Category Archives: PSP

Warning for those with dementia about anticholinergics

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Like Alzheimer’s Disease (AD), those with many other types of dementia have an imbalance of acetylcholine in the brain.  Anticholinergic drugs can be problematic for those with AD and non-AD dementias.

I saw this Q&A recently in my Dad’s AARP Health Care Options newsletter called fyi.

Robin

——————————–

Ask Dr. Reed ([email protected])
AARP Health Care Options fyi (newsletter)
Fall 2006

Question:  My husband has Alzheimer’s disease.  His pharmacist told me that certain medicines could further worsen his memory problems.  Any advice?

Answer:  …You are wise to take steps to ensure that your husband’s mental status is not worsened by the effects of his medicines.  As we have mentioned in previous columns, many of us become more sensitive to medicines as we age.  As a result, a variety of medicines could produce unanticipated effects that could worsen mental status and overall function.

Alzheimer’s disease is characterized by low levels of a chemical that transmits signals between nerves called “acetylcholine.”  As a result, medicines called “anticholinergic” drugs that block the effects of this nerve chemical can be especially problematic for people with Alzheimer’s disease.  Unfortunately, these drugs are very common.  They include:

* Certain antihistamines such as diphenhydramine (Benadryl)
* Certain antidepressants such as amitriptyline (Elavil) and doxepin (Sinequan)
* Medicines for bladder problems such as oxybutynin (Ditropan)
* Muscle relaxants such as carisoprodol (Soma), cyclobenzaprine (Flexeril), and methocarbamol (Robaxin)

I always say to write down the name of every medicine that you or your loved one is taking, and review this list regularly with your doctor and your pharmacist.

“Understanding Difficult Behaviors”- recommended book

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This post might be of interest to those who have loved ones with dementia — all of the LBD, some of the PSP, and some of the CBD (especially late stage) folks…

There are a couple of great books with practical suggestions on how to cope with Alzheimer’s Disease and similar illnesses. One is “Understanding Difficult Behaviors” by Anne Robinson, Beth Spencer, and Laurie White, 1989, published by Eastern Michigan University.

You can purchase the book at local offices of the Alzheimer’s Association, which are in Mountain View, Lafayette, San Rafael, Sacramento, Santa Cruz, etc.

The difficult behaviors this book deals with are: angry, agitated behavior; hallucinations, paranoia; incontinence problems; problems with bathing; problems with dressing; problems with eating; problems with sleeping; problems with wandering; repetitive actions; screaming, verbal noises; and wanting to go home.

Copied below are some excerpts from the four-page section on “Screaming, Verbal Noises.”

Robin

 

Excerpts from

“Screaming, Verbal Noises”
in
Understanding Difficult Behaviors
by Anne Robinson, Beth Spencer, and Laurie White
1989
Published by Eastern Michigan University

POSSIBLE CAUSES

Physiological or Medical Causes
* hunger
* incontinence (wetness, etc)
* need to go to the bathroom
* fatigue
* need for help changing position in bed or wheelchair
* vision or hearing loss that causes misperception of the environment
* impaired ability to speak or be understood
* acute medical problems that result in feeling ill or pain and discomfort

Environmental Causes
* too much noise
* overstimulation or sensory overload
* use of physical restraints
* upset by behavior of other residents

Other Causes
* procedures which are uncomfortable or not understood, such as having an enema, having a dressing changed, being catherized, etc.
* bathing – person may be cold or feel exposed
* dressing – person may be cold or feel exposed
* purpose of mouth care not understood
* touch/turning/repositioning – uncomfortable or not understood
* fear/anxiety
* feeling threatened
* need for attention
* frustration
* boredom/lack of stimulation

COPING STRATEGIES

* Have a good medical evaluation to check for illness, infections, pain/discomfort, or impaction

* Provide adequate meals/snacks to minimize hunger

* Institute regular toileting schedule to minimize incontinence

* Change promptly after incontinent episodes

* Try rest periods to minimize fatigue

* Make sure there are frequent (at least every 1-2 hours) position changes if person is bedridden or restrained in chair

* Maximize sensory input. (Check to see whether hearing aids and eyeglasses are in place and working properly.)

