“How to have a better death” and “A better way to care for the dying” (Economist)

There are two Interesting articles in today’s Economist magazine (economist.com) that report on the “huge gap between what people want from end-of-life care and what they are likely.”  This gap was found in a survey done by The Economist in partnership with the Kaiser Family Foundation.  For the survey, people in the US, Brazil, Italy and Japan were asked a set of questions about dying and end-of-life care.

Here’s a link to the first article, which is actually a short editorial by the magazine:


End-of-life care
How to have a better death
Death is inevitable. A bad death is not
Economist, Print edition
Apr 29th 2017

It cites two statistics:

* Nearly a third of Americans who die after 65 will have spent time in an intensive-care unit in their final three months of life.

* Almost a fifth undergo surgery in their last month.

Here’s a link to the second article:


End-of-life care
A better way to care for the dying
How the medical profession is starting to move beyond fighting death to easing it
Economist International Edition
Apr 29th 2017

The second article, titled “A better way to care for the dying,” addresses what Atul Gawande, MD, calls “the experiment of making mortality a medical experience.”  It cites a few statistics:

* People in rich countries can spend eight to ten years seriously ill at the end of life.

* Many deaths are preceded by a surge of treatment, often pointless.  Nearly a third of elderly Americans undergo surgery during their final year; 8% do so in their last week.

* By 2020, 40% of Americans are expected to die alone in nursing homes.

* One international review of prognoses of patients who die within two months suggests that seriously ill people live on average little more than half as long as their doctors suggested they would. Another study found that, for patients who died within four weeks of receiving a prognosis, doctors had predicted the date to within a week in just a quarter of cases. Mostly, they had erred on the side of optimism.

* Remarkably, in three trials the patients receiving palliative care lived longer, even though the quantity of conventional treatment they opted to receive was lower.

* In one study just 43% of people who had written living wills wanted the same treatment course two years later.

Both articles are worth reading.

Serious Illness Conversation Guide and Family Communication Guide

There are two Interesting articles in today’s Economist magazine about dying and having a good death.  (I will post separately about those articles.)  The articles mention this resource:

Serious Illness Conversation Guide
by Ariadne Labs (founded by Atul Gawande, MD)

The Guide is a one-page checklist for clinicians to find out what a terminally ill patient understands about his/her condition and prognosis.  It’s also a way for the clinician to learn what the patient’s goals are.  You can find the one-page guide for clinicians here:


The Guide for physicians refers to the “Family Communication Guide.”  You can find this short guide here:


This might be a useful resource to generate family discussion when someone has a neurological diagnosis.  “This booklet can help you talk with your loved ones about your illness and the future,” according to the guide.

A protein called PERK may be a target for PSP, CBD, and other tauopathies

Brain Support Network will very likely be hosting and organizing a PSP/CBD conference in San Francisco in October.  (Stay tuned….) One of the international researchers we’ll be inviting to speak is Gunter Hoglinger from Munich.  He’s been involved in PSP and CBD genetics research for at least a decade.  Very impressive guy.

I was looking up a bit about Dr. Hoglinger online and came across this Science Daily article based on a press release from early February 2017 about research published by him and the German Center for Neurodegenerative Diseases (DZNE).  This is basic research using donated brain tissue, cell cultures, and mice.  This basic research can be the basis of good clinical trials down the road.

Here’s an excerpt from the Science Daily article:

“In previous studies, Höglinger and his colleagues had found that the risk for PSP is associated with variants at the PERK [protein kinase RNA-like endoplasmic reticulum kinase] gene, and that loss of PERK function induces tau pathology in humans. For the current study, they examined the functioning of this protein more closely, to see how its effects could be positively influenced. To this end, they investigated samples of brain tissue from deceased patients, cell cultures and mice with a genetic disposition for PSP.  ‘We found that the disease sequelae decrease when PERK is activated with pharmaceuticals,’ [Hoglinger said.]  ‘Therefore, the protein could be a starting point for the development of new drugs.'”

The short article is copied below.




