“Slow Dancing with a Stranger” (recommended book)

Alzforum posted a review of the upcoming book Slow Dancing with a Stranger, by Meryl Comer. The book is about the harsh reality of what it’s like to care for a husband with Alzheimer’s Disease for 20 years.  The reviewer notes:

As she cared for her husband at home, Comer became a virtual prisoner to the disease. The “stranger” of the title is Alzheimer’s, which slowly robbed the couple of their normal lives.

Comer’s husband developed early-onset AD with behavioral symptoms in his 50s.  At first, of course, no one knew what was wrong.  Getting a diagnosis took several years.  Dementia care is not for the faint of heart.

You can find the review here:


Book Review: Slow Dancing with a Stranger
13 Aug 2014

Sounds like a worthwhile book.


Antipsychotics Overprescribed in Nursing Homes (AARP article)

This post is likely only of interest to those who have family members
in nursing homes or skilled nursing facilities, or to those who are
giving antipsychotics to family members.

BSN group member Helen Medsger forwarded this article from a recent AARP Bulletin on to me.  It’s about antipsychotics being
overprescribed in nursing homes.  Unfortunately, Helen’s family
experienced this with their father (with Lewy Body Dementia).




Drug Abuse: Antipsychotics in Nursing Homes
These dangerous medications are prescribed at an alarming rate without the patient’s consent
AARP Bulletin
by Jan Goodwin
July/August 2014

When Patricia Thomas, 79, went into a Ventura, Calif., nursing home
with a broken pelvis, the only prescriptions she used were for blood
pressure and cholesterol, and an inhaler for her pulmonary disease. By the time she was discharged 18 days later, she “wasn’t my mother
anymore,” says Kathi Levine, 57, of Carpinteria, Calif. “She was
withdrawn, slumped in a wheelchair with her head down, chewing on her hand, her speech garbled.” Within weeks, she was dead.

Thomas, a former executive assistant, had been given so many
heavy-duty medications, including illegally administered
antipsychotics, by the Ventura Convalescent Hospital in November of
2010 that she could no longer function. If one drug caused
sleeplessness and anxiety, she was given a different medication to
counteract those side effects. If yet another drug induced agitation
or the urge to constantly move, she was medicated again for that.

“Yes, my mom had Alzheimer’s, but she wasn’t out of it when she went
into the nursing home. She could dress and feed herself, walk on her
own. You could have a conversation with her,” says Levine. “My mother went into Ventura for physical therapy. Instead, she was drugged up to make her submissive. I believe that my mother died because profit and greed were more important than people.”

A Ventura County Superior Court judge agreed that Levine had a
legitimate complaint against the nursing home. In May, attorneys from the law firm Johnson Moore in Thousand Oaks, Calif., joined by lawyers from AARP Foundation, agreed to a settlement in an unprecedented class-action suit against the facility for using powerful and dangerous drugs without the informed consent of residents or family members. “It is the first case of its kind in the country, and
hopefully we can replicate this nationwide,” says attorney Kelly
Bagby, senior counsel for AARP Foundation Litigation.

A national problem

Tragically, what happened to Patricia Thomas is not an isolated
incident. According to Charlene Harrington, professor of nursing and
sociology at the University of California, San Francisco, as many as 1
in 5 patients in the nation’s 15,500 nursing homes are given
antipsychotic drugs that are not only unnecessary, but also extremely
dangerous for older patients. The problem, experts say, stems from
inadequate training and chronic understaffing, as well as an
aggressive push by pharmaceutical companies to market their products.

“The misuse of antipsychotic drugs as chemical restraints is one of
the most common and long-standing, but preventable, practices causing serious harm to nursing home residents today,” says Toby Edelman, an attorney at the Center for Medicare Advocacy in Washington, D.C. “When nursing facilities divert funds from the care of residents to corporate overhead and profits, the human toll is enormous.”

