Short summary of Lewy body dementia (Johns Hopkins, 1-21-13)

This short summary of Lewy Body Dementia was in a Johns Hopkins Health Alert recently.  If you sign up to receive these health alerts, note that Johns Hopkins uses the email list to try to sell its publications, and the same alert can be sent out multiple times over a few-month period.

Accurate diagnosis of LBD is quite difficult.  Of the brain donation
cases I’ve handled, LBD is found upon brain investigation less than half the time.  Locally, the diagnostic accuracy rate is much higher! LBD commonly co-occurs with Alzheimer’s pathology and other pathologies, which makes an accurate diagnosis while the person is alive very difficult.

Robin

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www.johnshopkinshealthalerts.com/alerts/memory/Lewy-Body-Dementia_6446-1.html

Talking About Lewy Body Dementia
Johns Hopkins Health Alert
Posted in Memory on January 21, 2013

Lewy body dementia is a form of dementia that accounts for 5 to 15 percent of all dementia cases. Lewy bodies — named for Frederick Lewy, the physician who first identified them in 1912 while working in the laboratory of Dr. Alois Alzheimer — are tiny spherical deposits of a protein called alpha-synuclein that are found in the brains of patients with Lewy body dementia. The presence of Lewy bodies throughout the brain disrupts the brain’s normal functioning.

There is considerable overlap between Lewy body dementia and two other disorders: Alzheimer’s disease and Parkinson’s disease. In Lewy body dementia, patients experience a loss of dopamine-producing nerve cells similar to that seen in Parkinson’s disease. They also lose acetylcholine-producing nerve cells, similar to what occurs in Alzheimer’s disease.

Patients with Lewy body dementia often experience cognitive problems associated with Alzheimer’s disease, such as memory loss, spatial impairment and language difficulties. They may also develop parkinsonian symptoms, such as muscle rigidity, a blank facial expression, soft voice, tremor, poor balance and gait disturbances. Some patients initially diagnosed with Parkinson’s disease later go on to develop a dementia that closely resembles Lewy body dementia.

Certain symptoms of Lewy body dementia help distinguish it from
Alzheimer’s disease and other forms of dementia. For example, unlike people with Alzheimer’s disease, Lewy body dementia patients often experience detailed and extremely vivid hallucinations early in the illness. People with Lewy body dementia also tend to show marked fluctuations in their cognitive functioning, often several times a day. In addition, they tend to fall asleep easily during the day and have restless, disturbed sleep with behavioral acting out.

Recognition of these symptoms leads to an accurate diagnosis of Lewy body dementia. A correct diagnosis is particularly important because the medical management of patients with Lewy body dementia presents special challenges. The drugs that are normally used can aggravate other problems and cause potentially serious adverse reactions. In particular, antipsychotic (neuroleptic) drugs can provoke dangerous side effects, including a return to psychosis, and must be used cautiously, if at all. In addition, levodopa, a drug normally used to treat parkinsonian symptoms, may worsen hallucinations, so its dosage needs to be carefully adjusted in patients with Lewy body dementia.

“3 Questions to Ask About Assisted Living Memory Care Communities”

This post will be of interest to those who may be looking at memory care facilities for their loved ones with dementia.  (This is the name given to care facilities that specialize in caring for those with dementia.  Since the most common dementia is Alzheimer’s Disease, and AD has prominent memory issues, these facilities use the word “memory care” rather than “dementia care.”)

Steven Russell, BSN’s treasurer, recently came across a column in the Huffington Post in December 2011 on three broad questions to ask memory care facilities:

1- how good is the quality of care?
2- how rich and individualized is the activity program?
3- how well-designed and maintained is the place?

For each broad question, there are many sub-questions provided.  The article was written by Marguerite Manteau-Rao, the Palo Alto-based social worker who is a long-time BSN friend.

Here’s a link to the article:

www.huffingtonpost.com/marguerite-manteaurao/memory-care-communities_b_1155043.html

3 Questions to Ask About Assisted Living Memory Care Communities
by Marguerite Manteau-Rao, LCSW
Huffington Post
Posted 12/21/11

Robin

 

 

“At-home caregivers face challenges, sacrifice” (SJMN, 12-2-12)

This post is about at-home caregivers.

