“Understanding Difficult Behaviors”- recommended book

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.”



Excerpts from

“Screaming, Verbal Noises”
Understanding Difficult Behaviors

by Anne Robinson, Beth Spencer, and Laurie White
Published by Eastern Michigan University


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


* 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.


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.


April 2005 FDA Warning on Antipsychotics w/Dementia

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

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:
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”:

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:


Consumers can call: 888-INFO-FDA.


Arctic ground squirrel clears out tau during hibernation

The PSP Family Conference, put on by the Society for PSP (Progressive Supranuclear Palsy), was held last Saturday near SFO.

As I had attended the ’04 PSP Family Conference and had heard Dr. James Tetrud speak before, I had different expectations of what he would say at this year’s conference.  He is the neurologist at The Parkinson’s Institute who probably knows the most about Atypical Parkinsonism disorders, such as PSP, LBD, MSA, and CBGD.  I compared his slides from ’06 to ’04, and was disappointed that there was nothing new to report in the area of research with one exception:  at last Saturday’s conference he mentioned the Arctic ground squirrel.

During a 7-month hibernation, the squirrel’s brain loses many of the nerve-cell connections that govern how it operates.  Tau protein accumulates in the brain — just like with Alzheimer’s Disease and PSP.  (I’m sorry to say that I don’t know the pathology of the other Atypical Parkinsonism diseases.)  Within 2 to 3 hours of emerging from hibernation, there is a wave of neuronal growth and tau is eliminated.  Thus, there appears to be a mechanism to clear tau.

Dr. Tetrud referred to a recent Economist magazine article on the subject.  I consider myself to have excellent follow-through and research skills but I was outdone on both of these fronts by Sam, a support group member who also attended the Saturday conference.  He found the article in the Feb. 4th issue (page 72).  Here’s a link to the article:


Sleeping on it
Similarities between dementia and hibernation suggest a treatment
The Economist
Feb 2nd 2006

It’s interesting reading!  Let’s hope something comes of it…


Points from an expert physical therapist – on PD and parkinsonism

I attended Marilyn Basham’s presentation this afternoon on “Caregiving Made Easy for Parkinson’s Individuals.”  She’s the physical therapist (PT) at The Parkinson’s Institute (TPI).  I picked up a few tidbits at the presentation that I thought I’d pass along.  As the presentation was focused on Parkinson’s Disease (PD), not everything applied to the situations we are dealing with but there were still many interesting points that apply.

Here are the points I found interesting….  (with some of my comments in parantheses)

People with PD and Parkinsonism MUST use a walker or wheelchair to make them as safe as possible.  It’s very important to have mobility and postural strategies worked out with a physical therapist and/or neurologist.

PD is evident when 60-80% of the cells in the basal ganglia have died.

The “automatic motor programs” we have are stored in the basal ganglia.  One of these “programs” is what tells us that to stand up from a low chair, we need to scoot to the edge, put our feet underneath us, lean forward, and push up.  PD folks must either receive cues as to the steps of these programs, or they must practice it so many times that doing it becomes somewhat automatic again.

To overcome freezing (called “gait initiation failure”), you can put masking tape on the floor to provide a visual cue.  Put the tape at thresholds or where ever the person often has the freezing problem.  (Of course this won’t work for those with PSP who have downward gaze palsy.)

A suggested verbal cue to give someone who wants to speak is:  “Swallow.”  (pause to let the person swallow)  “Take a deep breath in and then, at the top of your breath tell me what you want.”  (pause to let this happen)  Swallowing is important because fluid accumulates in the back of the throat and those with PD are not aware of it.  You can give them gum to initiate a swallow response.

Before someone with MSA (or PD with blood pressure fluctuations) stands up, give them a glass of water with salt in it or Gatoraid.  This will increase the blood pressure.  Obviously the person’s diet and blood pressure medication needs to be taken into account before following this suggestion.

We must give time for those with these diseases to process information!  Be patient!  Give long pauses.  Don’t overload them.  Don’t give them more than one complex task at a time.  Walking is a complex task.

(Some of you know that my father and I communicate by our holding up fingers to designate an answer.  Example, “do you want 1 for coffee, 2 for tea, or 3 for nothing,” and I hold up 1, 2, and 3 fingers.  He answers by holding up fingers.  Long after the fingers come up, he may try to verbalize the answer.)  I asked Marilyn why my father could hold up fingers faster than he could verbalize a response.  Marilyn said she didn’t know why but pointed out that parents of small children teach their children sign language long before the children can verbalize.

