Understanding Behavioral Changes in Dementia

This post will be of interest to those dealing with dementia-related behavior, such as wandering and aggression.

Besides wandering and aggression, this article, “Understanding Behavioral Changes in Dementia,” also discusses sundowning, exercise, and finding caregivers.  The authors give tips for managing behavioral changes, using routines, communicating, moving someone with dementia to a new home, and caring for yourself (the caregiver).

The article was written by Tanis Ferman, PhD.  Dr. Ferman, a clinical neuropsychologist at Mayo Jacksonville, is on the LBDA Scientific Advisory Council.

You can find this terrific article online at:

https://web.archive.org/web/20070308085114/http://www.lewybodydementia.org/AR0507TJF.php

“Drugs for agitation: to use or not to use” (Alz Assoc Article)

This will be of interest to those dealing with agitation.

This article, “Drugs for agitation: To use or not to use?,” appeared in several local versions of the Alzheimer’s Association enewsletter – Winter ’07 issue. It reports on a study published in the New England Journal of Medicine on 10/12/06. I’ll send out a link soon to a news article about the study.

Here’s the link to the full newsletter:

http://www.alznorcal.org/pdfs/newsletterfiles/NORBAY/winter07nbay.pdf (drugs for agitation article is on page 7)

The full article is copied below.

Robin

Drugs for agitation: To use or not to use?
Alzheimer’s Association Newsletter
Winter 2007

News media have reported that some drugs used
to treat agitation, aggression and psychosis were
only about 30 percent effective and had one or
more serious side effects according to a federally
funded study published in The New England
Journal of Medicine, October 12, 2006.

Background. As dementia progresses, many people (not all)
become agitated, aggressive, or delusional, causing distress
to both patient and caregiver. The Alzheimer’s Association
recommends that non-drug interventions be tried before
medications.

When other interventions are ineffective, physicians
prescribe various medications, including Zyprexa, Risperdal
and Seroquel, those investigated in the New England
Journal of Medicine study. These drugs were designed to
treat psychiatric conditions.

The Food and Drug Administration (FDA) labels state that
these medications are not approved for the treatment of
dementia-related psychosis, with a “black-box” warning:
“Elderly patients with dementia-related psychosis treated
with atypical antipsychotic drugs are at an increased risk of
death compared to placebo.”

What is new?
In the editorial accompanying The New England Journal
of Medicine article, Dr. Jason Karlawish states that there is
still a role for these drugs. He points out that they can do
some good for some patients, but they also have some risk
attached – as is the case with almost all medications.

William H. Thies, PhD, Alzheimer’s Association vice
president of medical and scientific relations, adds, “The
decision to use them needs to be thoughtfully considered,
closely monitored and carefully tailored to the situation.”
Close monitoring calls for a working partnership between
caregiver and doctor.

What has not changed?
For sudden increases in agitation or confusion, call your
doctor as soon as possible. These changes may be caused by
physical conditions such as infections, small strokes, head
trauma, pain, or constipation, or by medication side-effects
or interactions.

If the agitation seems to be a worsening of the dementia
itself, try non-drug interventions first. While it is very
difficult for a lone, overtaxed caregiver to manage a highly
anxious patient, the following basic rules are helpful:

* Prevention! Those with dementia are often calmed by
familiar routines, places and faces.

* Identify the triggers. If the person gets agitated in a
confusing situation, take him or her to a quiet place.

* Back off! When the person resists your help, try again at a
calmer time.

* Don’t argue. Respond to someone with delusions (false
beliefs) by showing mild interest, then distracting the person by
introducing activities he or she enjoys.

* Call your allies. A family member or friend can often
change the person’s attention from the focus of anxiety.

* Call us. The Alzheimer’s Association’s Helpline (800-272-
3900) is ready 24/7 to help you resolve difficult problems.

* Protect yourself. If you feel that you are in danger, leave the
room and call 911, or someone who can come immediately.

