“Form of Dementia, Often Misdiagnosed” (NYT, 9-25-12)

This is a nice, short article on LBD in last Tuesday’s New York Times.  Dr. James Galvin, an LBD expert at NYU, argues that a diagnosis of LBD is useful for several reasons:

  • “[A] variety of drugs — certain antipsychotics and stimulants, and some Parkinson’s and Alzheimer’s medications — can make life easier for patients and their families, at least for a while.”
  • “[Those] with Lewy body dementia can react very badly to certain antipsychotics and to some antinausea treatments.”
  • “If you give someone a wrong diagnosis, the family has no ability to plan.”

It’s slightly ironic that Dr. Galvin notes that he doesn’t fault physicians for not making an LBD diagnosis because it’s “not that easy.”  I’ve mentioned many times that fewer than half of the brain donation cases I’ve done with supposed LBD come back with LBD as the confirmed diagnosis.  One of the misdiagnosed cases was a case of an LBD expert’s; the person didn’t have a single Lewy body in the brain but had Alzheimer’s Disease upon brain donation.  This is a hard diagnosis for even LBD experts to get right!

By the way, the article talks about Paul Smith, and that he started an LBD caregiver support group this summer.  (Paul lives in IL.)  Paul says of the people who attend the group meetings:  “They wanted information, but they also sought the relief of being with people who understand.”  

I hope everyone can attend our LBD caregiver support group meetings in San Mateo, or perhaps a Parkinson’s caregiver support group meeting, or perhaps an Alzheimer’s caregiver support group meeting!

Here’s a link to the article:


The New Old Age: Caring and Coping
A Form of Dementia That Is Often Misdiagnosed
The New York Times
By Paula Span
September 25, 2012, 12:58 pm


Signing arbitration agreement with nursing home

If you are considering placing a loved one in a nursing home or skilled nursing facility, you might take a look at this article from this week’s Washington Post.  Otherwise, skip it!

According to this article, nursing homes may ask you to sign an “arbitration agreement” along with admission papers.  The advice from this article is:  don’t sign the agreement.  It’s not a condition of admission.  “The American Health Care Association doesn’t support requiring people to sign an arbitration agreement as a condition of admission…although practices may vary at individual nursing homes.”

Here’s a link to the full article:


Signing a mandatory arbitration agreement with a nursing home can be troublesome
By Michelle Andrews
Washington Post
Published: September 17, 2012



“The Most Important Conversation You’ll Ever Have”

Many of you have heard of Ellen Goodman’s “Conversation Project,” which is an attempt to get families to share their wishes about the end of life. This is a good article in O Magazine (oprah.com) with a question and answer with Ms. Goodman.


The Most Important Conversation You’ll Ever Have
No one wants to bring up dying, but talking with your loved ones about the final stage—theirs and your own—is essential.
O Magazine
September 17, 2012