Study on caregiver burden, AFTD Newsletter Summer ’09

This article will likely be of interest to all caregivers, not just those dealing with dementia.

The Association for Frontotemporal Dementias has an interesting article on the “caregiver burden” in its Summer 2009 newsletter, which I just received in the mail. “Caregiver burden refers to the strain caregiving exerts on the psychological, physical, financial and spiritual well-being of the caregiver.” Some of the researchers’ findings were:

* The caregiver burden was similar if a loved one was living in a nursing home or at home.

* The “caregivers who were inclined to sacrifice themselves in their caregiving role were those who had most psychological problems and least quality of life. We expect that short psycho-educative sessions for the caregiver on selfcare…and paying attention to the barriers a caregiver may experience in accepting support, may improve the balance between caring for the patient and caring for the self.”

* “For psychological and physical well-being it is important to grieve along the way. ”

* Over a two-year period, “caregivers reported an increase in negative, non-supportive social interactions. It would thus seem that….coping strategies may damage potentially supportive relationships.”

FTD is the second most common form of dementia affecting the middle aged. CBD is considered a sub-type of FTD, while PSP is considered a related disorder. Because there are many similarities between CBD, PSP, and FTD, they are often confused for each other. One person in our local group had a clinical diagnosis of PSP and a pathological diagnosis of FTD.

Here’s the article and a link to the newsletter.

Robin … etter1.pdf –> see page 8

Burdening Care: A study on informal caregivers of frontotemporal dementia patients
By Samantha Riedijk, PhD, Erasmus Medical Centre, Rotterdam, The Netherlands
AFTD Newsletter, Summer 2009

In their search for disease causing genes, researchers of the Erasmus MC were struck by the clinical picture of FTD. The
behavior of the patient was most painful to caregivers, especially during the period when the (right) diagnosis was yet to be made. Caregivers and the social environment of the patient had great difficulty understanding the problematic behavior
of the patient. Support programs for dementia caregivers did exist; however, these were focused on older caregivers of
Alzheimer’s Disease patients. Not surprisingly, the FTD caregivers indicated they could not find the support they needed.
We realized this specific group of FTD caregivers needed more attention and initiated this study.

We started our research into the burden of FTD caregivers in order to investigate how these caregivers were keeping up, and to generate recommendations regarding how to best support them. Caregiver burden refers to the strain caregiving
exerts on the psychological, physical, financial and spiritual well-being of the caregiver. A total of 63 FTD patients and
their caregivers participated in our two-year follow-up study.

Support after institutionalization
Of the FTD patients included in our study, 34 were living in a nursing home at the start of our study and 29 were living
and cared for in their home. Strikingly, both groups of caregivers reported similar caregiver burden. A possible explanation
may be that despite the fact that caregivers had fewer tasks; they continued to worry over the patients. In the Netherlands, some nursing homes offer group sessions to caregivers guided by a trained psychologist. Our findings underscore the need of such provisions.

A caregiver may employ a variety of strategies in coping with the caregiving situation. Remarkably, nearly all caregivers
tended to increase their depressive reaction pattern during the two years we followed them. This pattern implies caregivers felt more pessimistic about the future and unable to influence the hopelessness of their situation. Furthermore,
caregivers reported increased emotional expression of negative emotions such as anger and frustration. Simultaneously,
caregivers reported an increase in negative, non-supportive social interactions. It would thus seem that these coping strategies may damage potentially supportive relationships. We suggest professionals assess the coping strategies the caregiver employs and aid the caregiver in coping more adequately if necessary.

Caregiver motivation
In an in-depth interview we asked caregivers what motives they had for providing such intense care. Most caregivers
indicated they provided care because they felt this was their marital duty. The second most stated motivation was the love the caregiver felt for the patient. Some caregivers indicated that it was in their nature to provide care and others revealed that it was only by seeking enough distraction they were able to provide care.

We followed the FTD caregivers and patients during a period of two years, during which most of the FTD patients reached the end-stage of the disease. However, FTD caregivers reported stable levels of psychological, physical well-being and the quality of their relationship, and physical health complaints had even decreased somewhat. We suspect the ‘response
shift’ phenomenon may explain the stable report of well-being and relationship quality. Response shift implies that people adapt to the hardships in life by resetting their internal standards. Instead of valuing a career and health, a caregiver may now experience quality of life from small things such as a beautiful sunset or unexpected phone call from a friend. From these findings we may protract a hopeful message to caregivers at the beginning of their caregiving career, which is that in time they will find ways to experience quality of life and satisfaction from their relationship in spite of FTD.