Resources
The study, with some comments, may be read at
www.alz.org/News/overview.asp.

From the Alzheimer’s Association 24/7 Helpline (800-272-
3900) you can request:

Fact Sheets:
Behavioral and psychiatric Alzheimer’s symptoms”;
“The Use of Medications,” by Gary Steinke, MD;

and the Alzheimer’s Association brochure,
“Behaviors: what causes dementia-related behavior
like aggression and how to respond.”

“Physician’s Guide to PSP” (Mentions of CBD and MSA)

This video guide to medical professionals for diagnosing progressive supranuclear palsy (PSP) is well worth watching.  Note that multiple system atrophy (MSA) is mentioned (around 12:30) as well as corticobasal degeneration (CBD) (around 12:40) along with a description of alien limb syndrome.

This 18-minute diagnostic video, “A Physician’s Guide to PSP,” was announced a few months ago by CurePSP, the new name for the Society of PSP.  You can order the video on a DVD but it’s easier to find it online here:

youtu.be/IXMv919LOWE

[Editor’s note:  the above link was updated in 2012 when CurePSP moved video off its website on to YouTube.]

I found the program understandable to a layperson.

Dr. John Steele, who was one of the MDs who defined the disease PSP, is the first speaker.  There’s some interesting video of supranuclear gaze palsy.  I guess so much time is spent on this because downward gaze palsy is a hallmark symptom.  You probably don’t need a dictionary because the terms used (eg, apraxia, spastic) are described in video form.

Dr. David Williams is the second speaker.  He is one of the leading stars of PSP research and practices in Melbourne, Australia.  (He used to work with Dr. Andrew Lees in the UK.)  He talks about brain structures affected by PSP and the neuropathology of PSP.  (Don’t worry – this doesn’t last long!)

After Dr. Williams, we hear the voice of Dr. John Steele who says:

  • “A population of 100,000 could contain 1-2 diagnosed PSP cases and 4-5 undiagnosed”
  • “This is about 5% of the prevalence of Parkinson’s Disease”
  • “The average survival in PSP is 6-8 years after symptom onset”
  • “This is about 2 years less than for Parkinson’s Disease before the L-dopa era”

Dr. Lawrence Golbe is the third speaker.  He indicates that the facial expression, gait, and speech of PSP are unusual.  He says that the speech of PSPers (spastic and ataxic) is distinctive and occurs “in almost no other condition.”  He says that one of the diagnostic criteria for PSP is falls occurring within the first year.  (I’m going to have to look up again what other neurologists say about that.  My dad did have falls this early but I didn’t think everyone did.)  He always orders a brain MRI.  He sometimes orders a SPECT.

The fourth speaker, Dr. Andrew Lees, notes that the arm swing is often preserved in PSPers.  This is unusual and dissimilar from Parkinson’s Disease (PD). He talks about blepharospasm.  He says that eye movements form an important part of the neurological exam.  An eye exam is shown.

Dr. Lees notes that as part of taking a patient’s history, it’s important to ask about previous history of encephalitis.  History of visual hallucinations, psychosis, and memory loss would indicate the patient may have Dementia with Lewy Bodies.  As part of the physical exam, it’s important to exclude autonomic dysfunction.  Symptoms of autonomic dysfunction are more commonly associated with PD and MSA.  Dr. Lees says that CBD should be considered if there is marked asymmetry of symptoms (such as jerky, tremulous movements in one limb) or alien limb.

The video is also intended for families.  It was produced by CurePSP and the PSP Society of Europe, hence the combination of US and UK researchers.

Here’s a description of the video from the CurePSP website:

“NEW!  A Physician’s Guide to PSP – Diagnostic DVD – An important resource for neurologists, family physicians, and medical professionals created by the PSP Europe Association in the United Kingdom and CurePSP in the United States.  This 18 minutes long video features commentary by top neurologists specializing in PSP, including Lawrence I. Golbe, MD, John C. Steele, MD, and Andrew Lees.”