* Lower stress; create a relaxing environment:
– minimize noise
– avoid overstimulation/sensory overload
– avoid use of restraints
– play soft, soothing music

* Use relaxation strategies to minimize fear, threat, anxiety. For example:
– try massage/therapeutic touch, stroking person’s head, arms, hands
– try placing your arms around the person and gently rocking back and forth
– talk in a soothing voice
– play soft, soothing music or soothing sounds such as tape of rainfall, waves breaking on shore, etc.

* Try these communication suggestions:
– approach person with soothing voice; call person by his/her name; identify yourself
– explain/prepare person for what is to be done using simple, clear, short sentences
– break task into short steps briefly explaining each one
– think of other ways for the person to communicate, such as using a bell. This can enhance the person’s sense of security by feeling that he/she is able to communicate needs to caregiver

* For staff in long term care settings:
– use consistent routines for activities such as bathing, meals, getting ready for bed; keep to the same schedule each day
– identify staff who work well with certain individuals. Consistency in staffing is important.
– plan time to socialize with the person for a few minutes in addition to assisting with activities of daily living
– encourage participation in meaningful activities to minimize boredom and frustration.

* Softly read to person.

* Medication should be used cautiously when other interventions have been unsuccessful and when the vocal behavior is very stressful to the caregiver(s) and/or residents living in the area. This medication should be monitored carefully by a physician/psychiatrist.

OTHER CONSIDERATIONS

Vocal behaviors are most commonly seen in the later stages of progressive dementia. Many people who shout or cry out are physically immobile – wheelchair or bed-bound. The underlying problem is the person’s inability to communicate his/her needs, wishes, thoughts, etc.

 

Article on Alternative Therapies and PD

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PSP Forum –
Sorry for the screwy formatting of this post. These are two emails below that I sent in August ’06 to the local (SF Bay Area) support group on “alternative therapies” (including CoQ10) and Parkinson’s Disease. (I thought the author worked at Scripps but the institution is Cedars-Sinai.) It’s just easier to copy-and-paste rather than re-work the two emails. If you are interested in seeing these sorts of posts from me, note that I am a regular poster on pspinformation.com (Yahoo!Groups). I don’t regularly come to the Forum (because I dislike using anything but email to post and read).
Thanks,
Robin

Date: Wed, 23 Aug 2006 18:38:47 -0700
To: Local Support Group
From: Robin Riddle <[email protected]>
Subject: Fwd: “Alternative Therapies” & PD (Co-Q10, vitamin C, creatine, etc)

This updated email will be of interest to those considering NADH, glutathione, massage therapy, and exercise. There’s also a resource list for additional info on alternative therapies.

The “Alternative Therapies” article provided answers to seven questions. I found an earlier article by the same author, Dr. Jill Marjama-Lyons, that had ten questions. Perhaps three questions were eliminated to fit the article on one page in the APDA Newsletter Spring 2006. The earlier article was written perhaps in 2004 or early 2005. Here are the three new questions along with the exercise question answered again (because the earlier article gave a longer answer), a resource list (books, etc) for holistic therapies (“holistic” is the preferred term), and some info on the author:

Should persons with PD take NADH? Similar to Co-Q10, NADH (nicotinamide adenine dinucleotide hydrogen) is an enzyme that is involved in energy production of living cells. NADH is not a proven treatment for Parkinson’s disease. Several open-label (patients and examiners were not blinded) studies have shown motor improvement in persons with PD who took NADH. One small double-blinded, controlled study of 10 persons with Parkinson’s disease who took intravenous NADH did not indicate that any improvement occurred in patients.