Kickbacks to doctors

Last November, in what the U.S. Department of Justice called “one of
the largest health care fraud settlements in U.S. history,” Johnson &
Johnson and its subsidiaries were fined more than $2.2 billion to
resolve criminal and civil charges because of their aggressive
marketing of drugs, including antipsychotics, to nursing homes, when
they knew the drugs had not been approved by the U.S. Food and Drug Administration (FDA) as safe and effective for a general elderly
population. The corporation also allegedly paid kickbacks to
physicians, as well as to Omnicare, the nation’s largest
long-term-care pharmacy provider. Omnicare pharmacists were
recommending Johnson & Johnson’s drugs, including the antipsychotic Risperdal, for use by nursing home residents.

Back in 2009, Eli Lilly did the same thing with its antipsychotic
Zyprexa, marketing to older people in nursing homes and assisted
living facilities, federal prosecutors charged. In a settlement, the
company agreed to pay $1.4 billion. “This case should serve as still
another warning to all those who break the law in order to improve
their profits,” Patrick Doyle, special agent in charge of the Office
of Inspector General for the U.S. Department of Health and Human
Services in Philadelphia, said at the time.

A report released in March by the inspector general of Health and
Human Services charged that one-third of Medicare patients in nursing homes suffered harm, much of which was preventable. “Too many nursing homes fail to comply with federal regulations designed to prevent overmedication, giving patients antipsychotic drugs in ways that violate federal standards for unnecessary drug use,” Inspector General Daniel Levinson said. “Government, taxpayers, nursing home residents, as well as their families and caregivers, should be outraged — and seek solutions.”

Antipsychotic drugs are intended for people with severe mental
illness, such as patients with schizophrenia or bipolar disorder. As
such, they carry the FDA’s black-box warning that they are not
intended for frail older people or patients with Alzheimer’s or
dementia. In those populations, these drugs can trigger agitation,
anxiety, confusion, disorientation and even death. “They can dull a
patient’s memory, sap their personalities and crush their spirits,”
according to a report from the California Advocates for Nursing Home

Kept in the dark

What’s more, the law requires “informed consent” by a patient or, if
that is no longer possible, by his or her family before such drugs are
administered. Yet advocates say that, all too frequently, this doesn’t
happen. Levine, for example, says she didn’t know about all her
mother’s medications until she transferred her mom to another
facility. “When I saw the list of what she’d been given, I freaked
out. I was upset and angry, in tears,” she recalls.

How can such things happen? One explanation is that many facilities
don’t have enough properly trained staff: Most of the patient care in
nursing homes falls to certified nursing assistants (CNAs) who need as little as 75 hours of on-the-job training to get certified. “Yet if
you want a license to be a hairdresser, you need 1,500 hours of
training,” Harrington points out.

What’s more, CNAs are paid low wages so many of them work long hours. “They are totally exhausted, with extremely heavy workloads,” she says. That leads to high employee turnover and caregivers who don’t know their patients well enough to recognize their needs.

Compounding the problem, many nursing home patients require a high level of care. Some are incontinent, and an estimated 60 to 70 percent have some form of dementia. There should be one CNA for every seven patients, but in some cases, the ratio is 1 to 15 — or even more, Harrington says. There also tend to be too few physicians actually present in nursing homes. “These facilities are highly medicalized, but doctors are rarely there,” says Tony Chicotel, staff attorney for California Advocates for Nursing Home Reform. He says that because of their low rate of reimbursement from Medicare, nursing homes are too often seen as a place where few top doctors practice.

The result of all this can be so-called behavior problems among
patients — which is the explanation nursing homes cite for giving
patients unnecessary antipsychotic drugs, according to the U.S.
Centers for Medicare and Medicaid Services (CMS). And pharmaceutical companies have been aggressively marketing their products as an easy and effective way to control these issues.

“There was a push by drug manufacturers, claiming these medications
work for seniors when they knew, in fact, that it doubled their risk
of death,” Chicotel says.

CMS, which oversees the nursing homes that receive funding from
federal programs, says it has been working to correct deficiencies in
nursing facilities, including the inappropriate use of medications.
The agency achieved the goal of reducing the inappropriate use of
antipsychotic drugs by 15 percent over a recent two-year period, and
hopes to get to a 30 percent reduction in the next few years,
according to spokesman Thomas Hamilton. But Edelman points out that initial goal was reached more than a year late, and some 300,000
patients are still receiving the drugs inappropriately. Hamilton
acknowledges that more needs to be done, but lack of funding from
Congress is making even the most preliminary work difficult.