Dementia is rare in PD.  (It’s definitely common in the Atypical Parkinsonism diseases.)  PD folks may lose their keys but they still remember what keys are and how to use them.  (I thought that was a good story for remembering what dementia is.  My dad, for example, cannot remember how to use an ATM card.  I see the dementia very clearly.)

A patch for Sinemet is in the works.  (Some of your loved ones take Sinemet.)

The head of TPI thinks that PD is the most curable of all the neurodegenerative diseases.  (Let’s hope he’s right because hopefully those diseases related to PD can be cured quickly too.)


Differentiating CBD syndrome from PSP using brain atrophy patterns

Sharon, one of our group members, sent this to me today.  It’s an article about a study done at UCSF that shows that the patterns of brain atrophy are different in progressive supranuclear palsy and corticobasal degeneration.

Many of your loved ones see neurologists at UCSF. In fact, Sharon’s husband is one of the PSP patients in the study.

The abstract is copied below.


Archives of Neurology, January 2006, Vol. 63 No. 1

Patterns of brain atrophy that differentiate corticobasal degeneration syndrome from progressive supranuclear palsy.

Boxer AL, Geschwind MD, Belfor N, Gorno-Tempini ML, Schauer GF, Miller BL, Weiner MW, Rosen HJ
Memory and Aging Center, Department of Neurology, University of California, San Francisco, CA 94143-1207, USA. [email protected]

BACKGROUND: Progressive brain atrophy is associated with the corticobasal degeneration syndrome (CBDS) and progressive supranuclear palsy (PSP). Regional differences in brain atrophy may reflect the clinical features of disease.

OBJECTIVE: To quantify the structural neuroanatomical differences between CBDS and PSP.

DESIGN: A survey of neurologic deficits was conducted in all patients. Voxel-based morphometry was used to quantify structural neuroanatomical differences on magnetic resonance images in each subject group. SETTING: University hospital dementia clinic.

PARTICIPANTS: Fourteen patients who met clinical research criteria for CBD and 15 patients who met clinical research criteria for PSP, who were matched for severity of disease, age, and functional status, and 80 age-matched control subjects.

MAIN OUTCOME MEASURES: Statistically significant differences in regional gray and white matter volume, after multiple comparisons correction, between groups of subjects.

RESULTS: The patients with CBDS displayed an asymmetric (left > right) pattern of brain atrophy that involved the bilateral premotor cortex, superior parietal lobules, and striatum. Progressive supranuclear palsy was associated with atrophy of the midbrain, pons, thalamus, and striatum, with minimal involvement of the frontal cortex. Midbrain structures were more atrophied in PSP than in CBD, whereas dorsal frontal and parietal cortices were more atrophied in CBD than in PSP. The degree of atrophy of the midbrain and pontine tegmentum and the left frontal eye field differentiated the 2 patient groups with 93% accuracy.

CONCLUSIONS: Distinct patterns of brain atrophy exist in CBDS and PSP that can be used to differentiate the 2 diseases. Assessments of brain atrophy in these disorders should be focused on cortical and brainstem ocular motor control areas.


Large display clock

This is in the category of a small tip….

My dad (with PSP) had been getting up in the middle of the night, thinking it was morning.  Probably most of the time this happened he fell because he’s very tired and unsteady on his feet at the wee hours.  Over half of his falls used to occur at 3am or 4am.  I had been addressing the “cause” of the falls.  For example, he would often fall at 3am while putting on his robe in the bathroom.  I moved the robe to right next to his bed so he can put it on while sitting down.  But then I addressed the larger issue of why he gets up in the middle of the night.  I learned that he could not read the time on his alarm clock any more.  The display was too small.

I went to the Peninsula Center for the Blind and Vision Impaired (PCBVI) in Palo Alto, CA and found a large display clock for $26.75.  Their supplier is MaxiAids (www.maxiaids.com or 800-522-6294), who sells the clock for the same price.  It’s item #74852 – AM-FM Clock Radio with Extra Large LED Display.  The numbers are green.  Turns out that some low-vision people can see green better than they can white or red.  Anyway, this clock solved the problem of not knowing what time it was in the middle of the night.  Dad no longer gets up at 3am or 4am so those falls have been eliminated.  (Unfortunately there’s still lots of other falling!)

The PCBVI and MaxiAids also have clocks that talk (say the time).  We might have to go that route if Dad’s vision problems worsen.