“Lewy Body Dementia: The Under-Recognized but Common Foe”

The Dana Foundation has just published a new online article on Lewy Body Dementia. The website’s editor says:

After Alzheimer’s disease, Lewy body dementia (LBD) is the most prevalent progressive dementia of the many cognitive disorders wreaking unspeakable havoc on millions of lives. LBD is characterized by the presence of Lewy bodies, which are abnormal aggregates of a protein called alpha-synuclein, and are found  in regions of the brain that regulate behavior, memory, movement, and personality. Many of the symptoms of Alzheimer’s, Parkinson’s, and LBD overlap, but LBD is more difficult to diagnose. Underdiagnosis is just part of the reason why LBD is unknown to the public and many health-care providers, and why funding for research lags far behind that for almost every other cognitive disorder.

While it’s a good article, I think it would be challenging reading for those who are new to LBD.  Probably most of our group members won’t have a problem with it!

The article makes a few points:

  • The underdiagnosis of LBD may delay appropriate symptomatic treatments and expose patients to dangerous medications.  It also leads to a lack of LBD research.
  • An early diagnosis of LBD helps families prepare.
  • Though the majority of both LBD caregivers and Alzheimer’s caregivers mention “memory impairment” as the most common presenting symptom, the nature of the memory impairment is different“Alzheimer’s affects the ability to encode new experiences into one’s long-term memory, whereas the disorder in LBD can be one that affects retrieval of memory.”
  • “If medications are employed for LBD patients, a complex and delicate degree of balance is required. Drugs that are commonly used to treat the rigidity and immobility of Parkinson’s cannot be used as liberally in dementia with Lewy bodies, since they tend to worsen hallucinations.”

These facts were new to me, and I’ll have to ask around about them:

  • “[The] amount of overall pathology associated with alpha-synuclein occurs at lower levels than amyloid and tau proteins in Alzheimer’s, which makes it harder to develop lab tests that measure it.”
  • “[There] are fewer genetic causes of LBD that can be used to create experimental models than there are of Alzheimer’s.”
  • “It wasn’t until the development of a staining technique in the late 1990s that researchers learned how much more common LBD is than previously thought.”

There are two things that I take issue with in the article.  First and most importantly, with just about all publications about Lewy Body Dementia, there is a co-mingling of two disorders — Dementia with Lewy Bodies, and Parkinson’s Disease Dementia.  These disorders actually have separate diagnostic criteria though you wouldn’t know that from this article or from the Lewy Body Dementia Association website.

Second, RBD (REM sleep behavior disorder) seems to have slipped into being identified as a “core feature” of LBD rather than a “suggestive feature.”  (The diagnostic criteria for DLB lists RBD as a “suggestive feature.”)

Here’s a link to the article:


Lewy Body Dementia: The Under-Recognized but Common Foe
By Meera Balasubramaniam and James E. Galvin
From:  Dana.org
October 02, 2013

If you pick up on items of interest to you, please share! News about this article was recently posted to an LBD-related online support group.


Discharge Planning (checklist, etc)

I attended a talk last Wednesday at Avenidas Senior Center in Palo Alto on “Navigating the Hospital Stay: A Caregiver’s Role.”  I picked up two pieces of info that were worthwhile.

First, Medicare offers a discharge planning checklist.  See:


If you are advocating for someone else in the hospital, going through this checklist is an important part of your caregiver role.  If you are in the hospital, it’s always a good idea to have a family member or a friend there advocating for you, taking notes, and completing this checklist on your behalf.

Second, if you are at the hospital and are not understanding the discharge plan, having trouble getting your point across, having difficulty advocating for yourself or your family member, or needing a mediator, you can call “Guest Services,” request the assistance of the social worker, or request assistance of the hospital religious staff, such as the chaplain.  (The group at Stanford Hospital that deals with complaints and patient issues is called “Guest Services.”  It might be called something else at other hospitals.)  You can even request these things in the ER.  Most ERs have on-call social workers, for example.



Advice About Assisted Living for Aging Relatives, Part 2

The last three Wednesdays, the New York Times has had a three-part series of questions-and-answers on assisted living and other living arrangements for seniors.  This post is about part two of that series.  I thought part two had more useful advice than part one.  One key piece of advice – plan ahead as much as possible!

This analogy was provided in part two by the author:

I once heard a prominent geriatrician explain that dementia is like the rain — rain may be in the forecast, but it is unlikely that the storm will hit exactly when it is expected. Therefore, just as you would want to pack an umbrella in your pocketbook “just in case,” it is important that safety measures have been put in place before the “storm” begins.

I wonder if it’s possible for families to discuss in detail what measures they’d want taken if a family member developed dementia…?

The entire Q&A is worth checking out, especially the section on “Knowing when it’s time for more help”:


Ask an Expert
Advice About Assisted Living for Aging Relatives, Part 2
By The New York Times
Published: October 23, 2013



End-of-Life Planning Mistakes to Avoid (from financial planner’s view)

This is a good end-of-life planning article — written from a financial planner’s point of view.

Two key points are made in the article:

First, by not completing estate planning documents, IRA beneficiary designation forms, and funeral planning, people are potentially creating family strife.

Second, it’s important to talk with family members about these plans, even if we are part of the “silent generation” who avoids these topics.  One of the financial planners quoted in the article believes there should be a “Death Planning Day,” where we are all forced to address these important topics with our families and executors.

Here’s a link to the article:


Financial Planning Magazine
End-of-Life Planning Mistakes to Avoid