A better way

Fortunately, a growing number of nursing homes have begun to look for more effective — and more humane — ways to care for patients. Better training for caregivers is key: According to Cheryl Phillips, M.D., a geriatrician at LeadingAge, an organization representing nonprofit services for older people, nursing home staff can be trained to deal with behavior issues thoughtfully and creatively, without resorting to drugs.

She cites an example of a male patient who was spending his days in a
noisy nursing home activity room. One day, he grew more and more
agitated and tripped an aide with his cane. To calm him down, the
staff took him to his private quarters. Over the following days, his
behavior in the activity room became increasingly aggressive; he began randomly hitting caregivers and fellow patients. Each time, he was taken away to spend time in his room.

“The staff initially thought he had become violent and needed an
antipsychotic,” Phillips recalls. “But they ultimately realized that
the cacophony in the activity room was stressing him out. Caregivers
inadvertently rewarded him by giving him quiet time in his room, which is what he wanted. When they did it repetitively, they reinforced his aggressive behavior.” Once the staff discussed the problem and began finding peaceful activities for the patient, the problem was solved — no drugs needed.

Putting patients first

Another success story is the Beatitudes facility in Phoenix, which
dramatically changed its way of handling patients with dementia based on Tom Kitwood’s book Dementia Care Reconsidered: The Person Comes First. “What happens here is not for our systems, our convenience, but for the people we care for,” says Tena Alonzo, the director of education and research at Beatitudes. “People with dementia have disturbances in their sleep/wake cycle, so we let them be comfortable and decide when they want to sleep or eat, or not. Or how they want to spend their time,” she says. As a result, patients stop resisting care, and the facility runs more smoothly.

The Beatitudes’ philosophy is now being taught to a growing number of nursing homes around the country. “We’ve created a softer, gentler
approach, acknowledging that we are not in charge of a person’s life
— they are. In allowing them to retain their dignity, and adopt a
comfort level of care, we’ve had better outcomes,” says Alonzo. That
paradigm shift has not increased operating expenses, or required a
higher staff-to-resident ratio. “We discovered that better care was
better business,” Alonzo says.

For Kathi Levine and her mother, these encouraging developments are coming too late. “I want our lawsuits to impact nursing homes all over the country,” Levine says. “We need to protect our family members. They don’t have a voice, they can’t speak for themselves. So we need to speak out for them and help other people know what to look for. I want to make sure that what happened to my family doesn’t happen to anyone else.”

Jan Goodwin is an award-winning author and investigative journalist
for national publications.

Hippocampal sparing Alzheimer’s (Mayo Clinic)

One of Brain Support Network’s missions is to assist families around the United States with brain donation.  We have helped nearly 200 families donate a loved one’s brain.  Half of the confirmed diagnoses are different from the clinical diagnoses! We often see two diagnoses “wrong” more often than others – corticobasal degeneration and Lewy body dementia. Often, those with supposed CBD or LBD have an atypical form of Alzheimer’s confirmed through brain donation.  And we sometimes see the same pattern in frontotemporal dementia (FTD).

Yesterday, the Mayo Clinic announced that this atypical form of Alzheimer’s — called hippocampal sparing Alzheimer’s — is more widespread than previously thought.  Apparently 11% of all Alzheimer’s cases at the Mayo Clinic brain bank are this atypical form.

Mayo recently defined “hippocampal sparing Alzheimer’s.”  They say it is neither “well-recognized nor treated appropriately.”

We can certainly agree with the “well-recognized” part of their statement.

The press release from the Mayo Clinic is worth checking out as well as the associated five-minute interview with Melissa Murray, PhD, the neuroscientist at Mayo leading research into this atypical form of Alzheimer’s.  Here’s a link:


Plus the Mayo press release is copied below.


