Monthly Archives: November 2015

Good overview of LBD in Wednesday’s Washington Post

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There’s a good overview of Lewy Body Dementia in today’s Washington Post.

https://www.washingtonpost.com/news/morning-mix/wp/2015/11/04/lewy-body-dementia-the-devastating-disease-that-robin-williamss-widow-blames-for-his-death

Morning Mix
Lewy body dementia, the devastating disease that Robin Williams’s widow blames for his death
By Sarah Kaplan
November 4, 2015 at 3:10 AM
Washington Post

Robin

Robin Williams had Lewy Body Dementia

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I received lots of texts and emails today on the latest in the Robin Williams – Lewy Body Dementia story.

His widow was interviewed today and indicates that LBD, not depression, killed her husband.

Here’s an excerpt from a Washington Post article about the interview news anchor Amy Robach did this morning with Susan Schneider Williams:

Robach explained that Robin Williams’s autopsy revealed he was suffering from Lewy body dementia, a debilitating brain disorder. “Most people think your husband killed himself because he was depressed,” Robach said. “No, Lewy body dementia killed Robin,” Susan Williams said. “It’s what took his life. And that’s what I’ve spent the last year trying to get to the bottom of: what took my husband’s life.” The week of his death, Williams, 63, was scheduled to go to a facility for neurocognitive testing. But the dementia, combined with the Parkinson’s diagnosis, was causing him serious, unmanageable pain.

 
And here’s an excerpt from a New York Times article:

In the early stages, many people with the disease are aware of all these changes — and of their prognosis. The decline is steady, steeper than the average 10 percent drop a year in tests of cognitive function seen in Alzheimer’s; and there is no cure. Mr. Williams may have been both aware, and strong enough to act to avoid his fate. “If you’re young, if you have insight into what’s happening, and you have some of the associated symptoms–like depression, and the hallucinations,” said Dr. Edward Huey, an assistant professor of psychiatry and neurology at Columbia. “That’s when we think the risk of suicide is highest.”

 
Robin Williams had not been diagnosed with LBD while alive.  It was only diagnosed after a brain autopsy was performed.

I’ll copy below the links to the two newspaper articles referred to above.

Robin

Finding a recommended hospice agency

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FINDING A RECOMMENDED AGENCY

Within our local Brain Support Network, I am often asked how to find a good hospice agency.  These are my recommendations for that:

1- check out the Medicare rankings of home health agencies.  See our previous blog post about that:

www.brainsupportnetwork.org/sf-bay-area-home-health-agencies-rated-on-medicare-site/

2- attend a local support group meeting and ask what agency others have used.

3- if you are a Brain Support Network group member, check the group membership directory for someone in your local area.

4- ask at your place of worship.

5- if your family member lives at a care facility, ask the management and other residents’ families.

6- if your family is receiving home health services, ask if the home health agency has a hospice counterpart.

7- if your family is receiving home care services through an agency or experienced private individual, ask if the agency or individual has a recommendation.

8- use the Washington Post’s hospice comparison guide.   See our previous blog post about that:

www.brainsupportnetwork.org/washington-posts-hospice-guide-and-how-to-evaluate-a-hospice-agency/

9- get the low-down on sites like Yelp or Nextdoor.

INTERVIEWING AGENCIES

Assuming there are a couple of choices available in your area, it’s best if you interview at least two hospice agencies.  Here are two posts about questions to ask when selecting a hospice agency:

www.brainsupportnetwork.org/choosing-a-hospice-16-questions-to-ask/

www.brainsupportnetwork.org/questions-to-ask-when-selecting-a-hospice-agency/

IMPORTANT NOTES

* In general, I prefer non-profit hospice agencies.

* Be sure you know that you can change agencies!

Robin