eventually, my friend hired a local geriatric care manager in the sunshine state, with the cost shared by her and two siblings.  In our most recent conversation, my friend described that decision as perhaps the best move the family made.  She said that at first she had a hard time getting her father's facility to accept the fact that they should call the care manager first.  But having an informed person -- an experienced advocate for her father -- in the community has often been essential, as questions arose over insurance, level of care, medications, transfers between facilities, nutrition and whether to hospitalize. My friend still makes regular trips to visit her father, but the local manager meant there were fewer emergency trips.

Geriatric care managers, sometimes called care coordinators, elder care coordinators, or professional care managers, could -- and perhaps should -- be an increasingly important part of planning.  One of the questions about this emerging profession is credentials.  At least two national trade groups exist, including the National Association for Professional Geriatric Care Managers (NAPGCM) and the National Academy of Certified Care Managers (NACCM).

In addition, law firms specializing in elder law frequently offer care management services, often employing non-lawyer professionals as part of the team.

Geriatric care management may be very important to "elder boomers," both as they become seniors caring for their even-more-senior-aged parents, and as future care-needing individuals themselves.  Unfortunately, a big question may be cost.  Medicare and Medicaid -- and most insurance -- does not cover the cost of care management.  As reported by the New York Times a few years ago in "Care Coordination: Too Expensive for Medicare?," attempts to secure public funding for care managers has been stymied by studies that show care management does not necessarily reduce the costs of care. 

Nonetheless, such coordination may be particularly important in a nation where family members often live far apart.  In my friend's situation, she expected the need to last for a couple of years, but in fact, her father is approaching age 98, and the "healthy" relationship between the children, their father and his care coordinator has lasted for more than 10 years. 

January 21, 2014 in Cognitive Impairment, Consumer Information, Dementia/Alzheimer’s, Ethical Issues, Health Care/Long Term Care, Legal Practice/Practice Management, Medicare | Permalink | Comments (0) | TrackBack (0)

Monday, January 20, 2014

Potpourri: Interesting Case Discussions in Elder Law Practitioners' Posts

I've been catching up on reading of practitioners' blogs.  I quickly came across interesting discussions of potentially cutting edge decisions in recent law and aging cases.  Here's a selection:

  • From Tucson, Arizona, Robert Fleming's Legal Issues Newsletter reports on the background of the Arizona Court of Appeals decision on  January 2, 2014 in Savittieri v. Williams, affirming the post-death annulment of a woman's marriage for lack of capacity. 

 

  • From Dearborn Michigan and Pittsburgh, Pennsylvania, John Payne's Off the Top O' My Head, comments on recent decisions within the Third Circuit that address the use of spousal annuities or trusts in Medicaid planning.  For example, he discusses the January 14, 2014 ruling in the United States District Court, Western District of Pennsylvania in Zahner v. Mackereth, that makes fact-specific rulings in three consolidated cases involving annuities and which also, surprising, revisits the dormant "Granny's Lawyer Goes to Jail" provision of federal Medicaid law.  Fortunately for attorneys, the court agrees with former Attorney General Janet Reno that application of the law to legal advice is unconstitutional. Nonethless, I think it is safe to say that the Pennsylvania Department of Public Welfare's attempt to push the law is an indication of the battle lines being drawn over use of annuities.

 

January 20, 2014 in Cognitive Impairment, Dementia/Alzheimer’s, Estates and Trusts, Federal Cases, Medicaid, State Cases | Permalink | Comments (0) | TrackBack (0)

Friday, January 10, 2014

Courageous Family Helps Explore the New Frontier of Dementia Diagnosis

The earliest signs of dementia are often subtle.  It can be tempting and easy to brush them off as merely the signs of fatigue or being overwhelmed.  Ironically, at the other end of the spectrum, advanced dementia, it may also be easy to jump to conclusions, believing one diagnosis fits all forms of dementia.  The modern assumption is probably most often Alzheimer's, while in earlier decades the label might have been simply "senility."

I often ask a medical or gerontology professional with expertise in the various forms of dementia, including Lewy-Body Disease, Frontotemporal Dementia (FTD), Parkinson's related dementia, vascular dementia, as well as Alzheimer's, to speak to my elder law classes.  The lectures are fascinating (okay, also a little frightening). But often, near the near the end of a class discussion, a student will ask, "if there is no cure for dementia, does diagnosis of the source really matter?"