Science News
A protein called PERK may be a target for treating progressive supranuclear palsy
Acting upon the maintenance system of neurons alleviates disease sequelae in laboratory experiments

Date:  February 6, 2017
Source:  DZNE – German Center for Neurodegenerative Diseases

The brain disease ‘progressive supranuclear palsy’ (PSP) is currently incurable and its symptoms can only be eased to a very limited degree. PSP impairs eye movements, locomotion, balance control, and speech. Scientists have now discovered a molecular mechanism that may help in the search for effective treatments.

The brain disease “progressive supranuclear palsy” (PSP) is currently incurable and its symptoms can only be eased to a very limited degree. PSP impairs eye movements, locomotion, balance control, and speech. Scientists at the German Center for Neurodegenerative Diseases (DZNE) and the Technical University of Munich (TUM) have now discovered a molecular mechanism that may help in the search for effective treatments. Their study focusses on a protein called PERK (protein kinase RNA-like endoplasmic reticulum kinase). A team of researchers led by Prof. Günter Höglinger reports on this in the journal EMBO Molecular Medicine.

PSP belongs to a group of neurological diseases referred to as “tauopathies.” In these diseases, a molecule called “tau” forms clumps rather than stabilizing the cytoskeleton as it normally does. Affected neurons can degenerate or even perish. To prevent such events, pathological molecules are normally repaired or disposed of by the organism. The protein PERK is part of such a maintenance system. However, in PSP, this mechanism appears to be defective. In previous studies, Höglinger and his colleagues had found that the risk for PSP is associated with variants at the PERK gene, and that loss of PERK function induces tau pathology in humans. For the current study, they examined the functioning of this protein more closely, to see how its effects could be positively influenced. To this end, they investigated samples of brain tissue from deceased patients, cell cultures and mice with a genetic disposition for PSP.

“We found that the disease sequelae decrease when PERK is activated with pharmaceuticals. That is to say: when its effect is enhanced,” says Höglinger, who leads a research group at the DZNE’s Munich site. “These results are still basic research and far from being ready for use in patients. However, our investigations show that PERK is an important part of the disease mechanism. Therefore, the protein could be a starting point for the development of new drugs.”

Höglinger also sees potential for tackling diseases other than PSP. This is because PERK helps eliminate abnormal tau molecules, and these also occur in other brain diseases. “These results could have a broad relevance. Because defective tau molecules play an important role especially in Alzheimer’s disease,” the researcher says.

Journal Reference:
Julius Bruch, Hong Xu, Thomas W Rösler, Anderson De Andrade, Peer‐Hendrik Kuhn, Stefan F Lichtenthaler, Thomas Arzberger, Konstanze F Winklhofer, Ulrich Müller, Günter U Höglinger. PERK activation mitigates tau pathology in vitro and in vivo. EMBO Molecular Medicine, 2017; e201606664 DOI: 10.15252/emmm.201606664

Webinar on Sleep Issues in Parkinson’s, May 18, 9-10am (CA time)

May’s Third Thursday Michael J. Fox Foundation (michaeljfox.org) webinar on sleep issues in Parkinson’s might be of interest to those dealing with Lewy Body Dementia and Multiple System Atrophy as REM sleep behavior disorder (RBD) is a problem in all three disorders.  The webinar (no charge) is on Thursday, May 18, 9-10am California time.  You can register in advance to participate or register afterward in order to view the recording.  Details are below.

“Sleeping Well with Parkinson’s”

Program:  Sleep disturbances are a common non-motor symptom of Parkinson’s disease that may cause difficulty falling or staying asleep. In this webinar, we’ll discuss sleep disorders that can occur in Parkinson’s, how to manage them and current research on sleep and PD.

Presenters to be announced at the time of the program

Hosted by: The Michael J. Fox Foundation for Parkinson’s Research

Register by clicking on the REGISTER NOW button at:

Ten warning signs of caregiver stress

This webpage from BrightFocus Foundation (brightfocus.org), an organization addressing Alzheimer’s Disease, has a list of ten warning signs of caregiver stress:
* Denial
* Anxiety
* Depression
* Irritability
* Anger
* Poor concentration
* Withdrawal
* Sleep problems
* Exhaustion
* Illness

How many do you have?!




Tips & How-Tos
Learn the Warning Signs of Caregiver Stress
Thursday, June 18, 2015
BrightFocus Foundation

Caring for someone with Alzheimer’s disease is an enormous responsibility. Learn how you can watch for the warning signs of caregiver stress and what you can do to help cope with being a caregiver.

