New NIH Booklet on Lewy Body Dementia

Someone at the Alzheimer’s Disease Education & Referral Center at the NIA (National Institute on Aging – part of NIH) sent me a couple of copies of this new NIA booklet on Lewy Body Dementia, published in September 2013.  I will bring the two copies I have to the next caregiver support group meeting, and lend them out.

You can order a print copy yourself here:  (free of charge)

Alternatively, you can print your own copy from this PDF or read it online here:

I think the booklet’s review of symptoms and how to manage/treat these symptoms is good.

Three points made in the booklet were wrong, as far as I’m concerned:

1.  “LBD can occur alone or along with Alzheimer’s or Parkinson’s disease.”

Robin’s comment:  Yes, LBD frequently co-occurs with Alzheimer’s Disease.  But it never co-occurs with Parkinson’s Disease.  You can make a good argument that Parkinson’s Disease Dementia — one type of LBD — *is* Parkinson’s Disease.  And many neurologists make the argument that Dementia with Lewy Bodies — another type of LBD — *is* Parkinson’s Disease.  I have never heard *any* LBD expert say that LBD co-occurs with Parkinson’s.

2.  “It’s important to know which type of LBD a person has, both to tailor treatment to particular symptoms and to understand how the disease will likely progress.”

Robin’s comment:  There are two types of LBD — DLB and PDD.  Treatment is tailored to symptoms present, not which type of LBD a person has.  Also, I’m not sure how knowing the type of LBD will help one understand how the disease will progress.  Survival time is shorter in DLB than PDD but the progression is quite individual.

3.  “(LBD) represents an important link between (Alzheimer’s and Parkinson’s).”

Robin’s comment:  The link between LBD and Alzheimer’s is unclear to me.  Yes, LBD frequently co-occurs with AD but the two disorders have little in common.

There were a few other items that could’ve used further clarification:

4.  “Many LBD experts prefer quetiapine or clozapine to control different behavioral symptoms.”

Robin’s comment:  This is certainly true.  But, in some with LBD, even these preferred medications can cause neuroleptic malignant syndrome.

5.  “Urinary incontinence should be treated cautiously…”

Robin’s comment:  This is certainly true.  I wish more had been said about treatment of this symptom as it’s a very common symptom.

6.  Like nearly all other publications I’ve seen for lay people, this booklet conflates DLB and PDD.  They actually have different diagnostic criteria but you wouldn’t know it from this publication.

If you find worthwhile items in the booklet, please let me know!


“Medicare rules create a booming business in hospice care for people who aren’t dying”

There’s a good article in yesterday’s Washington Post about the financial incentives for for-profit hospice agencies.

Here are key excerpts:

  • “In 2011, nearly 60 percent of Medicare’s hospice expenditure of $13.8 billion went toward patients who stay on hospice care longer than six months, MedPAC, the Medicare watchdog group created by Congress, has reported.”
  • “But much of the data suggests that the trend toward longer stays is a response to the financial incentive.:
  • “Consider the difference between the nonprofit and for-profit hospices: While the average nonprofit serves a patient for 69 days, the average for-profit hospice serves a patient for an average of 102 days, according to MedPAC.”

Here’s a link to the article:

Medicare rules create a booming business in hospice care for people who aren’t dying
The Washington Post
By Peter Whoriskey and Dan Keating
December 26, 2013



Gadgets for older adults (GeriPal blog, 12/14/13)

Today I learned about the GeriPal, a “geriatrics and palliative care blog.”  It’s the creation of two UCSF geriatricians.

In a recent blog post by a UCSF research fellow (12/14/13), a list of gift ideas for older adults was offered.  There are a lot of worthwhile ideas here – not just for holiday gifts but for any-time purchases.  Ideas include:

Jar openers
Scooped bowl
Handy bar
Arrange for services
Cool canes
Pill boxes
Traction socks
Gift cards for transportation services
Chair exercise videos
Brain games
Bright lighting
Magnifying glass
Visit and do household chore
Personal sound amplifier
TV amplifier
Induction burner for stove
Medication-reminder clock
Inflatable lift
Calendar of family photos

You have to check out the blog for all the links and comments about these wonderful ideas:

What to give Uncle Ernie, Grandma Mabel and Great Aunt Rose?
By Anna Chodos


Iron Chef is Battling MSA (Las Vegas Sun, 12/12/13)

Last week, a news story was published in the Las Vegas Sun newspaper about the “Iron Chef” winner having MSA.  The author is journalist Robin Leach, a friend of the chef’s.

The 58-year-old chef, Kerry Simon, owns many restaurants around the US, and lives in Las Vegas.  It seems he was diagnosed at the Cleveland Clinic Lou Ruvo Center for Brain Health in Las Vegas, perhaps three years ago.  Mr. Simon has had symptoms for five years, including slow movements, fatigue, pain, and poor balance.  He’s now in a wheelchair fulltime.

This article describes MSA as an “aggressive form of Parkinson’s.”  He’s gone public with his diagnosis in order to “inspire others to have courage and faith that there will one day be a cure.”

The article notes that Mr. Simon is going to undergo “stem cell” treatment but no details are given.  Mr. Simon has his own website but there’s nothing about MSA there.  ….yet?

Here’s a link to the Las Vegas Sun article:  (posted today to one of the MSA-related online support groups)

Chef Kerry Simon is battling aggressive form of Parkinsons: ‘The long-term diagnosis is not good’
Las Vegas Sun
By Robin Leach
Thursday, Dec. 12, 2013 | 2 a.m.


“Easing the Added Stress of Caregiving During the Holidays”

I was looking for articles on caregiver stress around the holidays, and stumbled across this one.  It’s on a website,, with information about therapy, depression, etc.

Here’s an excerpt:

Stress occurs when we work too much, sleep too little, try to cope with difficult or troubling situations, and when we neglect to take good care of ourselves — all of which are typically everyday state of conditions for the millions of Americans who find themselves in the role of caregiver to an older frail, ill, or disabled relative. The added physical and emotional demands that are involved in celebrating the holidays can add to an already heavy load of caregiving responsibilities and cause feelings of stress to soar.

The article offers a long list of suggestions for family caregivers to help ease holiday stress, including:

  • Set manageable expectations and limits for yourself. Be realistic about what you can and cannot do — as well as what you want to do and don’t want to do.
  • Ask for and accept help!
  • Maintain or establish social interaction with friends and other family members. Isolation can further increase feelings of stress. Having the chance to have fun, laugh, and focus on something other than your at-home caregiving responsibilities can help you keep stress at bay and maintain emotional balance.
  • Seek emotional and moral support from other caregivers — there is great strength in knowing you are not alone.
  • Use community resources such as meal or shopping services, home-care aides, adult day services, and/or volunteer help from faith-based organizations or civic groups.
  • Try to find time for yourself to do something you especially enjoy such as reading, walking, listening to music, gardening and/or visiting with a friend.
  • Find ways to ensure you get enough rest.

Here’s a link to the article:

Easing the Added Stress of Caregiving During the Holidays