“Life and Death in Assisted Living” (Frontline, 7-29-13)

Long-time LBD support group member Denise alerted me to the fact that PBS’s Frontline has a program airing tonight (Monday 7-29-13) that focuses on assisted living, called “Life and Death in Assisted Living.”

The Frontline website (pbs.org/frontline) has this one-sentence
description of the program:  “As more and more elderly Americans choose to spend their later years in assisted living facilities, FRONTLINE and ProPublica examine whether this loosely regulated, multi-billion dollar industry is putting seniors at risk?”

The website suggests that this may be a two-part program, with part two airing tomorrow night.

The website has an article about part one.  (I don’t know if this is a transcript or a related news article).  See:


Life and Death in Assisted Living:  Part 1
By A.C. Thompson, ProPublica and Jonathan Jones
July 29, 2013

Part one at least focuses on a care facility called Emeritus at
Emerald Hills, in Auburn, CA.

If you are interested in reading part two, you can go to Frontline’s website tomorrow to see that.  Also, you might check out some of the comments online about part one; many are worth reading.


Are you overpaying for care?

Though this article is titled “are you overpaying for your parents’ care,” this article applies to care that spouses, siblings, etc. receive.

The author offers six suggestions to trim the care bill:

  • Hire your own home-care professionals—or become one yourself.  “There are caveats: Background checks are important, as is following state laws about working hours, disability insurance and payroll taxes…”
  • Take the tax breaks.  “If you hire paid caregivers on your own, rather than working through an agency, the parent has to report that caregiver’s income, either on a W-2 or 1099 form, to be able to deduct the expense… Home improvements made with a doctor’s prescription are tax-deductible as well…”
  • Designate a bookkeeper.  I would add that it’s important for the person with a neurological disorder to start working with the designated bookkeeper sooner than the person will need to take control over finances.  Same is true for the parent who is well to start working early on with the designated bookkeeper.  Recently a caregiver support group member complained that his daughter couldn’t remember the father’s online passwords.  I suggested that the caregiver either use a system that keeps track of passwords or designate a different bookkeeper.  (We use keepass in our family.  keepass.com)
  • Remember the veterans.  Families often don’t know about the “aid and attendance” benefit.
  • Embrace respite care.
  • Know when to consider a permanent facility.  The certified financial planner quoted for this suggestion says that in-home care is sufficient “if you need a visiting nurse three or four times a week.”  I think the CFP should’ve referred to a non-medical home care aide rather than a nurse.  Most people, even those who require round-the-clock care, don’t need a nurse; they need non-medical personal care.

Many of the suggestions are useful only to those with financial resources.  I was at a support group meeting once where a caregiver said that “neurological disease is not for poor people.”

Here’s a link to the full article:


Family Value
Are You Overpaying for Your Parents’ Care?
Overseeing home health care for loved ones can be as big a drain on families’ resources as paying for institutional care. Here are some overlooked ways to trim the bill.
Wall Street Journal
By Kelly Greene
July 19, 2013

Beneath the article is a chart from Genworth Financial about what long-term-care costs.




Do’s/Don’ts for Effective Communication, and Dartmouth Memory Handbook

This post offers ten do’s and ten don’ts for effective communication for all caregivers.

Local LBD support group member Dorothy Adams sent me info about the “Dartmouth Memory Handbook” recently.  She said:

I have not read the complete book, but I am so impressed with every section.  I especially liked Section 4:  “Taking Care of People with Memory Disorders” gives a list of do’s and don’ts for effective communication is very specific to guide/help us in learning how to speak kindly and communicate with a person suffering with dementia.  How we say something, our voice tone, inflection, patience, impatience, comes through to the loved one.  I learned some of this in a class, but it is the first time I have been able to review it!

The handbook, edited by Dr. Robert Santulli of Dartmouth-Hitchcock Medical Center, was published in 2011.  Much of the content was written in 2010.  You can read the handbook at no charge online, download it and print it yourself, or order a copy that will be sent at no charge.

Here’s a link to the online version:


This 341-page handbook contains 13 sections.  Like Dorothy, I recommend Section 4, Taking Care of People with Memory Disorders.  As with the other sections, section 4 contains a few items written by Dr. Santulli and lots of items reprinted from other publications, mostly those that focus on Alzheimer’s Disease.