Should a person take IV(intravenous) glutathione for Parkinson’s? Glutathione is not an approved treatment for Parkinson’s disease. Similar to Co-Q10, glutathione levels have been shown to be lower in persons with PD. Despite many personal stories of patients feeling better with use of IV glutathione, currently there are no published controlled studies proving or disproving it as a therapy for PD.

Can massage therapy help people with Parkinson’s disease? Some persons with PD report massage therapy to lessen muscle stiffness (rigidity) and pain, though the benefit is often transitory and last a few hours or days.

Does exercise really make a difference? Exercise of any kind that does not increase one’s risk of falling is always recommended to increase endurance, improve delivery of oxygen to the brain, heart and muscles, increase muscle strength and mass, and improve coordination, balance and flexibility. Exercises such as yoga and tai chi focus on the mind-body connection and improve balance and mobility for persons with Parkinson’s and many PD centers and health clubs offer these exercise classes. Even for someone with advanced Parkinson’s disease, exercise can make a big difference; chair and bed/floor stretches/movements as well as swimming can be performed by almost anyone. (Note from Robin: the last sentence is not in the APDA Newsletter Spring ’06.)

Resource List for Holistic Therapies
(Note from Robin: the author of the article has a book listed below – third item down. It was recommended to me by someone who used to work with Dr. Marjama-Lyons at Cedars-Sinai Medical Center.)

The American Holistic Health Association’s Complete Guide to Alternative Medicine, by William Collinge, M.P.H., Ph.D.

Alternative Medicine: The Definitive Guide, edited by Burton Goldberg (Future Medicine, 1998), features over 400 holistic practitioners

What Your Doctor May Not Tell You About Parkinson’s Disease: A Holistic Program for Optimal Wellness, by Jill Marjama-Lyons, MD and Mary Shomon (Warner Books, 2003)

PDR for Herbal Medicine, (First Edition, 1999) Medical Economics Company

Prescription for Nutritional Healing, by James Balch, MD and Phylis Balch (Avery Penguin Putnam, 2000)

Tyler’s Herbs of Choice: The Therapeutic Use of Phytomedicinals, by James E. Robbers and Varro E. Tyler

Eat Well, Stay Well With Parkinson’s Disease,by Kathrynn Holden, M.S., R.D. (Five Star Living, 1998)

The Brain Wellness Plan, by Jay Lombard, M.D. and Carl Germono

American Holistic Health Association P.O. Box 17400, Anaheim, California 92817 / (714-779-6152/ www.ahha.org

NIH National Center for Complementary and Alternative Medicine (NCCAM) 888-644-6226 / www.nccam.nih.gov

Mind Body Medical Institute 110 Francis St., Boston, Massachusettes 02215 / (617-632-9530) / www.mbmi.org

American Association of Oriental Medicine 433 Front St., Catasauqua, Pennsylvania 18032 / (888-555-7999) / www.aaom.org

Acupuncture Page Listing licensed acupuncturists in each state, www.acupuncture.com

The Homeopathy Home Page www.homeopathy.com

Nutritional Web Site www.nutrition.about.com

About the Author: Dr. Marjama-Lyons received her bachelors degree in psychology from the University of North Carolina in Chapel Hill and her medical degree from S.U.N.Y Health Sciences Center in Syracuse, NY. She completed her internship at the University of Rochester and her neurology residency at the University of Arizona followed by a fellowship in Parkinson’s disease at Kansas University. She was assistant professor and medical director of The Parkinson Center at the University of Florida in Jacksonville, and currently is regional director of PADRECC (Parkinson Disease Research Education and Clinical Center) at the Albuquerque VA Hospital, Director of the NPF Parkinson Outreach Program serving Navajo persons with Parkinson’s and medical director of a new Deep Brain Stimulation program in Albuquerque. She is co-author of What Your Doctor May Not Tell You About Parkinson’s Disease: A Holistic Program for Optimal Wellness published by Warner Books (February 2003) and author of the National Parkinson Foundation Medication and Deep Brain Stimulation Manuals. She is dedicated to patient education and believes in a holistic approach to care and life.

