Information on music therapy for Alzheimer's slowing becoming better known

How much progress has been made to make music therapy more available to seniors with dementia?
  

A good place to start looking is the writeup at “A Place for Mom” here.  There seem to be about 3200 therapists working now in the country.

  

The centerpiece for information seems to be the American Music Therapy Association, here.   There are about 70 colleges that offer degrees in Music Therapy, according to the AMTA.   The field seems to be developing, becoming standardized and has some bureaucracy.

  

Is music therapy a field for musicians who could use the income (performing in senior or assisted living centers)? Is it a field for IT projects?  We don’t hear a lot about in the news, outside of the film “Alive Inside: A Story of Music and Memory”, reviewed on the Movies blog July 26, 2014. 
  

Alicia Clair has a video on “Music Therapy, Alzheimer’s, and Post-Traumatic Stress” from the Library of Congress (2011).

Sunrise Senior Living has a link on the issue here.

  

Music therapy is also valuable in special education, with autism, but that is a different area. 

Employers start to offer elder-care benefits, out of enlightened self-interest

The Washington Post leads off its Metro section Monday morning with an important story by Brigid Schulte about eldercare, “As population ages, balancing jobs and parents”.  Online the title is more specific: “Aging population prompts more employers to offer elder-care benefits to workers,” link here. The story was findable by Google but not within the search box of the Post’s own site early Monday; this often happens.

  

The demographics drive the self-interest of employers, as a MetLife survey reported in the story indicates.  In 1999, my mother was offered coronary bypass surgery at age 85.  At the time, this was almost unheard of;  now it would be common.  There was a concern briefly that it might not be offered unless I got my employer to move me back to Arlington, but I had moved to Minneapolis to avoid a “conflict of interest”.  Fortunately, this did not happen.  My mother spent two weeks with a bad experience in a skilled nursing facility, where an employee did not respect the order that she was not supposed to raise her arms while the staples healed.  This could have caused a catastrophe, although it did not and everything finally turned out well.  She would live until the end of 2010.

In 1999, of course, there were no eldercare benefits, and the demographics were not known well enough to provide employers an incentive.  Today, medicine can keep parents alive longer in extreme disability, especially dementia and Allzheimer’s. 

  

Unpaid family leave up to 12 weeks was possible in 1999, however, according to the early Clinton-era FNLA of 1993.  I would have had to “sacrifice” paid vacation first however.  I remember a coworker in Minneapolis saying to me, “But Bill, she’s your mother.”  This situation is taxing in unusual ways for those who did NOT have their own children.  (In fact, the coworker said, “Your mother didn’t have enough children.”  Tacky.  She couldn’t.  Although my parents at one time considered adopting a sister for me.) 

  

  

I found a video on eldercare benefits in Canada, but there isn’t much on YouTube on employer benefits yet. 

Case in Virginia shows that elder-neglect laws do have some teeth; a tragic story with extreme age; the adult child was already 70 herself

A recent sad incident in Alexandria, Virginia provides a reminder that neglect when having eldercare responsibilities can result in criminal prosecution.  The story leads the Metro section of the Washington Post Friday, November 14, 2014, and is by Matt Zapotosky, link here. 

  

The case involves a 70 year old woman, Anne Bailey, caring for her 98 year old mother.  Apparently when the mother fell (from a wheelchair) the defendant left her alone on the ground for two days.  The mother eventually died, but from a heart attack not related to the fall.  And complicating the story is the fact that Bailey did call 911, and it is not clear why that call failed (technically) or why other attempts to get help failed (as detailed in the story).  Nevertheless, Bailey plead guilty to a single felony count of “neglect of an incapacitated adult”.  The text in the Virginia code is here. The sentence is likely to be limited to community service and there are legal maneuvers designed to keep a felony off the defendant’s record.

  

One striking aspect of the case is the extreme age of the mother, but also the daughter.  People, especially women,  are surviving into the late nineties or to over 100 with extreme disability (particularly dementia) much more often than in the past. Adult children do have a legal obligation to provide for their care in most or many states, about 30 of which (including Virginia) have filial responsibility laws.