One of the more useful items is Dr. Santulli’s “Do’s and Don’ts for Effective Communication.”  The ten-item list of do’s and ten-item list of don’ts are copied below.  (It’s section 4.1 of the handbook.)

I do NOT recommend Section 3.4, Lewy Body Dementia/ Dementia with Lewy Bodies (DLB).  This section is a reprinted fact sheet from the “Lewy Body Dementia Directory” (zarcrom.com).  There are better, more accurate fact sheets available from other sources, such as the LBDA (lbda.org).

If anyone else finds other worthwhile nuggets, let me know!



4.1 Do’s and Don’ts for Effective Communication

From Dartmouth Memory Handbook
Robert B. Santulli, M.D
Revised September, 2010

Below are suggestions for attitudes to have and techniques to use when interacting with someone with Alzheimer’s disease or other dementia. There are also a set of suggestions for interactions to avoid.

1.  Do have “Unconditional Positive Regard”
No matter how difficult the behaviors of the person with dementia can be, respond with patience, without anger, and with affection.

2.  Do make all communications short, simple and clear
Give only one direction; one question; one idea at a time.

3.  Do tell the person who you are if there appears to be doubt

4.  Do call the person by name

5.  Do speak slowly
The person with dementia may take longer to accurately process and understand what is being said.

6.  Do use closed-ended questions which can be answered “Yes” or “No”
For example, ask:  “Did you enjoy the roast beef at dinner?” rather than:  “What did you have for dinner?”

7.  Do find a different way to say the same thing if it wasn’t understood the first time(s)
Usually, a simpler, more concrete statement, with fewer words will be better understood.

8.  Do use distraction, partial truths, or even “fiblets” when necessary, if telling the whole truth will upset the person with dementia
For example, in answer to the question, “Where is my mother?” it sometimes might be better to say:  “She’s not here right now” rather than “She died twenty years ago”.

9.  Do use repetition as much as necessary
Be prepared to say the same things over and over because the person with dementia can’t recall them for more than a few moments at a time

10. Do use techniques to attract and maintain the person’s attention
Smile; make eye contact; use gestures and touch


1.  Don’t ever say:
“Do you remember?”
“Try to remember!”  
“Did you forget?”  
“How could you not know that??

2.  Don’t ask questions that directly challenge short term memory.
Don’t say, “Do you remember what we did last night” because the answer will likely be “no”, and this may be humiliating for the person with dementia

3.  Don’t talk in paragraphs.
Persons with dementia may be unable to follow a complex set of ideas presented. Offer one idea at a time. One noun and one verb in one sentence is enough for the person with Alzheimer’s disease

4.  Don’t say anything that points out the person’s memory difficulty
Avoid remarks like: “I just told you that” or “We already talked about that” — just repeat it again (and again)

5.  Don’t talk in front of the person as if he or she were not present
Always include the person with dementia in any conversation when they are physically present.

6.  Don’t use lots of pronouns
Avoid “there, that, those, they, him, her, it; use nouns instead. For example, “why don’t you sit in the blue chair” rather than
“why don’t you sit there”

7. Don’t use slang, unfamiliar words, or jargon
The latest expressions in common parlance may not be understood by the person with dementia.

8.  Don’t use patronizing language or “baby talk”
Even very demented persons are sensitive to being “talked down” to or patronized, and will feel offended, angry or hurt.

9.  Don’t use sarcasm, irony; be cautious with humor
This kind of humor may be well-intended but can easily backfire and cause hurt or confusion.

10. Don’t be impatient.
If you ask a question, wait for a response. Give the person time to process the question and think about their answer

Poems by LBD Caregiver Wife

This week I saw some poems posted to the Link2Care list which were written by an LBD caregiver spouse who lives in San Luis Obispo.  Many of these poems will likely resonate with the spouses in our group but even we adult children can find parts that resonate with us.

The poet is Carol Pappas.  When I requested permission to share the poems, she replied:  “Yes, most certainly share the poems as my hope is they will be an encouragement to other caregivers on this same journey.  May it help with our sanity and longevity.”