A family's search for answers suggests there are may be very good reasons to pursue a definitive diagnosis, even if the ultimate answer is possible only after the death of a loved one impacted by disease.  The Ruhrig Family in central Pennsylvania was perplexed by the symptoms and rapid progress of confusion for the patriarch of their family.  Sixty-six year old Weston Ruhrig passed away less than a year after the family first began seeing signs of confusion:

"The 6-2, 210-pounder was up by 7 a.m. daily ... seemed always on the move. In June [2013], he conducted a charity auction for United Cerebral Palsy of Central Pennsylvania, just as he had since 1987. He seemed normal.

 

But his family began noticing odd behavior. Ruhrig became withdrawn. He continually locked doors, sometimes locking out his wife after she had gone to the yard or garage during daylight. Ruhrig was known for harping on people to turn off lights to save electricity. Now he switched on lights for no reason and left the room.

 

By September [2013], his family had persuaded him to see his family doctor. The doctor found no medical problems but referred him to a neurologist.  Ruhrig felt nothing was wrong. In November, the neurologist gave Ruhrig cognitive tests. Ruhrig named the president and recalled facts including his wife’s birth date. But he couldn’t correctly state her age or calculate it. Still, he joked during the visit."

As carefully detailed by Patriot News writer David Wenner, eventually doctors suggested the problem was Alzheimer's.  But the family, contrasting their father's symptoms with those of others they knew with more traditional presentations of Alzheimer's related dementia, persisted in seeking a more precise diagnosis.  An MRI was viewed as normal.  Another test was a spinal tap.  Unfortunately, Mr. Ruhrig died suddenly in December 2013, after a fall that led to a rapid decline. 

The diagnosis occurred after his death, based on the results of the spinal fluid analysis:  Creutzfeldt-Jakob Disease, a very rare variation of the family of diseases associated with "Mad Cow" and "chronic wasting" in deer, but a form that is not considered to be caused by eating or handling contaminated meat.  Deterioration associated with the condition is rapid, usually leading to death within a year, and the cause of the disease is currently unknown, and there are no cures.

But the courage of the family in pursuing and talking about the diagnosis could help others, as better understanding of the various forms and causes of dementia should help the larger community of physicians, epidemiologists and other experts chart the frontiers of dementia.  Heredity, life-style, diet, viruses, environmental impacts  -- with the help of families, all of these factors and others might better be understood in the search for causes and solutions for the different forms of dementia. 

For more, read "Hampton Township Man Dies of Mysterious Disease Sometimes Associated with Mad Cow and Chronic Wasting."  Thanks to my colleague, Professor Laurel Terry, for pointing me to this interesting local article.

January 10, 2014 in Cognitive Impairment, Current Affairs, Dementia/Alzheimer’s, Health Care/Long Term Care, Statistics | Permalink | Comments (0) | TrackBack (0)

Tuesday, January 7, 2014

Book review: Deliberate Accident by Barbara Cassidy

This book review is the first of two student-authored pieces I will be posting this week.  We've heard from Regan before--she attended the NAELA/NALI conference in November and wrote two posts about her experiences there.  Regan is a December 2013 graduate of William Mitchell.  She also has a certificate in health law compliance from Hamline.  Regan will  be taking the Minnesota bar in February and is looking for a position in the elder law/health law field.  Contact me if you have any leads for her and I will put you in touch!

Barbara Cassidy, Deliberate Accident (BookCrafters 2013) (self-published) (available from Amazon)

Review by Regan Bovee, J.D. William Mitchell College of Law, December 2013

Deliberate Accident tells the story of author Barbara Cassidy’s fight to protect her father, Robert,  from physical, financial, and verbal abuse from his second wife, Diane. After Robert’s first wife (Barbara’s mother) dies, Robert quickly begins dating and enters into several relationships with women who take advantage of his generous, trusting personality. Robert eventually meets and marries Diane, a nurse at a local nursing home who, unbeknownst to Robert, has recently married a well-to-do resident. Diane makes a living from seducing male residents and other elderly men, gaining control of their finances, and selling their possessions.

The beginning of Robert’s relationship with Diane coincides with the first signs of his dementia. It is often hard for Barbara to tell if her father’s actions are “her father being her father” or if he is losing cognitive ability. By the time it is clear that Robert has dementia, Diane is so entangled in their lives that Ms. Cassidy, her father, and their family are helpless. 