  

Another relevant fact was that Bailey seemed to be providing care alone, and that the City of Alexandria had offered to provide home health services.  It is not clear from the story how these would have been paid for.  Medicare does not pay for custodial care, but Medicaid will pay for nursing home care for those without sufficient assets.  It is theoretically possible to require the daughter to pay for the nursing home care before Medicaid does, but so far, to my knowledge, the only state in which this has actually happened is Pennsylvania (May 22, 2012 story here, the Pittas case).  Readers of this blog may know of other cases and are invited to comment.

  

In my own case, I had returned home to Virginia in 2003 when I was 60 myself, after forced “retirement” (job buyout/layoff in Minnesota).  My own mother (born in 1913) started showing more serious problems in 2007 (with a parking lot fall that did not result in serious injury).  In May, 2009 she had a mild stroke and spent three weeks in Medicare-approved skilled nursing.  She was released with a diagnosis of dementia, which was believed to be more heart-related (vascular) than Alzheimer’s.  I arranged for occasional home health as soon as she returned home in June.  Usually, someone would come if I went out for an extended period.  In July she seemed to improve and I actually allowed her to be alone when I went out (usually not more than about four hours at a time).  Once she was allowed to drive to the grocery store, and came back without incident.   But in August the decline set in again, and home health was usually hired.  I had two different companies.  One of the companies sent a nurse for review and that nurse told me, sometime later in the fall of 2009, that leaving a patient on Aricept alone could be prosecuted as neglect.  (A physician later discounted this idea.)  By November we had care here during the day all weekdays, and by Spring 2010 we had day care every day, which extended to 24 hour care in September.  But care had been arranged throughout 2010 for most weekend evenings, as I often needed to go out.  Mother would pass away at 97 on December 14, 2010 after four days in Capital Hospice.  I had the services of Hospice (Medicare-paid) at home (nurse visits and social worker) starting in November 2009 (when there is a life expectancy of six months or less).  Medicare typically gets billed about $4000 a month for in-home visits.  Self-pay of 24 hour home health (from her assets) cost about $12000 a month, more than a nursing home (then about $7500) but she was determined to stay at home.  I had met with a lawyer and set up a trust back in early 2009.

  

The obligation of adult children (I am an only child) to provide for parents, while sometimes driven by family loyalty and emotion, is an important moral question, too, and it would have bearing on other major policy issues, especially marriage (even now same-sex marriage) and policies that influence the decision as to how many children to have (or even adopt).  Not everything in life is just a matter of personal choice and living up to the choice.  There are things we don’t have a choice about. 

Estate or trust beneficiaries need to beware of the "dead hand", although we don't live inside George Eliot's novels

Here’s a good topic for estate planning:  the “dead hand”, where the distribution of an estate is conditioned on the beneficiary’s performing or behaving in a certain manner, as laid out in this this paper, “Dead Hand Control: Conditional Bequeaths and Devisements”, link here. 

   

The “dead hand” was often a plot device in Victorian novels, but has generally been less well known in the US in recent decades.  However, there have movies made about the issue, like “The Bachelor” (directed by Gary Sinyor, New Line, 1999), where the beneficiary has to get married within a certain time.  More practical is the expectation that the beneficiary raise the decedent’s or another relative’s children, which has the practical result of expanding the notion of “family responsibility”.  Consider the Disney film "Raising Helen".

  

It is possible for a “dead hand” to set up a test of the beneficiary’s sense of purpose or integrity, if his or her personal values in areas like marriage, relationships, sexuality, or self-expression are challenged.  However, courts in recent years have been more reluctant to nullify dead hand provisions that violate “public policy”, such as requirements not to marry outside of a religion or race.  Eventually, the public policy provision in some states might apply to gay marriage, but that’s probably a decade away at least.

   

Findlaw has a page on the issue, here and is somewhat lukewarm on the practice. 

   

The New York Times has a column on the topic, by John Masik, from March 2014, here.  The executor has to be separate from the beneficiary to monitor the behavior of any beneficiary.  

Thoughts on an upcoming annual physical: for seniors with momentum, less treatment is more; concerns over arrhythmia

As my own annual Medicare physical approaches (Nov. 7 this year), I always wonder if there is the possibility of some kind of disruption based on the exam itself, as opposed to a symptomatic (and, at my age, possibly  suddenly catastrophic) illness.