Below, I’ve copied a few of her poems from July 17th and June 19th.



Poems by Carol Pappas
July 17, 2013 (first 3) and June 19, 2013 (last one)


It was 2002 when I learned
how to spell mastectomy.
A few years later
it was caregiver and
non-Hodgkin’s lymphoma.
Next came pacemaker,
dementia, and Lewy Body.
Finally in 2013 I learned
how to spell chauffeur
and also walk a slow gait.


Conversation with a dementia man
Needs psychic to know the subject,
Requires agreement of all,
No discussion allowed.

Conversation with a dementia man
Resembles a cat on a hot tin roof.


He calls me Hitler
and sometimes
but never lovely
or beautiful.
My spirit longs
for meaningful
and love.
In another
season and time
with hope
will come
new life
and joy.


i live with a dementia man
i am not by myself
yet so alone.

he is there with me
yet somewhere else.

we walk side by side
yet each alone.

each marching to the music
of a different tune.

our beat goes on
mine fast, his slow.

we are a world apart
in the drama of each day
each so alone.

Subjective Cognitive Decline (research)

There was an interesting article this week in the New York Times about worldwide research into “subjective cognitive decline” – where an individual believes he/she is suffering from cognitive decline but there is no objective evidence of this.

The article reported that Brigham and Women’s Hospital researchers “found that people with more concerns about memory and organizing ability were more likely to have increased levels of amyloid, a key Alzheimer’s-related protein, in their brains.”  

At Mayo Rochester, something similar was seen:  “those who had a concern about their memory in fact had more likelihood of later developing mild cognitive impairment, an early phase of dementia.”

A German researcher, convinced of the existence of “subjective cognitive decline” for years, said that:

“[In] diseases from arthritis to Parkinson’s, people often feel something is wrong before others notice. In most phases of dementia, family members and friends see deficits, but the disease has usually stolen the person’s ability to recognize them. But at the subjective phase, studies suggest family members may miss problems; the person may feel his mind working harder, but he still functions well.”

 The New York Times article says:  “Experts also are not yet suggesting doctors regularly screen people for ‘subjective cognitive decline’ because much more research is needed and no effective dementia treatment now exists.”

Here’s a link to the article:


Looking for Early Signs of Dementia? Ask the Patient
New York Times
By Pam Belluck
Published: July 17, 2013


Decline in Dementia in Europe

There was an interesting New York Times article this week about the lower rate of dementia in two recent European studies.

I hadn’t planned on sharing the article as it is more about Alzheimer’s than any of the non-AD dementias in our group, but the PBS NewsHour had a very nice interview tonight (July 17, 2013) on this news.  The PBS NewsHour interviewed Dr. Murali Doraiswamy, an Alzheimer’s researcher at Duke University, who was mentioned in the rate of dementia article below.

The PBS NewsHour segment is only seven minutes.  You can find a link to the segment plus a transcript here:


(When I was watching the NewsHour live, the lead-in video showed Dr. Adam Boxer at UCSF.  But today’s segment was not about UCSF research.)

On the NewsHour, Dr. Doraiswamy noted that:

“We have to differentiate is the risk vs. the total numbers.  The total numbers of Alzheimer’s disease are going to climb upwards quite dramatically because older age and the rising number of people who live into their 70s, and 80s and 90s is a huge risk factor for Alzheimer’s.  But within each generation, what we’re seeing is a given person’s risk for developing Alzheimer’s might actually reduce and go down.”

Plus, Dr. Doraiswamy surmised that the decline in dementia was probably due to decline in vascular dementia “because we now have better ways to treat cardiovascular disease.”

Here’s a link to the New York Times article on these research findings:


Dementia Rate Is Found to Drop Sharply, as Forecast
By Gina Kolata
New York Times
Published: July 16, 2013





“6 Mind Hacks That Keep Stress In Check”

I’ve been taking a mindfulness-based stress reduction class at Palo Alto Medical Clinic, so the topic of using your mind to change your perception is of interest to me these days.  I thought this was a good, short article on six things you can do to keep “stress in check.”