Mayo Clinic Press Release
By Kevin Punsky
Atypical Form of Alzheimer’s Disease May be Present in a More Widespread Number of Patients, Mayo Clinic Says
April 30, 2014

JACKSONVILLE, Fla. — Neuroscientists at Mayo Clinic in Florida have defined a subtype of Alzheimer’s disease (AD) that they say is neither well recognized nor treated appropriately.

The variant, called hippocampal sparing AD, made up 11 percent of the 1,821 AD-confirmed brains examined by Mayo Clinic researchers — suggesting this subtype is relatively widespread in the general population. The Alzheimer’s Association estimates that 5.2 million Americans are living with AD. And with nearly half of hippocampal sparing AD patients being misdiagnosed, this could mean that well over 600,000 Americans make up this AD variant, researchers say.

In an oral presentation at the annual meeting of the American Academy of Neurology in Philadelphia, scientists say hippocampal sparing AD often produces symptoms that are substantially different from the most commonly known form of AD, which affects the hippocampus, the center of memory.

The patients, mostly male, are afflicted at a much younger age, and their symptoms can be bizarre — behavioral problems such as frequent and sometimes profane angry outbursts, feelings that their limbs do not belong to them and are controlled by an “alien” unidentifiable force, or visual disturbances in the absence of eye problems, researchers say.

They also decline at a much faster rate than do patients with the most common form of AD.

“Many of these patients, however, have memories that are near normal, so clinicians often misdiagnose them with a variety of conditions that do not match the underlying neuropathology,” says the study’s lead author, Melissa Murray, Ph.D., an assistant professor of neuroscience at Mayo Clinic in Florida.

Many of these patients are diagnosed with frontotemporal dementia, a disorder characterized by changes in personality and social behavior, or corticobasal syndrome, characterized by movement disorders and cognitive dysfunction. Language dysfunction is also more common in hippocampal sparing AD, although patients do not have vocal or hearing deficits.

“What is tragic is that these patients are commonly misdiagnosed and we have new evidence that suggests drugs now on the market for AD could work best in these hippocampal sparing patients — possibly better than they work in the common form of the disease,” Dr. Murray says.

The researchers benefit greatly from one of the largest brain banks in the country — more than 6,500 brain donations — as well as a collaborative environment between neuroscience research and neurology at Mayo Clinic, she says.

Both hallmark proteins of AD — amyloid beta (Aβ), which forms Aβ plaques, and tau, which produces tangles — are found across all subtypes of AD, including hippocampal sparing AD. The researchers developed a mathematical algorithm to classify AD subtypes using tangle counts. “What is fascinating is that all the AD patient subtypes had the same amount of amyloid, but for some reason tau tangles were found in strategic cortical regions disproportionate to the hippocampus.”

In these patients, tau preferentially damages and eventually destroys neurons in parts of the brain involved in behavior, motor awareness and recognition, as well as use of speech and vision, Dr. Murray says.

She says she hopes this research, the second high-profile Mayo study to highlight hippocampal sparing AD, will “open the minds” of clinicians who are trying to diagnose dementia, helping them understand that loss of memory is not present in every AD patient.

“Our studies support the notion that dementia related to AD does not necessarily equate to a loss of memory, and points to the need for more research in amyloid and tau imaging biomarkers to help clinicians accurately diagnose AD — regardless of subtype,” Dr. Murray says.


Medicare Policy Change – No Improvement Requirement

This recent New York Times post from the New Old Age is about the fact that Medicare has changed its policy manual to eliminate the need for improvement to receive physical therapy, speech therapy, etc.  Here’s an excerpt:

In January of 2014, Medicare officials updated the agency’s policy manual — the rule book for everything Medicare does — to erase any notion that improvement is necessary to receive coverage for skilled care. That means Medicare now will pay for physical therapy, nursing care and other services for beneficiaries with chronic diseases like multiple sclerosis, Parkinson’s or Alzheimer’s disease in order to maintain their condition and prevent deterioration.

This is a very important change.  We’ll see how it plays out within Medicare and whether other insurance companies go along with this policy change.