Finally, we discovered that the FTD caregivers who were inclined to sacrifice themselves in their caregiving role were those who had most psychological problems and least quality of life. We expect that short psycho-educative sessions for
the caregiver on selfcare; what it implies and how to do it, and paying attention to the barriers a caregiver may experience in accepting support, may improve the balance between caring for the patient and caring for the self.

Unprocessed grief
There may be other barriers withholding FTD caregivers from providing good care to themselves. Many caregivers
experience inner conflict when they mourn a loved one who is still alive. For psychological and physical well-being it is
important to grieve along the way. Health care professionals may contribute by providing psycho-education on grieving and actively offering grief counseling.

Conclusions and recommendations
A number of issues warrant special attention in supporting FTD caregivers. First of all, an assessment of the caregiver’s
coping strategies should be made. Second, it should be explored whether the caregiver is maintaining a balance in
caring for the patient and caring for himself. Third, we recommend addressing the processing of grief as an inherent aspect of losing a loved one to dementia.

Dr. Samantha Riedijk is a medical psychologist at the clinical genetics department of the Erasmus Medical Centre. She lives with her husband and two children in a Rotterdam suburb.

Caregiving with Love through Neurodegenerative Disease – Webinar Notes

Today, CurePSP ( hosted a webinar on caregiving with Janet Edmunson. It was titled “Caregiving with Love through a Neurodegenerative Disease.”

The presenter was Janet Edmunson.  Janet’s book is called “Finding Meaning with Charles” and is about her caregiving experience for her husband Charles.  Her website — — is worth checking out.  She visited the Bay Area a year ago, and met with some of our support group members and at various other events.

These are the notes I took during the webinar.
The notes are divided into these sections:

* Intro/Timeline – this is of general interest as it’s short

* Symptoms – these are likely of most interest to those dealing with PSP and CBD but those dealing with MSA may find some relevance

* Affirmations – these are of general interest to those dealing with PSP, CBD, MSA, and LBD

* Questions and Answers –  these are likely of most interest to those dealing with PSP and CBD but those dealing with MSA may find some relevance.  (There was one question on LBD.)

* CurePSP+ Overview – this will only be of interest to those dealing with PSP, CBD, and perhaps MSA



Robin’s Note on

Webinar Presenter – Janet Edmunson
Chair of the Board, CurePSP
Author of “Finding Meaning with Charles”


Her late husband Charles developed his own mission statement and read it every day:  “I will make a significant different in the world by bringing grace with integrity into the lives of others.  Therefore, through a disciplined focus, I will apply my life to bringing peace for people who are in turmoil…”

Charles wrote a book called “Paradoxes of Leadership” in the last years of his life.

Charles developed had his first symptoms in 1995 at the age of 45.  First symptoms are trouble with stairs.

1997 they saw Dr. Litvan at NIH.  She suggested CBD.

1998 they saw a group of MDS at Boston Teaching Hospital.  Diagnosis was PSP.

2000:  Charles fought brain disorder for 5 years.  Upon autopsy, it was confirmed that he CBD.


Symptom:  eye movement problems
No peripheral vision or depth perception
Syncopated, double vision, no focus
Problem driving (didn’t know where he was in space)
Reading problems (tracking)

Symptom:  fine motor movements
Buttoning buttons, tying ties
Writing (squiggly and small)
These are called “cortico-sensory problems.”  They are classic symptoms for CBD.

Symptom:  rigidity and unsteady gait
Extremely stiff  (brain caused frozen back muscles to contract at same time)
Neck hyper-extended
Lost ability to run
Lost ability to walk, eventually

Symptom:  not many falls
Falls when jogging
This is a bit different with PSP where falls can be frequent

Other symptoms:
Stiff, unsteady gait
Out of bed
Symptoms started out one-sided  (typical with CBD)
Apraxia – couldn’t do purposeful movements, such as clapping hands
Essential tremor – especially when reaching
Alien limb – foot didn’t feel connected to body and arm would float up  (typical with CBD)
Bladder incontinence started early on.  Charles might’ve gotten to the restroom in time but couldn’t get his trousers down in time.

