Distinguishing Alzheimer’s from Dementia with Lewy Bodies

Here’s an easy-to-read newspaper article from Science Daily (sciencedaily.com) on using “changes in alertness and cognition” to help distinguish Alzheimer’s Disease (AD) from Dementia with Lewy Bodies (DLB).  A local support gorup member suggested this is a good article to give family and friends about Lewy Body Dementia.

Robin
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www.sciencedaily.com/releases/2004/01/040116080751.htm

New Method Of Distinguishing Alzheimer’s From Lewy Body Dementia
Source: American Medical Association
Science Daily
Published 1/16/04

NEW YORK — Looking at specific changes in alertness and cognition may provide a reliable method for distinguishing Alzheimer’s disease (AD) from dementia with Lewy bodies (DLB) and normal aging, according a new study from the January 27, 2004, issue of Neurology, the official journal of the American Academy of Neurology, co-authored by Tanis J. Ferman, Ph.D., an expert on DLB.

Lewy bodies are round collections of proteins in the brain that are considered the pathological hallmark of Parkinson’s disease. Lewy bodies are never found in healthy normal brains. In Parkinson’s disease the Lewy bodies are largely localized to an area of the brain stem called the substantia nigra. In DLB, Lewy bodies are also found in brain’s cortex.

Although DLB accounts for as much as 20 to 35 percent of the dementia seen in the United States, treatment and diagnosis is often complicated by a lack of information about the disease. In the study, Dr. Ferman and colleagues examined episodes of fluctuation in cognition (problems in thinking or concentration) experienced by individuals with AD or DLB or normal older adults who had no signs of dementia.

“Fluctuating cognition is an important symptom of DLB but has been the center of some controversy because it is comprised of a number of behaviors, some common to all dementias and perhaps even found in normal aging,” said Dr. Ferman, assistant professor and clinical neuropsychologist in the department of psychiatry and psychology at the Mayo Clinic in Jacksonville, Fla. “Even though attempts have been made to carefully describe these behaviors, they have not been used reliably as diagnostic tools.” Dr. Ferman spoke today at an American Medical Association media briefing on Alzheimer’s disease in New York City.

Some of the common behaviors of DLB that comprise fluctuating cognition include episodes of confusion, excessive sleepiness, a waxing and waning of cognition, inattention, incoherent speech and varying ability to perform tasks. When this occurs, family members often describe their loved ones as “zoned out,” or “not with us.” This collection of behaviors is called fluctuations because these behaviors come and go. In the study, 200 normal older adults, 70 patients with AD and 70 patients with diagnosed DLB were compared on aspects of fluctuating cognition. Spouses, adult children or others involved with the subject on a day-to-day basis provided information.

Four characteristics significantly distinguished patients with DLB from persons with AD and normal elderly controls: daytime drowsiness and lethargy despite getting enough sleep the night before; falling asleep two or more hours during the day; staring into space for long periods and episodes of disorganized speech.

“For the normal elderly control group, one or two of these behaviors was found in only 11 percent of the group,” said Dr. Ferman. “For the patients with AD, one or two of these behaviors were not uncommon, but over 63% of the patients with DLB had three or four of these behaviors. This gives us a clear set of behaviors to use to reliably distinguish the fluctuations of Lewy body dementia from Alzheimer’s.”

“Medications that may be helpful to an Alzheimer’s patient may actually aggravate DLB symptoms such as hallucinations and symptoms of parkinsonism. Other medications that are only marginally helpful in AD sometimes have a dramatic impact on Lewy body dementia,” said Dr. Ferman. “It’s very important to diagnose correctly because proper treatment can help us manage symptoms and help caregivers cope.”

Both AD and DLB are dementias, that is, classified by a decline in thinking skills greater than expected by age that interferes with the activities of daily living, explained Dr. Ferman. In AD the first loss in thinking skills is in memory; in DLB the earliest loss appears to be with attention and visual perception. These differences may be related to different patterns of damage to the brain. In addition, patients with DLB may have fully formed hallucinations, Parkinson-like movement problems and/or fluctuating cognition. These symptoms may be present in late-stage AD, but one or all of them are present in early DLB.

“As our understanding and ability to recognize Lewy body dementia has improved, there has been an explosion of research,” said Dr. Ferman. “As we develop effective treatments to prevent or delay progression of DLB, early diagnosis will be key.”

Note: This story has been adapted from a news release issued by American Medical Association.

