ProPublica’s Vital Signs Project, including standing with federal health programs

ProPublica ( launched yesterday a project called “Vital Signs.”  You can access Vital Signs at no charge here:

In its announcement about the project, ProPublica says it “has accumulated a wealth of data about how medicine is really practiced in the U.S. We’ve got millions of data points on things we believe everyone should know about his or her providers, like whether they’ve been barred from federal health care programs, their prescribing and treatment patterns, and how much money pharmaceutical companies pay them for things like consulting and speaking.”

You can subscribe to email alerts when ProPublica obtains new information on something of interest to you.

ProPublica says:  “Our health care databases, including Dollars for Docs and Prescriber Checkup, have long been among the most popular features of our site, and are a key part of the mission of our data team — to help people use data to make better choices and live better lives. … New to this project is data on health care providers who have been kicked out of government health programs. For the first time, you’ll be able to see your provider’s standing.”

Vital Signs covers five general areas:
* Standing With Federal Health Programs
* Office Visits and Costs
* Relationships with Pharmaceutical and Device Companies
* Prescribing Patterns and Habits
* Surgical Performance

Sounds like this is worth checking out….


Multimodal Imaging Ties Tau to Neurodegeneration, and Symptoms

This is an Alzforum ( article about important researcher into tauopathies by researchers at Mass General.  The article was posted last week to Alzforum; the research study was published online in JAMA Neurology a couple of weeks ago.

What the researchers confirmed is that there is a “tight correlation between tau neurofibrillary tangles and neurodegeneration in individual patients in early clinical stages of various forms of Alzheimer’s disease.”  Three patients with typical Alzheimer’s Disease (AD) were studies, and three patients with atypical AD were studied.  One of the “atypical AD” cases was a person with corticobasal syndrome (CBS)

In this study, all patients were given a tau PET scan, an amyloid PET scan, and an MRI.  Researchers found that “tau predicts atrophy [which] predicts symptoms.”  It is not the protein amyloid in the brain that predicts atrophy or predicts symptoms.

In fact, we have known this from brain donation for a long time but now researchers have confirmed this in living patients.

Perhaps one reason that a CBS patient was studied rather than a PSP (progressive supranuclear palsy) patient is that the tau load in CBD is greater than in PSP.

Here’s a link to the article:

Multimodal Imaging Ties Tau to Neurodegeneration, and Symptoms
07 Mar 2017

It is challenging reading.  Check it out online for cool images of the patient with corticobasal syndrome.


Alzheimer’s Australia fact sheets on Lewy body disease

Alzheimer’s Australia ( publishes ten terrific two-page “help sheets” on the topic of Lewy body disease.  So many people use the term “Lewy body disease” incorrectly but not this organization.

They say:

“Lewy body disease includes three overlapping disorders:
•    Dementia with Lewy bodies
•    Parkinson’s disease
•    Parkinson’s disease dementia
This overlap results in the disease being called a spectrum disease.”

And they say:

“Naming within the spectrum can lead to confusion.
•    Lewy body disease is the ‘umbrella’ term signifying there is underlying alphasynuclein deposits in the brain.
•    Parkinson’s disease is usually diagnosed when a person develops significant movement symptoms first.
•    Parkinson’s disease dementia is diagnosed when a person with established Parkinson’s disease subsequently develops significant cognitive impairment.
•    Dementia with Lewy bodies is usually diagnosed when a person develops significant cognitive symptoms first.
•    Lewy body dementia refers to the cognitive changes typically seen across the spectrum of disorders.”

There are ten fact sheets available from Alzheimer’s Australia:
* Lewy body disease (an overview)
* Cognitive changes in Lewy body disease
* Neuropsychiatric changes in Lewy body disease
* Motor changes in Lewy body disease
* Autonomic changes in Lewy body disease
* Information for family and friends
* Information for home and community care workers
* Information for day placement workers
* Information for acute care workers
* Information for care facilities

Here’s a link to the list of ten fact sheets:

Lewy Body Disease Help Sheets
Alzheimer’s Australia

In looking over the ten fact sheets, I think the five that are information for others, such as family/friends, home care workers, etc. are the best.

Here’s a link to the “Information for Family and Friends” help sheet:

Let me know what you think!


“Pressed Into Caregiving Sooner Than Expected” (about adult children caregivers)

This article in today’s New York Times is about adult children in their 30s or 40s becoming caregivers to their parents or older relatives.  This article will be of most interest to adult children or those who have adult children.

Here are some excerpts:

* “Beyond the challenges that caregiving brings at any age, these people face particular disruptions.  Among the youngest group, ‘what particularly concerns them is the negative impact on their pursuit of education.’  Caregivers closer to midlife contend with pressures at work and sometimes have to reduce their hours, refuse promotions or retire early. In turn, job loss increases current and future financial strains. Younger caregivers may also have children at home.”

* “Perhaps the most jarring aspect of off-time caregiving, though, is the sense of becoming entirely out of sync with one’s peers. ‘We are so isolated,’ [said one caregiver.] ‘You don’t have contemporaries to confide in.'”

* “‘One way to discharge anger and reduce stress is to be able to talk about it,’ [psychologist] Dr. Cohen said. She worries about younger caregivers’ physical and mental health if they feel unsupported and too overwhelmed to take care of themselves.”

* Consider joining “supportive programs specifically for younger people providing elder care….possibly using social media,” such as Facebook and Twitter.

* “Not one of these caregivers regrets undertaking the role. As Joseph Gaugler, a gerontologist at the University of Minnesota School of Nursing, points out, many caregivers take satisfaction in reciprocating their parents’ sacrifices and pride in doing a good job.”

I thought these comments by one caregiver were interesting:  “She looked into caregiver support groups, but felt she had little in common with their much older members. ‘It’s different when you’ve had your career, your chance to travel,’ Ms. Carthy said. ‘I wouldn’t be so angry if I were retired and I’d already had the chance to live my life.'”

The Brain Support Network caregiver group has a mix of adult children and spouse caregivers.  We occasionally have siblings or siblings-in-law attend.

Plus, I think occasional resentment over being a caregiver is not confined to adult children.  Certainly spouses feel this too.  Older spouses say that they thought these were going to be the golden years but they don’t seem so golden.  And younger spouses struggle with working and caregiving.

Here’s a link to the article:

Pressed Into Caregiving Sooner Than Expected
The New Old Age: New York Times
by Paula Span
March 10, 2017