There’s an estimated of 60-70 percent of people with Alzheimer’s disease and other forms of Dementia who are cared for in their homes, often by loved ones who are not medically trained. It’s no wonder that caregivers of people with Alzheimer’s disease suffer high levels of stress.

As the disease progresses, your caregiving efforts will require ongoing vigilance and around-the-clock monitoring. You may be called upon to adapt to changes in the person you are caring for and develop new skills to shoulder an increasing amount of responsibility. If your caregiving efforts are surpassing your ability to cope well, it may be because of stress.

What Are the Warning Signs of Stress
Here are some warning signs of stress that a caregiver may experience:
* Denial: Maintaining a belief that the care receiver’s illness is not serious or that it may not even exist.
* Anxiety: Worrying excessively about the future.
* Depression: Feeling hopeless or powerless about the situation.
* Irritability: Blowing up over little things.
* Anger: Feeling angry at inappropriate times.
* Poor concentration: Having difficulty focusing.
* Withdrawal: Feeling alienated from other people and from activities that used to bring enjoyment.
* Sleep problems: Sleeping poorly or too much.
* Exhaustion: Feeling chronically tired.
* Illness: Experiencing health problems. Prolonged stress also can contribute to illnesses such as weakened immune systems, high-blood pressure, and heart disease.

This content was last updated on: Thursday, June 18, 2015

“Caregiver Stress and Burnout: Tips for Regaining Your Energy, Optimism, and Hope”

HelpGuide.org is a Southern California-based non-profit focused on mental, emotional, and social health.  Back in 2012, they published a webpage on “Caregiver Stress and Burnout,” which was recently updated.

The webpage, part of their articles about stress, offers this advice:

“Don’t let caregiving take over your whole life. It’s easier to accept a difficult situation when there are other areas of your life that are rewarding. Invest in things that give you meaning and purpose—whether it’s your family, church, a favorite hobby, or your career.”

Check out all of their advice here:


Caregiver Stress and Burnout
Tips for Regaining Your Energy, Optimism, and Hope
Last Updated April 2017



Report on health brain aging summit; pathology explains only 40% of cognitive decline

Earlier in April, the National Institute on Aging (NIA) held a summit on healthy brain aging, focusing on cognitive reserve and resilience.  “The idea is that cognitive reserve helps the brain preserve cognition in the face of ongoing pathology, and if scientists better understand the processes involved, maybe they can boost reserve.”  One thing holding researchers back is that there isn’t a good definition of “cognitive reserve.”  One researcher proposed that “reserve modulates the effect of injury on cognition, such that for a given degree of pathology, people with more reserve show less cognitive decline.”  Similarly, there is no definition for “resilience” or “compensation.”

Alzforum has an interesting report on the NIA conference.  The report is a good reminder that pathology in the brain is not the whole story.  According to one research at Rush, neuropathology explained “only 40 percent of the cognitive decline.”

Here are some excerpts:

“Scientists generally accept that education and intellectual enrichment contribute to cognitive reserve, and that people with a lot of it live dementia-free longer. Beyond that, the concept remains something of a black box.”

“What can researchers glean from studying people, notably the lucky few who make it into their 80s and 90s with crystal-clear memories? Some of these spry minds have advanced pathology in their brains, while others harbor genetic risk factors for cognitive decline.  Data from the 90-plus study…suggest that at very old ages, the amount of amyloid in the brain has little bearing on how fast people decline cognitively in the years before death. In fact, the eight highest performers on memory tests who have come to autopsy had a wide range of pathology, ranging from little to full-blown plaques and tangles. This adds to evidence that a low pathology burden doesn’t explain better memory in older people, [the UC Irvine researcher] concluded. In support of that idea, Patricia Boyle, Rush University Medical Center, Chicago, analyzed 1,200 autopsied brains from the Rush Memory and Aging Project and found brain pathology explained only 40 percent of cognitive decline. That leaves 60 percent of total impairment unexplained, she said.”