Mayo Clinic Jacksonville Protocol and Shipping Instructions

Brain Support Network helps families make arrangements to donate a loved one’s brain for research and so the neurological diagnosis can be confirmed.

Most of the time, the Mayo Clinic in Jacksonville, Florida (“Mayo Jax”) is the brain bank where these brains are donated.

Below, we list the latest research protocol for Mayo Jax.  In short, the whole brain must be removed within 24 hours of death though note that 12 hours of death is preferred. (And even sooner is better.)  The brain is split in half.  The right half is frozen while the left half is fixed.  (We remember this by noting that frozen contains an “R” as does right.)

Also find below the shipping instructions for Mayo Jax. Note that the brain bank provides containers and dry ice, and pays for FedEx shipping.

Plus, we include below Brain Support Network’s tissue handling and shipping suggestions. With experience in monitoring the shipments of over 2,000 hemibrains, Brain Support Network has witnessed many tissue handling, packaging, and shipping errors.


Mayo Clinic Jacksonville – Research Protocol

Last Updated:  February 2016

Thank you for enabling us to establish a diagnosis of neurological disease and to obtain tissue for special studies and research in neurological diseases. Please perform the harvest as soon as possible after death, preferably within 12 hours (up to 24 hours is still acceptable). The time lapse between death and autopsy should be noted as well as the fresh brain weight when drained of CSF.

Split the brain down the middle through the corpus callosum, cerebellar vermis and brainstem. Put the right hemisphere in a plastic bag into the coldest possible freezer (preferably at -70˚C). In order to prevent distortion of the specimen, put the medial aspect of the brain down flat, so that it will freeze in its normal shape. The left hemibrain is simply immersed in formalin, buffered to neutrality.

We will send the report of our findings to you. We can also provide an extra set of slides, if desired. We will provide a letter and a copy of the report to next-of-kin regarding our findings.

Please call Dr. Dickson if you have any questions: (904) 953-2439 or (904) 953-7137.


Mayo Clinic Jacksonville – Shipping Instructions

Last Updated:  February 2016

When ready to ship, the frozen specimen is packed in 48 hours worth of dry ice in a Styrofoam shipping container. The formalin fixed specimen is wrapped in paper towels that are damp with formalin, put into a leak-proof plastic bag in a separate shipping container, wrapped separately from the frozen one.

The Autopsy Information Form should be filled out and sent along with the tissue. Both boxes (do not tie together) are to be sent overnight by Federal Express, Priority One Delivery. We can provide shipping containers and dry ice if needed, and will be happy to provide you with our FedEx number to cover the cost of shipping the tissue.

Both packages should be addressed to:

Dennis Dickson, M.D.
Mayo Clinic Jacksonville
Birdsall 347
4500 San Pablo Road
Jacksonville, FL 32224
(904) 953-2439 or (904) 953-7137

Please send the tissue early in the week so as to avoid delivery during the weekend when no one will be here. Do not ship on Thursdays or Fridays.



Brain Support Network’s Packaging and Shipping Suggestions

Last Updated:  July 2022

With experience in monitoring the shipments of over 2,000 hemibrains, Brain Support Network has witnessed many tissue handling, packaging, and shipping errors. Here are our suggestions.

When to Ship

1.  For the integrity of the fixed tissue, it is highly preferred that the fixed hemisphere be fully fixed in formalin before sending. Ideally, the frozen hemisphere is sent at the same time as the fixed hemisphere but we recognize that many pathology service providers prefer to send the frozen hemisphere as soon as possible (keeping in mind Mayo Jax’s shipping requirements).

2. Brain tissue must be shipped early in the week because there’s no one at Mayo Jax to receive the shipment on the weekends. Never ship on Thursday or Friday, and do not ship when the next day is a holiday. Given recent problems with FedEx and containers with dry ice, we strongly advise against shipping on Wednesday. Best to ship on Monday or Tuesday, and track the shipments closely.

Around the year-end holidays, it is best to check with Mayo or Brain Support Network in advance of shipping. Mayo often requests that shipments be delayed during this period until early January.

3. Before shipping, please check the FedEx website for service alerts to be sure that there are no weather conditions in Florida, Tennessee (FedEx hub), or other locations that would delay shipping. FedEx has a link on its website to the National Weather Service’s weather map, showing severe weather. Note that hurricane season officially begins on June 1st every year.