The six stress management techniques include:

  • Be mindful of how you label things.
  • Erase and replace.
  • Use your imagination.
  • Look at your life as a movie.
  • Revisit what’s valuable.
  • Stop by a graveyard.

I especially liked “Look at your life as a movie.”  Here’s what the author has to say about this technique:

Look at your life as a movie.
You’re the director — you get to decide which events become catastrophe, and which don’t make the cut. This is a practice that involves stepping away. “Be the watcher rather than the reactor,” [Lauren E. Miller, author and stress expert] instructs. Look at a stressful moment as if it’s on screen — imagine the scene that initially caused you to feel stressed, and imagine your reaction to it. There’s a lot you can do with this power. You can add props (have the people who are making you feel threatened wear clown costumes, for example). You can make the aggressive characters in your life physically smaller, and decide that your voice is louder than all of the supporting actors of your life’s movie. Looking at a problem from this angle will remind you that you’re in control.

Here’s a link to the full article:


6 Mind Hacks That Keep Stress In Check (Really!)
The Huffington Post
By Kate Bratskeir
Posted: 07/16/2013 8:18 am EDT




“When Aggression Follows Dementia” (NYT 7-12-13)

This post may be of interest to those dealing with dementia — all of the LBD caregivers, the majority of PSP caregivers, and some unknown percentage of CBD caregivers.  (Presumably no MSA caregiver is dealing with dementia.)

This article from Friday’s (July 12, 2013) “New Old Age” blog in the New York Times points out that a “sizable minority” of those with dementia — nearly 29 percent, according to a German study — have physically aggressive behavior.

Approaches mentioned in the article include:

  • placement in a suitable care facility
  • treatment of pain, infection, and depression
  • using “behavioral approaches to soothe aggressive responses,” such as letting the person with dementia have his/her way (and not arguing over tasks)
  • reduce stimulation in the environment
  • “adapt the way you communicate”
  • medication (the need for which should be re-assessed every so often)

Here’s a link to the article:


The New Old Age: Caring and Coping 
New York Times
When Aggression Follows Dementia
By Paula Span
July 12, 2013, 4:38 pm


PSP on “The Doctors” (3 minutes), CBD and MSA mentioned (7-11-13)

This email will mostly be of interest to the PSP folks, and maybe of passing interest to the CBD and MSA folks.

Local support group member Phil Myers sent me this info today.

Patricia Richardson, the actress who was on a show called “Home Improvement,” is the national spokesperson for CurePSP.  She was on “The Doctors” today (July 11, 2013).  “The Doctors” had segments today with actresses who played mothers on TV shows.

She talked about PSP, which is a disease her father had.  She mentioned CBD and MSA.  She said that the only person with PSP that we’ve heard of is Dudley Moore, and she said that Johnny Cash had MSA.  (I thought that the MSA community did NOT think Johnny Cash had MSA.)

When describing PSP, she said that it was a tauopathy, like traumatic brain injury that returning vets get and like football players.  I’m not aware that TBI injuries in war zones are connected with the protein tau.  Certainly, chronic traumatic encephalopathy (CTE) is a tauopathy that many athletes have been found to have on post-mortem brain examination.  CTE is caused in some way by repeated head trauma.

There was a graphic that came up when she talked that said 5 out of 100,000 people have PSP.  Ms. Richardson made the point that only one in three are diagnosed with PSPPSP is as common as ALS or Lou Gehrig’s Disease but people have heard of ALS.

Here’s a link to “The Doctors” webpage on today’s segment about health secrets from TV moms:


On that webpage, scroll down to find a summary of info on PSP and a link to three short clips — 90-second PSP overview, 90-second comparison of PSP and Parkinson’s, and 50-second caregiver advice from Patricia Richardson.

I’ve copied the info from “The Doctors” website on PSP below.  (The details on the “synopsis” page were not all discussed in the segment with Patricia Richardson.)




Patricia Richardson on PSP Awareness
As the Home Improvement mom America could relate to, actress Patricia Richardson went from the TV limelight to being a national spokesperson for Cure PSP — an organization combating a rare and often misdiagnosed brain disease that claimed the life of her father and fuels her fight to find a cure.

“He probably had the disease [for] five or six years before we knew he did,” Patricia says. “We’re only really catching 1 in probably 3 people with it.”