(Note from Robin: The author’s name was misspelled in the APDA Newsletter Spring ’06.)

April 2005 FDA Warning on Antipsychotics w/Dementia

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This FDA black box warning from April 2005 applies to everyone with
dementia.

It addresses these medications: olanzapine (Zyprexa), aripiprazole
(Abilify), risperidone (Risperdal), quetiapine (Seroquel), clozapine
(Clozaril), ziprasidone (Geodon), and Symbyax.

Here’s the FDA warning from last year:
https://web.archive.org/web/20050423213000/http://www.fda.gov/cder/drug/advisory/antipsychotics.htm
FDA Public Health Advisory
Date created: 4/11/05
Deaths with Antipsychotics in Elderly Patients with Behavioral Disturbances

The Food and Drug Administration has determined that the treatment of
behavioral disorders in elderly patients with dementia with atypical
(second generation) antipsychotic medications is associated with
increased mortality. Of a total of seventeen placebo controlled trials
performed with olanzapine (Zyprexa), aripiprazole (Abilify), risperidone
(Risperdal), or quetiapine (Seroquel) in elderly demented patients with
behavioral disorders, fifteen showed numerical increases in mortality in
the drug-treated group compared to the placebo-treated patients. These
studies enrolled a total of 5106 patients, and several analyses have
demonstrated an approximately 1.6-1.7 fold increase in mortality in
these studies. Examination of the specific causes of these deaths
revealed that most were either due to heart related events (e.g., heart
failure, sudden death) or infections (mostly pneumonia).

The atypical antipsychotics fall into three drug classes based on their
chemical structure. Because the increase in mortality was seen with
atypical antipsychotic medications in all three chemical classes, the
Agency has concluded that the effect is probably related to the common
pharmacologic effects of all atypical antipsychotic medications,
including those that have not been systematically studied in the
dementia population. In addition to the drugs that were studied, the
atypical antipsychotic medications include clozapine (Clozaril) and
ziprasidone (Geodon). All of the atypical antipsychotics are approved
for the treatment of schizophrenia. None, however, is approved for the
treatment of behavioral disorders in patients with dementia. Because of
these findings, the Agency will ask the manufacturers of these drugs to
include a Boxed Warning in their labeling describing this risk and
noting that these drugs are not approved for this indication. Symbyax, a
combination product containing olanzapine and fluoxetine, approved for
the treatment of depressive episodes associated with bipolar disorder,
will also be included in the request.

The Agency is also considering adding a similar warning to the labeling
for older antipsychotic medications because the limited data available
suggest a similar increase in mortality for these drugs.

————————

Here’s an article written on the FDA warning in the “Senior Journal”:

https://web.archive.org/web/20130217011235/http://www.seniorjournal.com/NEWS/Alzheimers/5-04-14Antipsychotic.htm
FDA Warns Antipsychotic Drugs Dangerous to Elderly With Dementia

April 14, 2005 – The Food and Drug Administration (FDA) this week issued
a public health advisory to alert health care providers, patients, and
patient caregivers to new safety information concerning an unapproved
(i.e., “off-label”) use of certain drugs called “atypical antipsychotic
drugs.” These drugs are approved for the treatment of schizophrenia and
mania, but clinical studies of these drugs to treat behavioral disorders
in elderly patients with dementia have shown a higher death rate
associated with their use compared to patients receiving a placebo
(sugar pill).

The advisory applies to such antipsychotic drugs as Abilify
(aripiprazole), Zyprexa (olanzapine), Seroquel (quetiapine), Risperdal
(risperidone), Clozaril (clozapine) and Geodon (ziprasidone). Symbyax,
which is approved for treatment of depressive episodes associated with
bipolar disorder is also included in the agency’s advisory.