“One possibility comes from the lab of Emily Rogalski, Northwestern University, Chicago. Her data suggest that atrophy, or the lack thereof, may play a role in resilience to age-related memory loss. She reported in the April 4 JAMA that the cortices in a cohort of 24 superagers—people over 80 with episodic memory scores typical of middle age—shrank at half the rate of the average 80-year-old.”

“Scientists led by Adam Gazzaley, University of California, San Francisco, have been creating games to improve cognition. How can they tell if those games have lasting benefits over time that generalize to daily activities? … He described efforts to construct double-blind trials using ‘placebo’ games. These games are designed to seem beneficial to participants, without actually exercising the cognitive domains being tested.”

The full Alzforum blog post can be found here:



“Why Many People Abandon Friends and Family” (Wall Street Journal)

Though this article is titled “Why Many People Abandon Friends and Family with Dementia–and Shouldn’t,” I think the concepts apply to those with any neurological disorder, not just dementia. Many with neurological disorders are abandoned by their friends and family.  (Or maybe I should say they are abandoned by their supposed friends and family.)

This blog post from a recent Wall Street Journal (wsj.com) is authored by Marc Agronin, MD, a geriatric psychiatrist in Miami.  He says that there’s “a lot that can be done to break negative and avoidant behaviors that impede the care and quality of life for individuals with various forms of dementia.”

Dr. Agronin suggests five basic strategies “to banish the fear and avoidance of individuals with dementia and their caregivers.”  These approaches “can make all the difference by helping them to have greater dignity, well-being and quality of life.”  The five strategies include:

1. Educate yourself about this disease.
2. Recognize the strengths that still exist.
3. Lend a hand [to the person with a disorder and their caregiver].
4. Offer some relief [to the caregiver].
5. Become an advocate for…disease awareness, early detection and research.

Here’s a link to the full article:


The Experts/Retirement
Why Many People Abandon Friends and Family with Dementia–and Shouldn’t
By Marc Agronin
Apr 23, 2017 10:01 pm ET
Wall Street Journal



Six tips on coping with inappropriate dementia behavior; saying “I’m sorry”

The Capital Gazette newspaper has a column written by Mary Chaput of the Department of Aging and Disabilities of Annapolis, MD.  A recent column had a question about frontotemporal dementia.  Ms. Chaput’s answer applies to dealing with someone with any type of dementia.

In terms of dealing with inappropriate behavior, she offers six tips:

* Don’t take the behavior or comments personally.
* Be empathetic.
* Don’t argue.
* Look for the situation(s) and environmental factors that trigger the behaviors.
* Talk with your family member’s physician about the behavior.
* Keep in mind that this, too, shall pass.

Another question was about saying “I’m sorry” to placate someone with dementia.

Here’s a link to the full column:


Caregivers Corner: Be patient and empathetic when dealing with frontotemporal dementia
by Mary Chaput, Correspondent
Capital Gazette
April 1, 2017



Mayo Rochester finally reports results from mesenchymal stem cell study in MSA

Finally Mayo Rochester has reported results from its mesenchymal stem cell study of multiple system atrophy.  Local support group member John Yanez-Pastor participated in the study.  This was a phase I/II safety and tolerability study, NOT an efficacy study.  Wolfgang Singer, MD, reported at this week’s annual meeting of the American Academy of Neurology that the 24 probable MSA patients who participated in the very small study reported no serious adverse events with the treatment.

I guess with the phase II aspect of the study, a bit about efficacy could be studied.  Dr. Singer said that the “efficacy of MSCs on slowing multiple system atrophy progression….appeared to be dependent on the dose, and, in the highest dose individuals, had a painful implantation response.”

Slowed disease progression was measured by the Unified MSA Rating Scale.  There was only one point difference between the study group and a “historical placebo group.”  I’m not sure a one point difference really leads to better quality of life.  (Sorry.)  There was no change on on any autonomic scales.

Mayo Rochester is in the late planning stages for a multicenter, double-blind, placebo-controlled phase II/III study.

There’s a four-minute video interview with Dr. Singer here:


And here’s a link to the full article from Clinical Neurology News:


VIDEO: Pilot stem cell trial for multiple system atrophy shows promising results
Publish date: April 25, 2017
By: Jeff Evans, Clinical Neurology News
At AAN 2017