PSP, or progressive supranuclear palsy, is a degenerative neurological disorder that causes abnormal movement, similar to that of Parkinson’s disease. People suffering from PSP develop sluggish body movement and stiffness, as well as balance problems and difficulty with eye and neck motility. PSP is caused by an inability to process natural waste from the cells in the brain. Most people can process this waste but for those with PSP, the waste remains in the brain and creates a protein that attacks the brain cells. Oftentimes, people are misdiagnosed with Parkinson’s and prescribed medication. If the medication proves ineffective, it signals that PSP may be the cause, as opposed to other brain diseases.

Approximately 5 people in every 100,000 will develop PSP, but only a third are diagnosed. Unfortunately, an official diagnosis usually occurs after death, when doctors can examine the brain during an autopsy to verify if the proteins that cause PSP are present. The best living diagnosis is if patients are not reacting well to their Parkinson’s medication. PSP usually develops in people in their 50s and 60s — not in the later years. The disease tends to last between five and 10 years, before patients die from related health complications, such as aspirational pneumonia and brain ulcers. Researchers speculate that there may be a genetic component to PSP, but the specific gene has yet to be identified.

(Note:  there’s a short ad before these video clips)

PSP Symptoms:
This video is just over 3 minutes.  Caregiving and PSP are first raised about 1:33.  CBD and MSA are mentioned shortly thereafter.

PSP Explained:
This clip is about a minute and a half.  It features Dr. Carlos Portera-Cailliau.  PSP is compared to Parkinson’s Disease.

Patricia Richardson’s Advice for Caregivers
This clip is about 50 seconds long.  Patricia Richardson advises people to get into a patient advocacy group.  Caregivers are told to take care of themselves.  

Short Description of LBD (Northwestern Univ)

Quite awhile ago, Dr. Brad Boeve, an expert in LBD, PSP, and CBD from Mayo Rochester, recommended Northwestern University’s website on primary progressive aphasia (PPA).  I was looking at the site for someone today.

Northwestern’s website has a very short webpage on LBD (Lewy Body Dementia) as well.  Looks like it hasn’t been updated in over a year.

I’m copying the webpage on LBD below because I think there can be value in short webpages that can easily be shared with friends, family, care facilities, and aides.




Lewy Body Dementia (LBD)


Lewy Body Dementia (LBD) is a disease that is related to Parkinson Disease, but has significant involvement of memory and thinking as well.


Like Parkinson Disease, people with LBD get slowed movements, stooped unsteady shuffling gait, loss of facial expression, and tendency to fall. Additionally, people with LBD also develop significant changes to memory and thinking. Commonly, they will have major fluctuations in their attention and awareness, which can last for significant periods of the day, or can be momentary. This may manifest as staring spells, spending most of the day sitting or sleeping, or difficulty following events. Oftentimes, the types of thinking changes will look like psychiatric disease like major depression, odd false beliefs (delusions) or seeing things that are not there (visual hallucinations).


Over time, both the movement and cognitive symptoms get worse. These symptoms tend to develop slowly, but somewhat quicker than in dementia of the Alzheimer type. Rarely, the symptoms may develop extremely rapidly.

Late in the course, people may develop problems with injuries from falls, immobility, or swallowing problems.

Diagnosis and Treatment

How it’s diagnosed
LBD is diagnosed based on the signs and symptoms above by a qualified doctor. Oftentimes, an MRI and basic bloodwork is done to make sure that there are no other explanations for the symptoms.

The movement problems in LBD can be treated with Parkinson Disease medication, such as carbidopa-levodopa. Depression and motivation problems may respond to antidepressants. Antipsychotic medications such as quetiapine can help behavior, psychiatric problems such as delusions and hallucinations, and with agitation, but can also worsen movements, so need to be used with caution. Alzheimer’s medications such as donepezil seem to help with the fluctuations in many with LBD.

Non-pharmacological interventions

Supportive treatment for problems with behavior, swallowing, speech and communication, falls and mobility are available. Many people with LBD benefit immensely from occupational therapy, physical therapy, and speech therapy.

This page last updated Jun 19, 2012