“Losing her mind and watching it go: the slow suffering of Lewy body disease”

This article in The Guardian (US edition) is about Kathleen Anduze, who lives in upstate New York and has a diagnosis of dementia with Lewy bodies. As the article says, everyone’s course with DLB is individual. So while Kathleen bemoans the loss of her imagination, others with DLB may not detect that loss.

The Brain Support Network group member that forwarded this article on to me was somewhat reluctant to do so. LBD seems to be lots more in the news now because of the statement by Robin Williams’s widow that he committed suicide not due to depression but due to DLB symptoms. But, the group member believes that the latest stories about LBD seem to have a sensationalist quality to them. Judge for yourself….

See: http://www.theguardian.com/society/2015/nov/17/dementia-lewy-bodies-disease-kathleen-anduze-robin-williams

Dementia
Losing her mind and watching it go: the slow suffering of Lewy body disease

“It is the second most common form of dementia and yet little is known about the disease that led to the death of Robin Williams. Rose Hackman tells the story of the Anduze family, and how Lewy body disease has forever changed their lives.”

by Rose Hackman
The Guardian
Tuesday 17 November 2015 08.00 EST

Robin

Three-Minute Test to Diagnose LBD?

Medscape Medical News offers an email summary of medical journal articles. In yesterday’s email, they offered a summary of a new three-minute test to diagnose Lewy Body Dementia. The test is developed by Dr. Jim Galvin, an LBD expert. I’ve copied the summary below, plus a link to the journal article that describes the test.

I need to read the full medical journal article but the last one I read along these lines (that focused on fluctuating cognition) didn’t truly differentiate those with Lewy Body Dementia, Alzheimer’s, or Parkinson’s. We know from brain donation that lots of people don’t have “pure” LBD; they have LBD and AD. So I’m not sure how helpful such a three-minute test is. (Note that I’ve helped one of Dr. Galvin’s patients with brain donation. Dr. Galvin diagnosed the gentleman as having LBD; autopsy showed not a single Lewy body in the brain.)

Here are four key points from the summary:

  • LBD includes both dementia with Lewy bodies (DLB) and Parkinson’s disease dementia. The new test, called the Lewy body composite risk score (LBCRS), was derived from clinical features in autopsy-verified cases of healthy controls, Alzheimer’s disease (AD), DLB, and PD with and without dementia.

    Robin’s note: The autopsy-verified cases of AD, DLB, PD, and healthy controls were described in a study in 2006. In that study, “Features that predicted Lewy bodies at autopsy included extrapyramidal signs, cognitive fluctuations, hallucinations, and sleep disturbances.” Only 20 DLB brain donors were included in that study. That’s not a very big number.

  • Such a test might speed up a diagnosis of DLB and spare families a lot of strain and patients possible harm. An earlier study showed that these patients “had to see multiple doctors over multiple visits and 50% of the time they got a wrong diagnosis that eventually had to be corrected,” said Dr Galvin.
  • (Dr. Galvin) added that half of the wrong diagnoses weren’t harmful, but the other half could have been. For example, some patients were diagnosed with a psychiatric disorder, such as schizophrenia “even though they were in their 70s and 80s,” and were put on the antipsychotic haloperidol, which is “potentially harmful and possibly fatal in this population,” he said. Some patients were never given a diagnosis at all, even after seeing multiple doctors. “People were wondering what was going on and nobody was there to help them,” said Dr Galvin.
  • But would [a correct diagnosis of Robin Williams] have saved his life? “While Lewy body dementia itself doesn’t increase the risk for suicide, if you have someone who is not correctly diagnosed or isn’t completely diagnosed and they don’t know what’s going on, they can make decisions that can be harmful to themselves,” said Dr Galvin.

See: www.medscape.com/viewarticle/854577  (You need to be a registered user for access. I believe registration is free.)

Medscape Medical News > Neurology
Three-Minute Test for Lewy Body Dementia
Pauline Anderson
November 16, 2015

Robin

Special Report on Caregiving, including article on tech gadgets (AARP Bulletin, Nov 2015)

The AARP Bulletin has a special report on caregiving in its November 2015 issue. November is national family caregivers month.

There’s a good article on tech gadgets, such as fall-prevention lighting and a floor-mat alarm, here: www.aarp.org/home-family/caregiving/info-2015/caregiving-gadgets-technology-caregiver.html

In the print version of the AARP Bulletin, there are short articles on these topics:

  • The Demands and Rewards of Dementia Patients
  • Millions of Millennials Are Giving Back
  • Dealing with Veterans’ Invisible Wounds
  • More Men Fill Traditionally Female Role
  • Squeezed Between Two Generations with Needs
  • When Caregiving is Round the Clock
  • Taking on Complex Medical Tasks

Each article is short. For me, the most interesting were about round-the-clock caregiving and taking on complex medical tasks.

You can find a link to the articles here:  www.aarp.org/home-family/caregiving/info-2015/caregivers-profiles-depression-cancer-arthritis.html  (Online, it appears as one long article rather than several smaller articles.)

And there’s a link to a list of resources and services:  www.aarp.org/home-family/caregiving/info-2015/caregiving-help-resources-caregivers.html

Robin

“What is Lewy Body Dementia” (11-6-15 Caring.com article)

Lewy Body Dementia has been in the press a lot this week. (Probably you’ve all heard from family and friends about this.) On Wednesday, I was called by a writer with the website Caring.com. The writer wanted to do an overview of LBD and emphasize the value of caregiver support groups. After attempts to try to get the writer to contact some of our LBD caregiver support group members, I gave in for an interview as she was on a short deadline. The article was posted online today. Group member Helen M. told me it turned out okay. Judge for yourself! I played a minor role. The other people interviewed were Angela Taylor from the LBDA and a Santa Ynez Valley LBD caregiver.

See: https://www.caring.com/articles/what-is-lewy-body-dementia

What is Lewy Body Dementia?  What You Should Know About the Disease that Afflicted Robin Williams, Estelle Getty and Millions More
By Laura Dixon, Caring.com editor
Posted November 6, 2015

Robin

Article on caring for a mother with LBD (December 2014, Washington Post)

This December 15, 2014 article in the Washington Post is by essayist Candy Schulman, whose mother had Lewy Body Dementia.  Candy was a long-distance caregiver for her mother.  The article’s title says that “Lewy body dementia has symptoms even worse than those of Alzheimer’s.”

You can find a link to it here:

https://www.washingtonpost.com/national/health-science/lewy-body-dementia-has-symptoms-even-worse-than-those-of-alzheimers/2014/12/12/a0ca05a0-69a9-11e4-a31c-77759fc1eacc_story.html

Health & Science
Lewy body dementia has symptoms even worse than those of Alzheimer’s
Washington Post

By Candy Schulman
December 15, 2014
Robin

Good overview of LBD in Wednesday’s Washington Post

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

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

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