Here’s a link to the full article:


The New Old Age: Caring and Coping
The New York Times
A Quiet ‘Sea Change’ in Medicare
By Susan Jaffe 
March 25, 2014 5:00 AM


Geriatricians question common treatments, including dementia drugs

This is an interesting post in the New Old Age blog of the New York Times about five common treatments questioned by geriatricians.  At the top of this year’s list are cholinesterase inhibitors — such as Aricept, Exelon, and Razadyne — which are prescribed for those with Lewy Body Dementia and some of the other disorders in our group.

See last year’s list of five things here:


Here are some excerpts from the article about cholinesterase inhibitors:

Topping this year’s list is a caution against dementia drugs called cholinesterase inhibitors — Aricept is the most widely used — without following up to see whether they’re really helping.

[While] the drug may produce cognitive improvement that is statistically significant in a clinical trial, “it’s not clear that it’s big enough for a caregiver to even notice, or big enough to make a difference in a patient’s quality of life,” Dr. Lee said. “We’re learning, after more experience with these drugs, that they benefit a minority of patients.”

On the other side of the equation, most patients who take them will experience gastrointestinal problems like nausea, cramping and diarrhea that often cause weight loss. So the society urges extensive discussion before doctors prescribe cholinesterase inhibitors and suggests no more than a three-month trial. If there’s no meaningful improvement by then, there won’t be later. “This is not a medication to start and then forget about,” Dr. Lee cautioned.

Here’s a link to the full article:


Geriatricians Question Five Common Treatments
New York Times
By Paula Span
March 7, 2014 3:49 PM



Imaging Tau with PET Scans

Some news was released yesterday about using a PET scan to detect tau in the brain.  Tau is the protein involved in PSP and CBD.  Tau is one of the two proteins involved in Alzheimer’s Disease; the other is amyloid.

If I’m counting correctly, yesterday’s news is a third approach to detecting tau in the brain with a PET.  This third approach was developed largely by Japanese scientists.  The second approach was developed by UC Irvine and uses Siemens technology.  And the first approach was developed by UCLA but that approach seems to have no endorsement outside of UCLA.  (I was told by some local neurologists that the UCLA approach is a “non-starter.”)

The third approach was described in the journal Neuron yesterday.  Here’s a link to the abstract and the figures and tables from the article, but not the article itself:


From the abstract and highlights of the article, we know that the Japanese researchers used this PET imaging approach to illuminate tau tangles in mice with a tauopathy and in living Alzheimer’s patients, comparing them to normal controls.  They also saw tau illuminated in a corticobasal syndrome patient who did not have amyloid plaques, based on a different PET scan.

I believe this new tau ligand (or radioactive substance) is known as PBB.  This is very confusing because the amyloid ligand is known as PIB.

Below I’ve copied links to two very understandable lay articles on this tau imaging study — one from the BBC and one from Forbes magazine.  The angle in both of these articles is Alzheimer’s Disease as that’s where lots of research dollars are going.




Alzheimer’s brain scan detects tau protein
BBC News
By James Gallagher, Health and science reporter
18 September 2013


New Brain Imaging For Alzheimer’s Disease May Pave The Way For Earlier Diagnosis
Alice G. Walton, Contributor
9/19/2013 @ 12:47PM

Subjective Cognitive Decline (research)

There was an interesting article this week in the New York Times about worldwide research into “subjective cognitive decline” – where an individual believes he/she is suffering from cognitive decline but there is no objective evidence of this.

The article reported that Brigham and Women’s Hospital researchers “found that people with more concerns about memory and organizing ability were more likely to have increased levels of amyloid, a key Alzheimer’s-related protein, in their brains.”  

At Mayo Rochester, something similar was seen:  “those who had a concern about their memory in fact had more likelihood of later developing mild cognitive impairment, an early phase of dementia.”

A German researcher, convinced of the existence of “subjective cognitive decline” for years, said that:

“[In] diseases from arthritis to Parkinson’s, people often feel something is wrong before others notice. In most phases of dementia, family members and friends see deficits, but the disease has usually stolen the person’s ability to recognize them. But at the subjective phase, studies suggest family members may miss problems; the person may feel his mind working harder, but he still functions well.”

 The New York Times article says:  “Experts also are not yet suggesting doctors regularly screen people for ‘subjective cognitive decline’ because much more research is needed and no effective dementia treatment now exists.”

