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withdrawn, slumped in a wheelchair with her head down, chewing on her hand, her speech garbled.”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.

Primary Care Physician’s Perspective on LBD, Wed 7-30, 11am CA time, webinar

The Lewy Body Dementia Association is hosting a one-hour webinar on Wednesday July 30th at 11am CA time.  The speaker is a primary care physician. The topic is “The Primary Care Physician’s Perspective – Could this be LBD?”  Details are below.

If you attend, could you please take notes and share them with me so I
can share them with our group?  I’m not sure that this webinar will be



Upcoming LBDA Webinar
The Primary Care Physician’s Perspective – Could this be LBD?
Wednesday, July 30, 2014, 2:00-3:00 pm ET

Join LBDA for a free, 1-hour webinar on Wednesday, July 30, 2014, at
2:00 PM ET, featuring Charles Driscoll, MD, FAAFP.  Dr. Driscoll is
an emeritus clinical professor of family medicine at the University of
Virginia and a clinical associate professor of family medicine at
Virginia Commonwealth University in Richmond.  He is board certified in family medicine and geriatrics with special interest in dementia and frailty in the elderly.

Together with his wife Jean Driscoll, MS, he founded and facilitated
an LBD support group in Virginia for three years, after both served as
caregivers for close family members with LBD.

Dr. Driscoll will be covering the following topics:

*  The challenges of establishing a diagnosis
*  Symptoms of dementia with Lewy bodies (DLB)
*  How to help your physician make a diagnosis
*  Recognizing an emergency
*  What to expect from your primary care physician

Register today, as space is limited to the first 500 registrants.

Register here:

Partners in Parkinson’s event, Sat Aug 9, 8am to 3:30pm, San Mateo

This “Partners in Parkinson’s” event on Saturday, August 9th, in San Mateo may be of limited interest to those in our atypical parkinsonism community since the focus is Parkinson’s Disease (PD).  There is no charge to attend but advance registration is requested.

Important note: Last week when I registered, the confirmation webpage showed the wrong date.  But the confirmation email had the correct date.  Don’t be confused!

Brain Support Network will have a table at the all-day (8am to 3pm) resource fair.  You can stop by our table and see all of our new print materials on the top resources for LBD, PSP, MSA, and CBD.  Other community groups and movement disorder centers will have tables to share information and materials.

There will be panel sessions and breakout discussions from 9am to
3:30pm.  Breakfast and lunch will be provided. (No idea about the menu and if it will be “friendly” to those with swallowing problems.)

Speakers include Kathleen Poston, MD, movement disorder specialist at Stanford, Brian Fiske, PhD, vice president of research programs at the Michael J. Fox Foundation, and the Bay Area’s Dave Iverson, veteran journalist and patient living with Parkinson’s.

Registration seems to be online only.  See:

Check out this webpage for other event dates in other cities:

Copied below are the details about the August 9th San Mateo event.

See you there!



Partners in Parkinson’s Bay Area

WHO:  People living with Parkinson’s disease and their families

WHERE:  San Mateo Event Center, 1346 Saratoga Drive, San Mateo, CA 94403

WHEN:  Saturday, August 9, 2014, 8:00 a.m. – 3:30 p.m.


Note: A resource fair will be open from 8 a.m. to 3 p.m. for you to
access between and during sessions.

8:00 – 9:00 a.m.    Registration and breakfast
9:00 – 9:15 a.m.    Welcome and Introduction
9:15 – 9:45 a.m.    The Many Faces of Parkinson’s Disease
9:45 – 10:45 a.m.  Seeing a Movement Disorder Specialist: What to
Know, Ask and Expect
10:45 – 11:00 a.m. Morning break
11:00 – 11:45 a.m. Parkinson’s Research: The Road Ahead
11:45 – 12:15 p.m. Moderated Q&A on Morning Sessions
12:15 – 1:15 p.m.   Lunch
1:15 – 2:00 p.m.    Breakout Sessions
2:00 – 2:15 p.m.    Afternoon break
2:15 – 3:00 p.m.    Breakout Sessions
3:00 – 3:30 p.m.    Closing Session: What’s Next?

Living Well with Parkinson’s: A Holistic Approach, Led by National
Presenting Partner The Davis Phinney Foundation

Building Connections with Family, Friends and Community

I’m Still Wondering About…
Partners in Parkkinson’s is a collaboration between The Michael J Fox
Foundation for Parkinson’s Research and AbbVie Inc., a pharmaceutical company.

“Tears in My Coffee: Living with PSP” (new ebook)

PSP folks –

Someone (the author?) recently posted a link to this 21-page Kindle
ebook ($6) on the PSP Forum:

Tears in My Coffee: Living with Progressive Supranulear Palsy
by Shauna Herrington
Published July 2, 2014 as a Kindle ebook
21 pages

The post on the PSP Forum described the book as usual for families
dealing with a new PSP diagnosis.

The author’s husband was diagnosed with PSP about a year ago.  The
author is a retired nurse.

Here’s the description of the ebook, posted on

“Tears In My Coffee” is the story of how we have undergone major
changes and how I found a way to grieve for what is being taken from us everyday.

PSP changes your life not only for the long term, but can change as fast as a few minutes. This book follows our life over the past year and the changes that have been brought about by this disease.

There is very little information published for families about this
incurable brain disease which shares symptoms with Alzheimer’s,
Parkinson’s, and Amyotrophic lateral sclerosis (ALS) diseases all

Progressive supranuclear palsy (PSP) is a rare degenerative disease of the brain.  The disease impairs movements and balance. Many people with PSP also experience changes in mood, behavior, and personality. A decline in cognitive mental processes, such as thinking, memory, attention, and speech, is not uncommon. When these mental changes are severe enough to interfere with everyday activities, they are called dementia.

I hope “Tears In My Coffee” will help others understand what its like when the world stands still and you are still spinning. Many mornings I sit with my cup of coffee and cry silent tears so no one sees the pain this disease has brought into our life.

Living with Progressive Supranuclear Palsy will help you see how the things that suddenly start becoming a part of your world are not the fault of the patient but are caused by this disease and the patient can not control.

PSP takes over the entire family and will change you whether patient or family.  Patients look the same, sound the same, but are not the same, PSP changes everything.

Thus far, there’s been one reviewer, who said that she was disappointed.

To read all of this, go to  Then do a search on the book title.

If anyone gets this book and reads it, please let me know if it’s any
good.  It would be great if someone could share some things they
picked up from the book!