Symptom:  speech
Slurred, jumbled, though Charles didn’t think it was slurred
Just gave up

Symptom:  swallowing
Straws, sippy cups
Thickening liquids
Pills in pudding and apple sauce
Chopped food into small pieces
He’d “pass out” while chewing.  After awhile, he’d start chewing again.  Happened frequently.  Seizures?
Based on a swallow study, some of the food was being pocketed.  They would tell Charles to swallow a second time.
She recommends a swallow test

Symptoms:  cognitive
Word find
Slowed thought-processing  (this requires patience from caregivers)
Perseveration, where Charles would put the same word (“process”) in every sentence.  (To resolve this, they would have to get Charles off track.)
Yes/No backwards

Symptoms:  behavioral
Depression.  No antidepressants helped.  Finally, an atypical antipsychotic called Seroquel helped with the depression and sleep issues.
Sleep issues.  Charles would wake up every hour!
Obsessions with time and Beatles music
Inappropriate behaviors

Symptoms:  ADLs
Toileting.  Charles sat for 30 minutes on the toilet.
Constipation.  Lactulose and a suppository helped.
Showering.  She recommends a shower chair with a sliding seat.
Washing and combing hair
Brush teeth.  Very hard because Charles would clamp down on the tooth brush.  They got a bite block from the dentist.
Eating.  Charles wanted to eat on his own.  It was a mess with food everywhere.  He eventually had to accept help.
Transfers from the bed, to a recliner, and to a wheelchair.  They were taught how to do transfers by an OT.  They used a Hoyer lift later on (with hospice).

What could’ve caused this?  We don’t know.
Family history?  Dad had PD, Mom had AD.
Chemical exposure?
Heart disease or treatments?
Very low-fat diet?  (You need fat for your brain function.)
Diet sodas that used sacchrine?
Gum disease?
Tick bites?  Charles was never tested for Lyme Disease.
Sleep issues?  Charles had sleep apnea.
Mobile phone use?

She encourages those with PSP (who can still talk or communicate) to enroll in Dr. Litvan’s PSP study.  See


“When life kicks you, let it kick you forward.”  (Message from someone with breast cancer.)

Affirmations:  positive messages; uplift; inspire

Caregiving Affirmation #1:  hold on to your passions because they are the essence of who you are
Examples:  hobbies, being with friends, genealogy

Caregiving Affirmation #2:  I can make it through the difficult transitions of this disease
First hard transition for Charles was not driving
Another hard transition for Charles was not walking and using a wheelchair
Another hard transition for Charles was accepting an aide

She suggests that family members allow others to help:  don’t try to do all the caregiving yourselves!
Make a list of tasks that you’d like to have done.  Whenever someone says “is there anything I can do for you?,” take out the list and say “can you do this?”
See to allow family and friends to help

Caregiving Affirmation #3:  explore life’s adventures together to store up fond memories that will sustain you
Example:  celebrate your anniversary every month
Example:  dinner with friends at your house, with Subway sandwiches, paper plates, and paper cups

Caregiving Affirmation #4:  I will give myself credit for staying strong despite being pushed to my limits

Caregiving Affirmation #5:  I will give myself grace when I occasionally blow it

Caregiving Affirmation #6:  I will expect that some people will find it difficult to visit my loved one.  That’s OK — it doesn’t mean that they’ve stopped caring.
Consider encouraging visitors to come over in pairs so that they can talk and your loved one can listen in

Caregiving Affirmation #7:  I will remember that the difficult personality changes are not my loved one — they are the disease

Caregiving Affirmation #8:  I will consider hospice sooner versus later; the support will bring me relief

Caregiving Affirmation #9:  It’s perfectly normal to grieve even before my loved one dies
You grieve with each loss.
Janet bought a grief book even before her husband Charles died.

Caregiving Affirmation #10:  Look for the gifts that only this type of tragedy can afford
Caregivers can gain patience
Caregivers can make new friends at support groups
One gift – the ability to say “goodbye”

Last thought from Charles’s boss:  “May this [disease] make you better, not bitter.”

QUESTIONS AND ANSWERS  (answers are by Janet Edmunson, unless indicated)

Q:  Why does it take so long to get a diagnosis?