FDA is requesting that the manufacturers of all of these kinds of drugs
add a boxed warning to their drug labeling describing this risk and
noting that these drugs are not approved for the treatment of behavioral
symptoms in elderly patients with dementia. Patients receiving these
drugs for treatment of behavioral disorders associated with dementia
should have their treatment reviewed by their health care providers.

In analyses of seventeen placebo-controlled studies of four drugs in
this class, the rate of death for those elderly patients with dementia
was about 1.6 to 1.7 times that of placebo. Although the causes of death
were varied, most seemed to be either heart-related (such as heart
failure or sudden death) or from infections (pneumonia).

The atypical antipsychotics fall into three drug classes based on their
chemical structure. Because the increase in mortality was seen with
atypical antipsychotic medications in all three chemical classes, the
agency has concluded that the effect is probably related to the common
pharmacologic effects of all atypical antipsychotic medications,
including those that have not been studied in the dementia population.

The agency is considering adding a warning to the labeling of older
antipsychotic medications because limited data also suggest a similar
increase in mortality for these drugs. The review of the data on these
older drugs, however, is still on-going.

You can find patient information sheets and healthcare provider sheets
on all of the drugs mentioned at this FDA web page:

https://web.archive.org/web/20070315062022/http://www.fda.gov/cder/drug/infopage/antipsychotics/default.htm

Consumers can call: 888-INFO-FDA.

 

3 Forms of PSP – RS, PSP-P, and PPFG

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The Society for PSP had an International PSP Resarch Symposium on 11/17/05, right after the annual meeting of the Society for Neuroscience in Washington, DC.  The latest issues of the PSP Advocate has an interesting series of articles on some of the presentations made by scientists at the Symposium.

One scientific abstract I found worthwhile was written by David Williams, MBBS, FRACP, of the Queen Square Brain Bank (QSBB), the Sara Koe PSP Research Center, etc., London.

Dr. Williams said that clinicians can use some key differences between PD and some types of PSP in differentiating PD from some types of PSP in a clinical setting.  Specifically, the “timing of falls, the presence of visual hallucinations and testing of smell should be helpful in distinguishing PSP-P and PPFG from PD.”  (PD patients start falling later, nearly half have sustained visual hallucinations, and a decreased sense of smell.)

Also, he identified three distinct types of PSP:

  • Richardson’s Syndrome (RS):  early onset of postural instability and falls, gaze difficulties, and dementia.  54% of cases in the study.
  • PSP-parkinsonism (PSP-P):  non-symmetrical symptom onset, tremor, and a moderate initial therapeutic response to levodopa.  32% of cases in the study.  Obviously this type is often confused with Parkinson’s Disease.
  • Primary progressive freezing gait (PPFG):  early onset of gait freezing without other neurological signs. 4% of cases in the study.

Here are some excerpts from the scientific abstract about survival time and other symptoms:

“…We have recently identified two apparently distinct clinical types of PSP by analyzing clinical case notes of patients with a pathological diagnosis, archived at the Queen Square Brain Bank, London. We have named these two clinical types: Richardson’s syndrome (RS) and PSP-Parkinsonism (P).

Disease duration in RS was shorter (average 5.9 vs. 9.1 years), falls occurred earlier and age at death was younger (72.1 vs. 75.5 years) than in PSP-P. …

Primary progressive freezing gait (PPFG) … had longer disease duration (average 12.8 years) and late onset of gaze palsy and dementia compared with RS.

Other clinical analysis at QSBB has shown that sustained visual hallucinations are exceedingly rare in PSP (3%), but relatively common in Parkinson’s disease (PD, 49%). A decreased sense of smell is usual in Parkinson’s disease but not common in PSP. The time from symptom onset to first fall is early in PSP: 57% of patients with PSP fall within two years, 
compared to 6% with PD. The timing of falls, the presence of visual hallucinations and testing of smell should be helpful in distinguishing PSP-P and PPFG from Parkinson’s disease in the clinic…”

You can find this scientific abstract and the related lay abstract along with all the other articles online at:

www.psp.org/media/pdf/1q2006.pdf

Robin