Recommended book on DLB/PDD by Dr. Ahlskog – “Patient, Family and Clinician Working Together”

Recently I purchased a book by Eric Ahlskog, MD, PhD, a well-regarded movement disorder specialist at Mayo Rochester.  The book title is “Dementia with Lewy Bodies & Parkinson’s Disease Dementia:  Patient, Family, and Clinician Working Together for Better Outcomes.”

I’ll put it in our support group lending library for someone to borrow at the next support group meeting.  By the way, if you are interested in making an in-kind donation of books to the support group, a non-profit organization, let me know.  Our wish list is long!

I read three chapters today — one on background, one on symptoms/diagnosis, and one on treatment — and skimmed through the rest.  Based on three chapters, I’d say this is a wonderful book.  It contains the precision of a researcher and clinician, but worded in such a way that we laypeople can understand.  I’ve copied a few excerpts below.

There isn’t anything new in the book for me, but I’ve been reading about Lewy body diseases for quite awhile.  There may be new things for you!

Robin

—————————————————————

Excerpts from:

Dementia with Lewy Bodies & Parkinson’s Disease Dementia:  Patient, Family, and Clinician Working Together for Better Outcomes
by Eric Ahlskog, MD, PhD

Background
“The dementia of both DLB and PDD is due to the Lewy body neurodegenerative process.  However, three other factors also contribute, to varying degrees.  By themselves, these other three factors are not the primary causes of dementia in Lewy conditions but are additive…  One such factor is cerebrovascular disease, which may be…unrecognized; it may also manifest as brain atherosclerosis (hardening of the arteries).  Atherosclerosis of small brain arteries is the reason for leukoaraiosis, which is the white blush present to varying extents on the [MRI] brain scans of older adults.  Treating risk factors for such cerebrovascular disease, especially earlier in life, is wise; however, once dementia is present it may be too late.  Such risk factors include hypertension, diabetes mellitus, elevated cholesterol., smoking, and lack of exercise.”

“A second contributor to dementia, but not a major factor in DLB or PDD, is Alzheimer brain pathology…  Such microscopic changes slowly accumulate with aging in most humans, even those without dementia.  In many older adults they are modest and not sufficient to result in dementia.  However, in a brain already challenged with Lewy neurodegenerative pathology, there is little reserve; a small degree of brain Alzheimer pathology will be additive.  Such changes are noted in many, but not all, with DLB or PDD.”

“Finally, contributing to the dementia of DLB and PDD is normal brain aging.  With passing decades of life our brains shrink, which is very apparent on MRI brain scans in those over age 80 years.  This is primarily due to loss of brain connections as part of the aging process.  Although there is a modest, age-related loss of brain cells (neurons), the primary reason for brain shrinkage is loss of synapses and the connecting neuron circuitry (axon terminals, portion of dendrites).  Fortunately, many older adults without Alzheimer’s or Lewy disease are able to compensate for this age-related brain shrinkage, but it is additive if neurodegenerative disorders are present.”

Why and How Do We Distinguish DLB from PDD?
“PDD starts as Parkinson’s disease, which then progresses to include dementia; those with DLB start out with dementia.  Are these just different ends of a single spectrum?  Are they really the same disorder?  This is an unresolved question.”

“Parkinson’s disease is devoid of intellectual problems when it first develops.  In contrast, cognitive impairment is present at the onset of DLB, sometimes with parkinsonism delayed.  In fact, some people with DLB never experience parkinsonism.”

“How do researchers make the distinction? … An international consensus panel has institute the so-called 1-year rule to separate DLB from PDD. … Obviously, this is a little arbitrary, but such distinctions help researchers clearly define what they are studying.  In the clinic, where clinicians deal with real people and their problems, that distinction is less crucial.”

Fluctuations in Thinking and Alertness
“Unique to these Lewy dementias is the fluctuation of mental clarity.  People with DLB or PDD may be alert and lucid during portions of the day, but inexplicably confused several hours later.  This is a hallmark of DLB and PDD.  Daytime drowsiness may similarly fluctuate like this, although there may be other treatable reasons for sleepiness…  The reason for these fluctuations in mental clarity is unknown.”

Caregiver Resources on Oral Care, Dry Mouth, etc.