A:  To get it right, probably isn’t as important as we think it is.  For the person with the disease, getting a diagnosis is very important.

It takes time for enough symptoms to appear so that a diagnosis can be made.

Many people start with a primary care physician, who has probably never seen another person with these diseases.  Even many neurologists haven’t seen people with this disorder!

Get a DVD from CurePSP to give to your MD!  [You can find it here:]

Q:  Where can I find an online group of caregivers?

A:  There’s the PSP Forum at

There are a few Yahoo!Groups available:  ShyDrager, PSPinformation, cbgd_support.  Look in the health section on Yahoo!Groups.

[Robin’s note:  There are four Yahoo!Groups that deal with MSA:

“ShyDrager” –

“Multiple System Atrophy” –

“idcircle” –

“ChristianMSAGroup” – ]

Q:  How did you remain so positive?  I don’t think it is reasonable that someone can remain as upbeat as you did during your caring for Charles.

A:  Part of it is Janet’s optimistic nature.  What’s the alternative?  See “Learned Optimism” by Martin Seligman.  He says that optimism energizes.

Q:  What did the brain autopsy show?

A:  The pathologist said that the diagnosis was hard for her to finalize.  It looked like both PSP and CBD, but more like CBD.  Charles also said hardening of the blood vessels in the brain.

See info on brain donation here:

Talk about brain donation now!  Be sure that all the paperwork is handled about 2 months before your loved one dies.

CurePSP pays for most of the charges associated with brain donation.  Families often have to pay a local pathologist for the extraction.  CurePSP can reimburse families for part of these costs.  [Robin’s note:  this reimbursement is available to PSP, CBD, and MSA families only.]

A by John Burhoe (CurePSP Outreach Committee Chair):  Lou’s brain was donated.  Hospice did a lot of groundwork on the brain donation arrangements.

Q:  How did you balance working fulltime and caring for Charles?

A:  Janet had a team of aides.  Because she couldn’t afford 7×24 aides, she had some volunteer aides.  Hospice provided some aides.

A by John Burhoe:  John was able to work at home.

Q:  Where can I find the latest information on PSP?

A:  See  In particular, find the Guide or Guidebook.  This can be downloaded for free or it costs $10.  [See:]

Also get on the CurePSP newsletter mailing list.  It comes out quarterly.  This will keep you up to date on research.

Tune in to the frequent webinars, organized by Larry Schenker.

Also see (for MSA), (for LBD), (for CBD).

Call Vera James with the Shy Drager Support Group (MSA).

Call any of the “communicators” listed.  It doesn’t matter if they are in a different state than the state you live in.

A by John Burhoe:  The website is being updated and will be launched at the end of the year (November) or early next year.  All these webinars will be available on

All of the support groups are listed by state.  And there are “communicators” as well, listed by state.

Other sources of support:  physical therapy facilities, your church, hospice, friends.

Q:  How do you discuss poor judgments with a parent who is no longer independent but still believes she can take care of herself?

A:  Get the MD involved in explaining to the patient what is needed.

Q:  Can you describe the speech exercises you did with Charles?

A:  Her sister developed the LSVT for PDers.  She instructed Charles to keep saying “aaaaaahhhhh” for as long and as loud as he could.  Also, she instructed Janet to give a word to Charles and then Charles had to come up with a sentence using that word.

She recommends finding LSVT-trained speech therapists for those with PSP, CBD, and MSA.  See:  They also have LOUD training.

A by John Burhoe:  The swallow tests always came out clear though, at home, Lou was always gagging and choking.

Q:  How do we make the journey as easy and dignified as possible?

A:  Keep telling your loved one how much you love them.

Use utensils to let people keep eating with dignity.  Figure out how to use the bathroom with dignity.

A by John Burhoe:  Keep doing things!  He kept taking Lou to church every week.

Q:  Do PSP patients understand what is going on around them?

A:  They may not, but we don’t know.  Treat them as if they do.

A by John Burhoe:  Hell yes.  Lou was right there, all the way through.  Treat them just as you treat everyone else.  Don’t let someone talk about your loved one in the third person (“does she want this?”).

Q:  What are the pros and cons of a feeding tube?

A:  One consideration is how much quality of life is there.  It seems appropriate if it’s very early in the disease course.