For example, I have noticed a mild and stable heart arrhythmia for over twenty years.   It never has shown much on the ECG, although the ECG in Minnesota at the end of 2001 (the ING annual physical, that happened right before the layoff) showed signs of damage due to hypertension. That’s when atenolol started.
     

In 2012, the doctor noticed a slow heartbeat and changed the prescription to Losartan potassium.  Right after the medication changed, I did notice an increased tendency for jumpy heart rhythms, which declined back to “normal” with time.  He mentioned the idea of a pacemaker, but it wasn’t pursued.  The exam in 2013 went very well, without much comment. 
  

In 2010, some elevation of the PS antigen was noted, but it went back to normal on its own in 2011, with the stress of mother over with after her passing, and probably a lower fat diet (since there was no caregiver cooking).
  

I believe in my own momentum and in doing little.  That used to be the philosophy when I was growing up. You were dealt a hand, you lived your life, didn’t expect too much at the end, and then you died, because everyone will die of something.  People often reached normal or long lifespans, even with bad health habits, with relatively little medical disruption, until sudden death.  That was viewed as desirable.  So far, I’ve had only one major hospitalization, after an accidental and freakish hip fracture in early 1998 in Minnesota;  with new surgical technology I recovered fully and relatively quickly.  My paternal grandfather died at age 89 after breakfast on a Saturday morning, never missing a day.  My father died of advanced prostate cancer on New Year’s Day, 1986, just before his 83^rd birthday, but he had been ill only four weeks.  But my mother had a long decline, starting with hip fracture in 1996, heart attack and several angina in 1999 which was finally resolved by coronary bypass surgery, and then doing pretty well until starting to decline in 2007, and steeply and requiring care after the middle of 2009 (to pass near the end of 2010, at 97).  On mother’s side, one uncle had a sudden seizure from a brain tumor at 60 and lived eight months.  That might suggest something running in the family, but it hasn’t happened to anyone else, so environmental exposure of some kind must have been involved.   Another maternal uncle died of cardiomyopathy at age 70 in 1995.  He had a sudden cardiac arrest at age 68 walking into a restaurant in South Carolina.   That was never explained, but medication issues (or accidental overdose) can lead to sudden death or sudden arrests. 
  

Physicians today feel pressure to do a lot, partly because of malpractice of other secondary liability concerns, and partly because of reimbursement incentives.  It might be a good thing to look into the arrhythmia, but that would mean many disruptive tests (stress test, echocardiogram, and a Holter Monitor with pre-shaving) and then likely pressure to do something.  I can see the idea of doing something like that in the winter, after New Years, and staying out of circulation socially for six weeks or so if that is necessary.  Any “elective” surgery and hospitalization could disrupt my being online, and I have no “social capital” to draw on.  
  

In a practical sense, I am with the “conservatives” and “The Washington Times” in believing that a lot of seniors do better if left alone – spending little and remaining productive well into old age, possibly before a more sudden end, or shorter period of disability at the very end (which will inevitably come from something).  But we know there are others to consider.  Individual health also relates to public health and safety.
  

Consider driving.  In more recent years, there has been more public attention to senior driver safety than there had been even a decade ago.  In Virginia, and probably in all states, medical professionals can write to the DMV and recommend that licenses be revoked (link here).  That could set up a situation where the senior must consent to a period of lengthy and intrusive tests and surgeries whether he or she really wants them (and needs them for “momentum”).  That could even be medically counterproductive.  Generally, if someone has a seizure, stroke resulting in unconsciousness, or cardiac arrest, the person is not allowed to drive for six months – which may make sense since something has really “happened”.  But could driving privileges be suspended if tests showed that an incident had a higher than usual probability of happening?  This sounds like the public health debate we are having with Ebola. 

Do arrhythmias fall into this area?  WebMD has some guidelines, that factor in the idea that an ICD or a pacemaker (not the same things, link  ) could have been implanted, here. Generally, if a patient has had an episode which required a shock from an ICD (or defibrillator machine), the person is not allowed to drive for six months.  But without such an episode, someone can generally drive a few days after surgery.
 
I used to joke, "never go to the doctor."  You know what happened to David Letterman in 2000.  He did not pass Go, he did not go home.  Right into coronary bypass surgery.  They were all ready for him, and he didn't know he was walking into a trap, to get cracked open like a lobster.  When he came back on the air, he belonged to the Zipper Club.