Packaging the Containers

4.  The formalin fixed-specimen (left hemibrain) should be wrapped in formalin-soaked towels and double-bagged.  Take care not to over-fill the “inside” bag with formalin as leakage/spoilage was a recent problem that resulted in FedEx suspending transport of a shipment.

5.  Double bag the frozen tissue (right hemibrain) prior to shipping.  Never use RED biohazard bags as dry ice damages this type of plastic and this can destroy the tissue.

6.  Label the “outside” bag of the fixed and frozen tissue with the donor’s name and DOB, using a dark colored Sharpie marker. Write directly on the bag. Do NOT use stick-on labels or tape, as these fall off.

7.  Dry ice only should be used for the right hemibrain (frozen half). Under no circumstances should wet ice be used for shipping.

8.  The pathology information sheet must be included in each of two containers. You can also include the medical information sheet, if you have that available.

FedEx Issues

9.  Note that some pathology service providers have reported that FedEx has been unwilling to pick up or accept containers with dry ice. Please double-check with FedEx delivery staff who pick up from a usual location as to whether they have a problem with picking up dry ice. If you intend to drop off containers, note that regular FedEx locations will accept containers with dry ice. Many FedEx Office locations will not. If you have questions about this, please call 1-800-GoFedEx.

We’ve also had the situation where FedEx has accepted a container with dry ice, only to return it or delay delivery.  Once, in January 2016, a regular FedEx location accepted the package containing dry ice and then returned it to the pathology specialist’s address a few hours later, offering no explanation as to why it had been accepted earlier at the FedEx location only to be rejected later.  Twice in May 2016, FedEx delayed the delivery to Mayo of two containers where the label showed dry ice (“ICE”) was included.  Fortunately in both cases, tissue was shipped out on a Monday so we had a couple of days’ leeway to address the problem with FedEx.

Alerting Brain Support Network!

10. Immediately after shipping, please send a cell phone photo via text to Brain Support Network (cell phone 650-814-0848 – accepts texts) of the tracking numbers of the two containers.  Or, send an email.

 

Purchasing a clock

Here’s an interesting blog post from my caregiver friend Eric, whose father-in-law has dementia, about reading time versus telling time:

pragmaticcaregiver.blogspot.com/2007/05/does-anybody-really-know-what-time-it.html

Eric offers a few guidelines about clocks for those with cognitive impairments:

1-  When selecting an analog clock, look for a clear, high contrast face.

2- Simple block numbers with distinct minute and hour hands.

3- No Roman numerals and no stylized designs that omit numbers.

4- For digital clocks, be wary of displays that present too much.

Robin

 

Tips for Caregivers – Dr. Andrew Weil

Recently I came across Dr. Andrew Weil’s tips for caregivers in the health section of the online USA WEEKEND Magazine. (I read about it on an LBD-related discussion group.)

He insists that caregivers need to “maintain [their] own body and spirit while seeing [a] loved one through illness.”

Editor’s Note: Article no longer available

http://www.usaweekend.com/07_issues/070506/070506caregivers.html

Taking care of the caregiver
It’s not all about the sick person, says the famous holistic doctor. To polish your bedside manners, follow these 8 tips.
By Andrew Weil, M.D.
USA WEEKEND Magazine
May 6, 2007

Though Dr. Weil says he has eight tips for caregivers, I count nine! They are:

1- Put yourself high on the priority list.

2- Realize that you may experience resentment.

3- De-stress yourself.

4- Don’t forsake sound nutrition habits.

5- Exercise matters, too.

6- Be careful about alcohol.

7- Plan something to look forward to.

8- Find someone who has successfully done what you’re doing.

9- Be prepared to say goodbye.

As part of his suggestions, he recommends one book in particular:

“There are great books to help people deal with their feelings. A favorite of mine is ‘A Year to Live’ by Stephen Levine.”

This short article is worth reading.

Robin

Clock for meal times and bed time

My caregiver friend Eric, whose father-in-law has dementia, has developed a 24-hour “meal clock.”  His father-in-law kept getting confused as to what time it was and whether it was time to eat or sleep.  Check out Eric’s ingenious approach here:

pragmaticcaregiver.blogspot.com/2007/05/id-like-to-buy-clue-part-1.html

A standard (cheap) wall clock can be modified to show standard meal times and bed time for the person you are caring.

Let me know if you give it a try and if it works for you!

Robin