Be sure you discuss when the feeding tube should be removed or when tube feedings should be stopped.

A by John Burhoe:  There’s no right or wrong answer.  It’s a very personal decision.  It should be discussed early on so your loved one can be involved in the discussion.

They chose not to have a feeding tube because they were concerned it would extend life, and they were concerned it would be necessary to move Lou outside the home.

Q:  Can you speak about LBD?  It was my understanding that this webinar would be relevant to our situation (my wife has PDD/LBD) but you mostly spoke about PSP and CBD.

A:  The hard part is the dementia element to LBD.  Dementia gives caregiving more of an emotional component than a physical component.

We often confuse dementia with Alzheimer’s Disease.  They are different.

Behavioral things that can happen in LBD can be very disturbing to the caregiver.  Someone with LBD can accuse his/her spouse with having an affair.

Bringing humor to a the situation is so important!  (Husband with LBD:  you have other men in our bed at night!  Wife:  that’s why I got a big bed.]

Do not argue with hallucinations and delusions!

Q:  Can we get a copy of this slide presentation?

A:  Email Janet at [email protected] for a copy of these slides.

Hopefully the CurePSP website will eventually include the recordings of these webinars.

Q:  Can PT help to slow these disorders?

A:  I’m not sure it can slow these disorders.  PT can give quality of life.

A by John Burhoe:  The biggest aspect of PT for Lou was the social interaction.

Q:  Does CurePSP have more information about what my husband with MSA will experience in the coming years?

A:  We are getting more info about MSA onto our website.  The Board just approved including this disorder in its mission.


A by John Burhoe:  Don’t forget

Q:  Does anyone have puffy cheeks?  I have PSP.  Puffy cheeks caused me to bite the inside of my mouth.  It affects my speech and chewing.

A:  Don’t know anything about this.

Q:  I have PSP.  Should I try to walk and stay active, even though I fall alot?

A:  We don’t want you to fall!  If you break a bone, this will bring you down a lot.  Let someone hold onto you or use a gait belt around you.  There are techniques you can learn from a PT on how to walk.

It’s important to get a 4-wheeled walker or a very good 3-wheeled walker.  It’s a great idea to get a walker with a basket and seat.  You might consider putting weights on the walker.  You might look at

A by John Burhoe:  Put a fold-up wheelchair in the car so you can still get out!

A by Larry Schenker (webinar organizer):  You might consider a brace that comes down from the ceiling while you are on a treadmill.  Consider using a helmet.  Consider swimming.

Q:  My husband signed up for the PSP genetic/environmental risk factor study at Case Western Reserve University in Cleveland.  What other PSP studies are there?

A:  See

There’s a CoQ10 study at Lahey Clinic.

There’s a lithium study funded by NIH.

You might be able to be seen at NIH for evaluation.

There’s a drug study coming up for NAP.  It is coordinated by Dr. Adam Boxer at UCSF.

Brain donation is an important means of research.  There are over 1000 PSP and CBD brains being looked at now in a genetics study.

Q:  How did John Burhoe travel despite his wife’s incontinence?

A by John Burhoe:  On airplanes, John could lift Lou onto the plane.  They sat next to the toilet.  This was never a problem.

A:  Charles used Dignity pads along with Depends.  This is an extra pad that goes inside the Depends.

Charles used a condom catheter on airplanes.

Q:  How can I get Janet’s book “Finding Meaning with Charles”?

A:  At a bookstore, on, on, on

Q:  Is there a doctor any place in the world that we might be able to visit to get a definitive diagnosis?  My wife’s neurologist can decide between MSA, CBD, or PSP.

A:  See a movement disorder specialist, not just a neurologist.

She recommends seeing Dr. Larry Golbe.  Or:  Dr. Ravi in Boston, Dr. Diana Apetauerova at Lahey Clinic in Boston, Dr. David Riley in Cleveland.

A by John Burhoe:  He found good MDs at Mass General and Scripps.

He recommends seeing someone at a major teaching hospital such as the University of Michigan, Duke, or UCLA.