Here’s a link to the article:


Looking for Early Signs of Dementia? Ask the Patient
New York Times
By Pam Belluck
Published: July 17, 2013


Decline in Dementia in Europe

There was an interesting New York Times article this week about the lower rate of dementia in two recent European studies.

I hadn’t planned on sharing the article as it is more about Alzheimer’s than any of the non-AD dementias in our group, but the PBS NewsHour had a very nice interview tonight (July 17, 2013) on this news.  The PBS NewsHour interviewed Dr. Murali Doraiswamy, an Alzheimer’s researcher at Duke University, who was mentioned in the rate of dementia article below.

The PBS NewsHour segment is only seven minutes.  You can find a link to the segment plus a transcript here:


(When I was watching the NewsHour live, the lead-in video showed Dr. Adam Boxer at UCSF.  But today’s segment was not about UCSF research.)

On the NewsHour, Dr. Doraiswamy noted that:

“We have to differentiate is the risk vs. the total numbers.  The total numbers of Alzheimer’s disease are going to climb upwards quite dramatically because older age and the rising number of people who live into their 70s, and 80s and 90s is a huge risk factor for Alzheimer’s.  But within each generation, what we’re seeing is a given person’s risk for developing Alzheimer’s might actually reduce and go down.”

Plus, Dr. Doraiswamy surmised that the decline in dementia was probably due to decline in vascular dementia “because we now have better ways to treat cardiovascular disease.”

Here’s a link to the New York Times article on these research findings:


Dementia Rate Is Found to Drop Sharply, as Forecast
By Gina Kolata
New York Times
Published: July 16, 2013





Recommended Blogs – About Having Alzheimer’s and About the Final Phase of Life

The New York Times has a blog called “The New Old Age.”  It often has good articles on caregiving and aging.  Last Monday’s post is about two recommended blogs — one about having Alzheimer’s Disease, and the other on “the final phase of life.”  Both bloggers are physicians – one retired and one still active.  The blogs are:

“Watching the Lights Go Out”
by David Hilfiker, a 68-year-old retired MD who was diagnosed with Alzheimer’s Disease in September 2012

“Life in the End Zone”
by Muriel Gillick, MD, a geriatrician and palliative care physician who cares for both elderly parents.  She is also the author of a book titled “The Denial of Aging: Perpetual Youth, Eternal Life and Other Dangerous Fantasies.”

I took a quick look; both blogs look very well-written.

Here’s a link to the New York Times article about these two blogs:


The New Old Age: Caring and Coping
Two Blogs Worth Reading
The New York Times
By Paula Span
June 24, 2013, 11:50 am

The New York Times post refers to a Washington Post article about David Hilfiker, who lives in Washington, DC.  Here’s a link to Dr. Hilfiker’s Washington Post article:



Therapy Even if No Improvement – Big Change to Medicare Rules

Back in October 2012, it was reported that a settlement had been proposed that would affect skilled nursing home stays as well as home health and home therapy services for those with Medicare.

This Monday, the New York Times reported that Congress also took action to allow exceptions to what Medicare pays for physical, occupational, and speech therapy.  Plus, the proposed settlement had been approved by the court; Medicare is now prohibited from denying patients coverage for “skilled nursing care, home health services or outpatient therapy because they had reached a ‘plateau,’ and their conditions were not improving.”

This will have an impact on Medicare beneficiaries who have PSP, CBD, MSA, and DLB diagnoses.

The Center for Medicare Advocacy (different from the Centers for Medicare & Medicaid Services), has a webpage devoted to “explaining how to challenge a denial of coverage that is based on the lack of improvement.”  See:


And, the Center for Medicare Advocacy “advises beneficiaries to show a copy of the settlement — also available from the Web site — to your health care provider at your next physical therapy appointment if you are concerned about losing Medicare coverage.”

See a highlighted copy of the settlement:


Here’s a link to the NYT article:


The New Old Age: Caring and Coping
Finances & Legalities 
Therapy Plateau No Longer Ends Coverage
New York Times
By Susan Jaffe
February 4, 2013, 7:49 am