The focus of the book is Diane’s reprehensible treatment of Robert, but the real value is in the very accurate depiction of how Robert’s dementia progresses over the course of ten years. Ms. Cassidy frequently quotes a psychologist who tells her that Robert’s dementia is “as good as it will ever get right now . . . In fact, it will only get worse.” This statement holds true throughout the book and is sure to have a familiar ring to those who have cared for someone with dementia.  Although Ms. Cassidy, a long-term care nurse herself, continues to advocate for her father as his dementia becomes increasingly worse, there is little she can do for him.

Although Ms. Cassidy describes the book as a memoir, there are several conversations and descriptions of other’s thoughts and actions of which it would be impossible for her to have knowledge. This makes the story seem a bit less credible but enhances the dramatic quality. Further, the story line is difficult to follow in some areas. Characters are referred to interchangeably by their name or relationship (i.e. Robert or Dad) and sometimes switch mid-page, which disrupts the flow. Some of the sentences are also a bit choppy. Ms. Cassidy’s goal in writing this book, however, was to share her experience dealing with her father’s dementia and his new wife who abuses him physically, emotionally, and financially. She more than succeeds in that goal.

Thanks, Regan!

Note:  This book is self-published.

January 7, 2014 in Cognitive Impairment, Dementia/Alzheimer’s, Other | Permalink | TrackBack (0)

Monday, December 30, 2013

Diane Rehm Interview with Author Katy Butler on "Knocking on Heaven's Door"

One of the most memorable pieces I've read was a New York Times essay written a few years ago by Katy Butler.  Butler wrote with restrained emotion and honesty about her father's struggle with deepening Alzheimer's, fueled beyond all hope of better days by his pacemaker.  She later expanded on the essay with a book published in 2013, "Knocking on Heaven's Door: The Path To a Better Way of Death," where she digs into the background of legal and medical issues about end-of-life, and details her mother's very different path. 

Diane Rehm has a fascinating interview with Katy Butler, available on podcast and being re-broadcast today on many public radio stations. Near the end of the hour-long segment, one of the callers is an Elder Law attorney (I didn't catch his location -- I was blogging as I listened!).  Here's a link to Diane Rehm's website for details on the interview. 

December 30, 2013 in Advance Directives/End-of-Life, Dementia/Alzheimer’s, Ethical Issues | Permalink | Comments (0) | TrackBack (0)

Tuesday, December 17, 2013

UK news: Front-liners trained to recognize signs of dementia

Via the Telegraph:

Tens of thousands of pharmacists, bus drivers and bank staff are being trained to recognise the signs of dementia as part of a “front-line force” against the disease.  Managers of some of the Busbiggest firms have pledged to educate staff to recognise the effects of dementia.  Boots, Lloyds bank and First Group have all committed to do as much as possible to help dementia sufferers after David Cameron promised to lead a national “fightback” against the illness. Jeremy Hunt, the Heath Secretary, said “every section of society” must “step up” to help tackle the illness, which affects 800,000 people in the country.  “Britain’s biggest companies will build up a front-line force of thousands of people able to spot the signs of dementia and understand the needs of sufferers, helping people with the disease to live a normal life for longer,” Mr Hunt told The Daily Telegraph.  The Prime Minister said this week that a cure for dementia could be found within 12 years as he announced funding for research into the disease would be doubled.

December 17, 2013 in Cognitive Impairment, Current Affairs, Dementia/Alzheimer’s | Permalink | TrackBack (0)

Wednesday, December 11, 2013

Edinburgh Symposium: Ethics & Care for Older People Approaching End of Life

The Royal College of Physicians of Edinbrugh is hosting a symposium on "Ethics and Care for Older People Approaching End of Life: Symptoms, Choices and Dilemmas" on April 3 in Scotland.  While many of the sessions focus on medical treatment, as one might expect given the setting, the program takes an interdisciplinary approach,  with sessions on:

  • Pain mangement in older people
  • Palliation of symptoms in advanced dementia
  • Nutrition in advanced frailty
  • Escalating care vs. ceiling of intervention: two sides of the same coin?
  • Advanced care planning in the community: choice or chimera?

The  keynote address is "Meeting the Challenge of Delivering Quality Care for Older People in the Last Days of Life."

The website explains how to identify or establish connections for live streaming of the program to venues overseas.

December 11, 2013 in Cognitive Impairment, Dementia/Alzheimer’s, Health Care/Long Term Care, Programs/CLEs | Permalink | Comments (0) | TrackBack (0)