CurePSP+ Vision Statement:  cure and prevent PSP, CBD, and related disorders

CurePSP: started in 1990; 30 members initially; now, the organization communicates to over 30K people a year and receives gifts from over 8K donors

Educational Mission:
PSP, CBD, MSA, AGD (Argyrophilic Grain Disease), Pallidal Degeneration

Research Mission:
PSP, CBD, AGD, Lytico-bodig (LyB), Guadelupean Tauopathy (GT)

Outreach and education:
Guidebook and other materials
Website (videos, downloadable materials, Forum, resource)

Research:  118 research projects since 1997; values at $8.2 million
Genetics Consortium:  funded primarily by Charles D. Peebler, Jr; 13 member scientics from US, UK, and Germany
Major Programs:  Pollin Fund for CBD; Troxel Brain Bank; General Investigator-Initiated Projects

Areas of Research:
tau genetics
non-tau based pathologics
non-tau based genetic studies
anatomic and histopathologic surveys
brain bank
800/457-4777 US
866/457-4777 Canada

NPR Story on Delirium (from Hospitalization)

There’s a 5-minute NPR story today on delirium.  Apparently 2 million seniors a year (or about one-third) who go into the hospital are affected by delirium.

Here’s an enlightening excerpt:

“My father wound up getting delirious even when I was there at his bedside,” [Dr. Sharon Inouye, a geriatrician] says. “I’m an expert in delirium, and I couldn’t prevent it from happening.”

Dr. Inouye attributes it to hospital care that has become complex and fragmented:

“There were just so many physicians taking care of my father, so many medications,” Inouye says. “It was really hard for me to keep track of everything. You know, I knew there were certain medications he couldn’t tolerate, and I told one group of physicians, and then another group of physicians would prescribe it. And so it really just was quite eye-opening for me.”

If one of the world’s leading researchers on delirium couldn’t protect her own father, the average American might feel helpless, too.

Here’s the link and most of the story (the introduction isn’t available in text form).



Treating Delirium: An Often Missed Diagnosis
NPR Morning Edition
by Joseph Shapiro
August 10, 2009

Virginia Helton says her husband is a “brilliant” man. He’s a scientist who can explain complex chemistry and physics. But when he was in the hospital last February, she didn’t recognize the man acting so bizarrely — talking wild nonsense and taking off his clothes.

Earle Helton, 79, was diagnosed with delirium, a sudden and frightening onset of confusion. A common but often unrecognized problem in hospitalized elderly people, delirium is estimated to affect more than 2 million seniors a year.

“I was feeling very scared,” his wife says. “It was very disturbing to see him in all this confusion with disordered speech.”

“I remember quite vividly my desire to escape, and [I] was proposing all sorts of fantastic schemes, according to the kids, as to how I could get out and get out of the hospital,” Earle Helton says. “As a matter of fact, I ended up executing that on at least one occasion and managed to get through the hospital and underneath one of the surgical beds.”

Virginia Helton says staff at the hospital “tied his hands down because he kept trying to get out of the bed, and that made him furious. And they did that several times when he was in this state of delirium.”

Dr. Sharon Inouye was working at the Boston hospital where Helton was a patient. She recognized he was on an anti-seizure medication that could cause confusion. She stopped the medicine, but it took a few days for the drug to clear his system and the delirium to stop.

Inouye, a geriatrician at Harvard Medical School and Hebrew Senior Life, says it’s easy for doctors to miss delirium. Most of the time, a person with delirium is inattentive and may have trouble following a conversation. Sometimes, the symptoms are more obvious.

“What we look for is a person who is having a lot of difficulty answering questions,” Inouye says. “They often will not make sense. They may hallucinate. They may be very agitated. They may have a totally different personality. You know, very often family members will say to me: ‘He’s nothing like that at home.’ ”

Inouye saw delirium in her own father, who was also a physician.

“My father wound up getting delirious even when I was there at his bedside,” she says. “I’m an expert in delirium, and I couldn’t prevent it from happening.”

Inouye attributes it to hospital care that has become complex and fragmented.

“There were just so many physicians taking care of my father, so many medications,” Inouye says. “It was really hard for me to keep track of everything. You know, I knew there were certain medications he couldn’t tolerate, and I told one group of physicians, and then another group of physicians would prescribe it. And so it really just was quite eye-opening for me.”

If one of the world’s leading researchers on delirium couldn’t protect her own father, the average American might feel helpless, too.