Near the end of a New York Times article about the new website toothwisdom.org — which aims to make it easier to find affordable dental care — there’s reference to four good resources for caregivers:

#1 – 17-minute video on providing daily oral care to someone with dementia.  Though this video is for CNAs and RNs working in nursing homes, all caregivers can find value here.  I suggest starting the video at 3:20; the topic is oral care evaluation.  Or start about 6:00, when the topic is brushing someone’s teeth.  Tooth brush handles are modified about 8:40 and again at 12:15.

teeth.bluestatedigital.com/pages/for-caregivers

#2 – blog post on causes and treatment of dry mouth (xerostomia):

toothwisdom.org/resources/entry/overcoming-dry-mouth

#3 – brochure on causes, symptoms and treatment of dry mouth from NYU Dentistry

s.bsd.net/teeth/default/page/-/NYU0336_EC_DryMouth_V6.pdf

#4 – complications for oral health in older age:

toothwisdom.org/resources/category/complications-in-older-age

Several of the people posting comments on the New York Times article mentioned this resource:

#5 – discount dental plans available from various businesses, such as:

dentalplans.com
Here’s the info on the New York Times article, though the best parts are the references provided above:

newoldage.blogs.nytimes.com/2013/10/08/a-guide-to-affordable-dental-care/

The New Old Age: Caring and Coping
The New York Times
A Guide to Affordable Dental Care
By Catherine Saint Louis
October 8, 2013, 11:57 am       

Robin

New Way to Pay for Long-Term Care? (sell life insurance policy)

This recent article in the New York Times is titled “A New Way to Pay for Long-Term Care.”  I really think there should be a question mark at the end of that title!  The “new way” is selling your life insurance policy to a company.

A local support group member mentioned that this is what she was doing years ago; her husband had died, she has no children, and she thought this would be a good way to proceed.

I suggest you speak with a certified financial planner or someone qualified before you take action based upon this newspaper article!

Here’s a link to the article:

newoldage.blogs.nytimes.com/2013/10/09/a-new-way-to-pay-for-long-term-care/

The New Old Age: Caring and Coping
A New Way to Pay for Long-Term Care
The New York Times
By Paula Span
October 9, 2013, 1:36 pm

Robin

New Way to Pay for Long-Term Care? (sell life insurance policy)

This recent article in the New York Times is titled “A New Way to Pay for Long-Term Care.”  I really think there should be a question mark at the end of that title!  The “new way” is selling your life insurance policy to a company.

A local support group member mentioned that this is what she was doing years ago; her husband had died, she has no children, and she thought this would be a good way to proceed.  Though I have an MBA from Wharton, I’m afraid I am inept at managing my own finances.  I advise you to speak with a certified financial planner or someone qualified before you take action based upon this newspaper article!

Here’s a link to the full article:

newoldage.blogs.nytimes.com/2013/10/09/a-new-way-to-pay-for-long-term-care/

The New Old Age: Caring and Coping
The New York Times
A New Way to Pay for Long-Term Care
By Paula Span
October 9, 2013, 1:36 pm

Robin

CBD Treatment – brief info (Neurology Study-Guide, October 2013)

“Continuum” is a journal published by the American Academy of Neurology.  Its subtitle is “Lifelong Learning in Neurology.”  It’s a study-guide for neurologists.  Every year or maybe every other year they have an issue devoted to movement disorders.  Within that issue, there’s always an article on three parkinsonian syndromes — PSP, MSA, and CBD.  This year’s article has two authors — Dr. Irene Litvan, who was the keynote speaker at our October 2012 atypical parkinsonism symposium, and Dr. David Williams, a rising star in the atypical parkinsonism community.  (Unfortunately for us, Dr. Williams lives in Australia.)

The study-guide is available at no charge online:

www.ncbi.nlm.nih.gov/pmc/articles/PMC4234134/

Continuum (Minneap Minn). 2013 Oct; 19(5 Movement Disorders): 1189–1212.
Parkinsonian Syndromes
David R. Williams, MD, MBBS, PhD, FRACP and Irene Litvan, MD, FAAN

The CBD-related section of the study-guide has three parts:

#1 – a description of the classic type of CBD.  There are actually five types of CBD.  CBD-CBS is considered the “classic type.”

Video is available of someone with CBD-CBS, the classic type.  Dr. Litvan is heard/seen in this video.  She showed us this same video in October 2012.  There is a case report of the same woman as in this video.  I’d suggest focusing on the case report and the video.  There is also new diagnostic criteria for CBD-CBS.

There is also a short description of the CBD-PSP type.

#2 – a two-sentence “natural history.”  (Sadly we know so little about CBD.)

#3 – treatment paradigm.  Again, this is a very short section.  The key sentences are these:

“The most useful symptomatic therapies are those targeting myoclonus (eg, valproic acid, clonazepam, levetiracetam, and piracetam) and dystonia (eg, botulinum toxin) when they affect the patient’s quality of life. Treatment of dystonia is indicated when the contractures cause pain or impede hygiene.”

Robin