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

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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:

newoldage.blogs.nytimes.com/2012/09/25/a-form-of-dementia-that-is-often-misdiagnosed/

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

Robin

Signing arbitration agreement with nursing home

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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:

www.washingtonpost.com/national/health-science/signing-a-mandatory-arbitration-agreement-with-a-nursing-home-can-be-troublesome/2012/09/16/ccf851ba-6a2c-11e1-acc6-32fefc7ccd67_story.html

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

Robin

 

“The Most Important Conversation You’ll Ever Have”

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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.

www.oprah.com/relationships/how-to-talk-about-dying-ellen-goodman-the-conversation-project

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

(End-of-life) Conversation Starter Kit (NYT, 8/17/12)

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This post in today’s “The New Old Age” blog in the New York Times is about how to start the conversation with a loved one about advance care directives and end-of-life wishes.  One terrific conversation starter we’ve used in our family are the “Go Wish” cards.  (I got a couple of sets two years ago for $5 each from coalitionccc.org.)  At our recent PD/parkinsonism caregiver event in Foster City, Dr. Matt Arnold recommended the “Go Wish” cards as well.

Dr. Arnold also recommended the “Five Wishes” document, which we’ve talked about at local support group meetings for seven or eight years, after local support group member Storme first brought it to a meeting.  (See fivewishes.org.)

Though these resources have been around for awhile, as the blog post notes below, fewer than 40% of us seem to have advance care directives or living wills.

Now comes “The Conversation Project” — theconversationproject.org. You can view online their 10-page “Conversation Starter Kit” here:

theconversationproject.org/wp-content/themes/conversation-project/images/TCP_StarterKit.pdf

If any of you end up using this kit, please let me know your thoughts on its value!

Here’s a link to the blog post:

newoldage.blogs.nytimes.com/2012/08/17/how-do-you-want-it-to-end

The New Old Age: Caring and Coping
How Do You Want It to End?
By Paula Span
New York Times
August 17, 2012, 3:45 PM

Is “death rattle” horrible for dying person?

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This is mostly a question for Bill, our resident hospice RN, but anyone is welcome to comment!

There’s an article in last weekend’s LA Times* about a woman whose husband was on hospice. She was very upset and he was very upset that his death didn’t come more quickly. When he did begin to actively die, he had a “death rattle.” She described the death rattle as “horrible.” And she described her husband’s death as “barbaric” — perhaps both because of the death rattle and because he didn’t die as quickly as he wanted. (I’m not sure.)

I remember when my father was nearing death, I was very worried about the “fish out of water” breathing that sometimes occurs with people. Seems like I was reassured at the time that this sort of breathing is far more disturbing to the bystanders than to the person experiencing it.

Bill – do we have any information as to whether the “death rattle” is “horrible” for the dying person? Does the “death rattle” indicate a person is suffering? Can Roxanol (liquid morphine) be given at the time? Does that resolve the “rattle”? What can bystanders do when they hear the “death rattle”?

Robin

* http://www.latimes.com/news/local/la-me … 125.column