Still, there are precautions a patient’s family can take. Family members can start by becoming more aware of the drugs that cause delirium, says geriatrician Malaz Boustani at Indiana University School of Medicine.

One class of medications that can be a big trigger is anti-cholinergic medications or common prescription and over-the-counter drugs such as some sleeping pills, asthma medications and antidepressants.

It’s also important for older patients in the hospital to keep using their eyeglasses and hearing aids and be allowed to sleep through the night, says Boustani. Delirium can be triggered by a state of confusion, and these things help maintain a more consistent environment.

Boustani recently studied 1,000 senior citizens who came to an Indianapolis hospital. One-third developed delirium. And those who spent more time in the hospital had a higher risk of going to a nursing home or of dying.

Doctors often dismiss delirium, Boustani says, because they think it’s just dementia in older people. The two are different. Delirium is a temporary form of cognitive impairment, whereas dementia is a more long-term problem that involves issues with at least two brain functions, such as memory loss along with impaired judgment or language.

Still, there’s a link between dementia and delirium.

“What we found [is] that if you develop delirium in the hospital and we follow you up to five years, the odds of developing dementia or Alzheimer’s disease is five times more,” Boustani says. “And the question is: Is it the delirium itself that caused toxic insult to the brain and then triggers spiral evolution to develop dementia? Or was the delirium simply a positive stress test for dementia?”

Boustani suspects that an episode of delirium shows dementia that already exists or is developing. But other researchers suspect that getting delirium in the hospital can cause long-term dementia.

That’s one more reason why it’s important for researchers, doctors and patients to better understand delirium that occurs in the hospital — and how to avoid it. Boustani says studying delirium appeals to him because it’s one condition in the elderly that can be reversed, not to mention something he just might encounter in the future.

“It’s a fulfilling feeling as a doctor,” Boustani says. “At the same time, I want to live as long as possible.”

He says that if he lives that good, long life, the chances are that he’ll be an elderly man in a hospital one day. “I want to be proactive and make sure the system is ready for me.”

Overview of Lewy Body Dementia (2006, AlzOnline)

The University of Florida runs the “AlzOnline” program, online caregiver support for Alzheimer’s caregivers.  From time to time, an article in their “Reading Room” catches my eye.  Tonight, I ran across their 2006 overview of Lewy Body Dementia.

Check it out:

Lewy Body Dementia
by Leilani Doty, PhD, McKnight Brain Institute, Gainesville, FL

This section is particularly good — “Family Education and Planning Ahead After the Diagnosis.”


Speech/voice exercises (by Rose Chable, SLP)

A couple of years ago these oral exercises were posted to one of the MSA-related Yahoo!Groups. These three documents were written by Rose Chable, a speech language pathologist. I suspect they were written several years ago.

Document #1
Oral Exercises
By Rose Chable, Speech Language Pathologist

Three things to keep in mind for oral exercises; strength, flexibility, and coordination.

Here are some examples.


Use a tongue depressor, popsicle stick or small spoon for resistance.

1. As you’re trying to stick out your tongue, press against your tongue with the depressor, etc. You can use this same idea in all positions for your tongue—

2. trying to stick your tongue out beyond the corners of the lips and pressing back for resistance, etc. You can use this with the lips too.

3. Pucker hard and press back for resistance. Another for the lips,

4. blow lots of air into the cheeks; don’t let air escape through the lips. If trouble loosing liquid from lips,

5. press lips together firmly (no red of the lips showing) and hold for one minute intervals. Try holding thin objects with lips only (no teeth) for longer periods of time (ie. use straw, tongue depressor, thermometer).

6. Make the loudest kissing sound you can (the louder, the stronger your lips are).

7. Say Coke, cake, cook…. each word with strong “c/k” sounds to get the tongue to go up in back (this is usually good for swallowing too).


The goal here is to get your tongue and lips to move to the FULL extent possible.


1. Stick tongue straight out way beyond the lips; hold for 3-5 seconds. If you have trouble doing this, wrap a piece of gauze or similar material around your tongue and GENTLY pull out, stretching slightly and hold. Like any muscle, don’t stretch to a point of pain. (This one’s usu. good for swallowing too).

2. Stick tongue tip into each corner of the mouth. If easy, stretch beyond the corners, as if getting peanut butter (or whatever) from the sides of your mouth.