Lisa Krieger, a journalist at the San Jose Mercury News (mercurynews.com), has been doing a wonderful series on the cost of dying.  Local Brain Support Network member Lana pointed out Lisa’s most recently installment in the series at the most recent caregiver support group meeting.  Lana noted that the most recent installment isn’t really about the cost of dying but addresses the physical, emotional, and financial toll on family caregivers in taking care of loved ones at home.  Others at the meeting who had also read the article said it was right on target.

The article mentions Barbara Gruenwald, another member of our local Brain Support Network group.  Barbara cares for her husband with Lewy Body Dementia.

There are two interesting graphics in the article, which are worth checking out online.  One graphic shows the relative cost of assisted living, nursing home, adult day services, home health aide, and homemaker services.  (I’m not really sure they meant to say “home health aide.”  I thought the industry called these “personal care aides.”)  This graphic shows what a great deal adult day services are.  I encourage you all to consider this.

The other graphic shows the ages of “informal caregivers.”  We see a very similar breakdown in our local support group — most people are in the 50-64 year old category, and the second most people are in the 35-49 year old category.  However, we don’t have many 18-34 year olds in our local support group.  We have lots of group members over 65 and some over 75.

If you go to the SJ Mercury News website, there’s a 9-minute video narrated by Lisa Krieger.  The video is not as compelling as the article.

Here’s a link to the article:

www.mercurynews.com/bay-area-news/ci_22102247/cost-dying-at-home-caregivers-face-challenges-sacrifice

Cost of Dying: At-home caregivers face challenges, sacrifice
By Lisa M. Krieger
San Jose Mercury News
Posted:   12/02/2012 05:16:55 PM PST

Robin

“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:

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

“When Illness Makes a Spouse a Stranger”

Yesterday’s New York Times had a terrific general story about dementia turning a spouse into a stranger.  Those within Brain Support Network dealing with LBD, PSP, and CBD may find this article of interest.

It’s the story of a Manhattan-based couple.  Before the husband was diagnosed with frontotemporal dementia in his 60s, the wife was considering divorce.  The wife talks about losing control when dealing with her husband, and grieving though he’s still alive.  Eventually, the wife had to place him in a care facility for both of their safety.  She spends several hours a day with him.

The wife notes that MDs are at a loss to forecast the progression:

“They can tell you everything that’s ever happened to anyone, but they can’t tell you what’s going to happen to you,” she said.

Here’s a touching video about this couple:

www.nytimes.com/video/health/100000001343193/in-love-and-loss.html

Dr. Bruce Miller from UCSF’s Memory & Aging Center is quoted frequently as UCSF is one of the lead institutions in the US for FTD research.  He says:

“I think at least some subtypes of frontotemporal dementia will be the first neurodegenerative diseases we find a cure for.” 

According to this article, there are eight sub-types of FTD.  Sometimes CBD and, less often, PSP are considered FTD sub-types.

The first article has a short mention of Richard Rainwater, who has PSP:

“But even if treatments or cures for frontotemporal dementia do emerge, they will almost certainly come too late for people with advanced cases, like … Richard Rainwater, a billionaire investor who learned in 2009 that he had progressive supranuclear palsy, which some consider a form of frontotemporal dementia. Mr. Rainwater and his family have donated more than $20 million to a research consortium, but given that he has a rapidly progressive form, any advances from the consortium may be more likely to help others than to save him.”

(I assume that if Mr. Rainwater has a “rapidly progressive form” of PSP, this means he has the Richardson’s Syndrome form, which includes dementia as a primary symptom.)

Here’s a link to the full article:

www.nytimes.com/2012/05/06/health/a-rare-form-of-dementia-tests-a-vow-of-for-better-for-worse.html

New York Times
The Vanishing Mind
When Illness Makes a Spouse a Stranger
By Denise Grady
May 5, 2012

Robin