3. Stick tongue up to top lip then down beyond bottom lip as far as possible.

4. “count your teeth with your tongue”; try to reach every tooth in your mouth with your teeth.

5. Stick tongue into each cheek and push the cheek out as far as possible with the tongue. Try to go farther back in your mouth towards back teeth. (Good for swallowing if the person has difficulty getting the food out around the teeth)

6. Lick lips all the way around, not missing any part of the lips while keeping your mouth open slightly. Try to get your tongue beyond the red border of your lips.

7. For lips, Alternate hard pucker with WIDE smile.

8. Alternate Open mouth WIDE, press lips together firmly.


The goal here is keeping consistently strong movements while speeding up the movement in a repetitive fashion.

1. Move tongue back and forth into each corner of the mouth (make sure you touch each corner). Speed up as quickly as possible. Keep your tongue moving consistently, like to the beat of drum that’s getting faster.

2. Pretend to lick a popsicle; open mouth sligtly and keep it open. Put tongue down on chin then “lick” up to top lip. Do as quickly as possible but make sure the movement is accurate.

3. Lick lips all the way around but speed up as quickly as possible with mouth open slightly. Don’t miss any part of the lips. Change directions.

4. As some have mentioned, repeat sequences of syllables (mama or Puhpuh=for lips, Lala or Tuhtuh= tongue tip up, Kaka or Kuhkuh=raising back of tongue).

Do sets of sequences quickly but accurately; all sounds must be heard. This is an example of one set to do:
“Puh Tuh Kuh, Puh Tuh Kuh, Puh Tuh Kuh”


1. Use a toothbrush’s flat side and press firmly down in the middle of your tongue then try the “c” words…cook,etc.

2. Run the toothbrush back to front on your tongue…..then stick out your tongue as far as possible.

3. Run the toothbrush down the sides of your tongue diagonally. Do one side then try to get your tongue to the corner of the lips in the direction you were rubbing.

You can also use a “Nuk brush” or oral sponges sold in pharmacies. Any of these things can be put in the freezer or add lemon to them to get even more sensation.

Pick and choose based on what you have difficulty with, then do the exercises that you’ve chosen ten times each, two times each day and see where that leads. Work on exercises that are somewhat challenging but not frustrating and try to work up to the ones that are the most difficult if you can.

Document #2
Exercises for Clearer Speech
By Rose Chable, Speech Language Pathologist

Here are some things to keep in mind for clearer speech:

When talking, concentrate on the following:
1. Open your mouth wider
2. Separate your words and syllables (Examples: Mi-am-i Flor-i-da or I’ll see you to-mor-row).
3. Pronounce EVERY sound (overexaggerate)
4. Take a deep breath prior to speaking
5. Take a breath after every 4-5 words
6. Be LOUD

Most people who have weakness/decreased coordination of the tongue, do best using #1 and 2.

If it’s mostly a voice problem (too soft), concentrate on #6 and 4.

Have someone else listen to you during a short conversation with them and have them give you feedback on if you’re really using the strategies or need to do more of them.

Or, you could tape record yourself for your own feedback.

Document #3
Lee Silverman Voice Therapy
By Rose Chable, Speech Language Pathologist

This is an overview of the Lee Silverman Voice Treatment Method:

Contact speech therapists in your area and ask if they have been trained to do LSVT. The CONSTANT reminder to the patient is to “BE LOUD” Some of the basics are:

1. Take a big breath and hold the “e” sound as long as possible on a comfortable pitch level and LOUDLY (above conversational level speech).

2. Do a scale on the “o” sound, gliding from lowest to highest pitch LOUDLY.

3. Make a list of 10 sentences that the person says on a daily or regular basis and have them repeat or read the sentences LOUDLY.

Do each of the above three times daily.

People who have Parkinson’s usually think they are yelling when they first do this so it’s important to give feedback that the loudness level is good. The practice LOUDLY is very hard to start carrying over into conversation. After doing the above exercises for two weeks, 3 times a day, then add.

4. Talk for 5-15 minutes in conversation and speak LOUDLY (the patient ot the listener).

The research was found to have the best results when the above items are done daily for at least 4-6 weeks.

It’s really best to have a speech therapist directly work with you at least on a consult basis so you will have feedback on how loud is appropriate and if other adjustments need to be made.