“How to Stay Empathic without Suffering So Much” (Greater Good Science Center)

Someone in our local support group shared this with me as it resonates with her as a caregiver.  Though the article gives examples with students or children, the group member says the article has helped her have a better balance in feeling empathy towards her husband with a neurological disorder.

The article suggests four strategies for staying empathic without suffering or feeling distress:

1. Check in with yourself
2. Question your thoughts and feelings
3. Practice verbalizing your feelings
4. Nurture a concerned, compassionate response

Here are two good excerpts:

* “There is a reason why we all keep using the oxygen mask analogy. It’s critical—not selfish—to check your own mask first (i.e., ‘Do I have what I need to move forward? Have I taken a deep breath and sensed my feet on the ground? Am I calm, composed, and able to respond thoughtfully?’). Otherwise, you may perpetuate feelings of distress and be unable to reach out with genuine empathic concern in the first place.”

* “By regularly questioning your thinking in a structured way, you can begin to shift your perspective, tone down distressful feelings, and ultimately respond more thoughtfully to” others.

Here’s a link to the article:

greatergood.berkeley.edu/article/item/how_to_stay_empathic_without_suffering_so_much

How to Stay Empathic without Suffering So Much
Four steps to a healthier, more helpful, and more sustainable form of empathy.
By Amy L. Eva
May 4, 2017
Greater Good Science Center

If you view the article online, you’ll find a link to an “empathy quiz” and other resources.

“Recommended New Books for Those Who Are Grieving” (WSJ)

This Wall Street Journal article from late April is a review of five books for those who are grieving:

1- “Resilient Grieving,” By Lucy Hone.

The WSJ article says:  “Her metaphor for life after loss is both powerful and apt: Think of it as a scattered jigsaw puzzle, where the pieces of one’s former life have been scattered and now must be reconfigured in a new way.”

2- “Option B: Facing Adversity, Building Resilience and Finding Joy,” By Sheryl Sandberg and Adam Grant

The WSJ article says:  “For all of its helpful advice, the book is a whirlwind journey that at times tries to do too much.”

3- “Guesswork: A Reckoning With Loss,” By Martha Cooley

4- “There Is No Good Card for This: What To Say and Do When Life Is Scary, Awful, and Unfair to People You Love,” By Kelsey Crowe, Ph.D., and Emily McDowell

The WSJ article says:  The authors “offer insights into those awkward times when friends and family freeze, not knowing what to say or how to help in times of loss. … Simply asking how things are going is often a good start.”

5- “On Living,” By Kerry Egan

The WSJ article says:  “The best antidote to suffering is the kindness of another human being, she writes. And one such kindness is to listen with empathy and attention as people relate the stories that gave their lives meaning, or struggle to reframe the regrets and pain that continue to unsettle them.”

Here’s a link to the full article:

www.wsj.com/articles/recommended-new-books-for-those-who-are-grieving-1492999560

Recommended New Books for Those Who Are Grieving
Sheryl Sandberg and other authors offer strategies on how to move forward after suffering a loss
By Diane Cole
Wall Street Journal
April 23, 2017 10:06 p.m. ET

Robin

 

“Spouses and Partners as Family Caregivers” – chapter 8 of “Caregiver Helpbook”

A course called “Powerful Tools for Caregivers” was developed by an organization in Portland.  You can read general info about the self-care education program for family caregivers at powerfultoolsforcaregivers.org.

As part of the course, class participants receive a copy of a book titled “The Caregiver Helpbook.”  Brain Support Network volunteer Denise Dagan is reading the book and will be sharing the highlights, chapter by chapter.  If you’d like far more detail that Denise’s summaries allow as well as access to the book’s terrific worksheets, note that the book is available for purchase in both English and Spanish at powerfultoolsforcaregivers.org.

The title of chapter eight is “Spouses and Partners as Family Caregivers.” This chapter focuses on the role of the well spouse/partner in caregiving.  The main issue for spouses/partners is that “the person with the chronic condition may become less and less ‘the person I fell in love with’ as the disease or chronic condition affects physical appearance, physical abilities, memory or thought processes, personality, and emotional responses.”

Here’s Denise’s short report on chapter eight.

Robin

————————————-

Notes by Denise

The Caregiver Helpbook
Chapter Eight – Spouses and Partners as Family Caregivers

When one partner is significantly healthier than the other, he/she is referred to as the “well-spouse/partner.”  These couples may face unique challenges, such as:

* Experiencing the sudden shift in the relationship and intense grief that accompanies the awareness that the couple’s relationship as they have known it is gone forever.

* Unsettledness due to the emotional rollercoaster of difficult feelings such as anger, guilt, resentment, and loneliness.

* Dealing with feelings of intense sadness at the loss of shared hopes, dreams and activities.

“The person with the chronic condition may become less and less ‘the person I fell in love with’ as the disease or chronic condition affects physical appearance, physical abilities, memory or thought processes, personality, and emotional responses.  Consider:

* The changes in roles and routines that were in place for many years.
* Fear that care needs may become too great for the spouse/partner.
* Anxiety
* Financial concerns
* Loss of any or all of the intimacies that have been a part of the couple’s special relationship.”

When both caregiver and care receiver are very young there may be children or teenagers at home who are affected by care decisions. The well-spouse/partner may have parenting and employment responsibilities, or may be a caregiver for one or both parents/inlaws.  It may be useful to connect with a well spouse support group or seek individual or couples counseling for help in dealing with these complex and difficult challenges.

If you are a well-spouse/partner, ask yourself:
* Am I taking care of my own health needs – taking my medicine, keeping my medical appointments?
* Am I smoking or drinking more than before?
* Am I feeling isolated from friends?
* Have I given up activities I used to enjoy?
* Do I feel like I am ‘losing myself’?
* Do I need to ask for more or different kinds of help?
* Do I feel guilty for wanting to acknowledge my own needs and emotions?
* Am I increasingly irritable or angry?
* Am I having problems eating or sleeping?
* Am I experiencing increased anxiety of depression?
* Does my stress level feel overwhelming?

“Coping with Grief and Loss: Understanding the Grieving Process and Learning to Heal”

I recently discovered HelpGuide.org, a website that focuses on mental, emotional, and social health.  They have quite a few articles about caregiving, grief, and loss.

Here’s a link to their webpage from April 2017 on “Coping with Grief and Loss:  Understanding the Grieving Process and Learning to Heal”:

https://www.helpguide.org/articles/grief/coping-with-grief-and-loss.htm

Synucleinopathy: How Long You Live Depends on Which One You Have

We posted earlier this week about the Mayo Rochester research into lifespan for Parkinson’s Disease, Parkinson’s Disease Dementia, Dementia with Lewy Bodies, and Multiple System Atrophy, as compared to those without these disorders.

This is a good Alzforum explanation of the same research:

www.alzforum.org/news/research-news/synucleinopathy-how-long-you-live-depends-which-one-you-have

Here are a few excerpts from the Alzforum article:

* “Prior studies have reported survival rates for various parkinsonian disorders; however, most of these recruited from hospitals rather than the general population, and none compared α-synucleinopathies side by side.”

* David Irwin, University of Pennsylvania wrote to Alzforum:  “The comparison of survival…highlights the powerful effect of cognitive impairment and dementia to predict a poor prognosis across the PDD/DLB spectrum.  Further, there is limited data on the natural history of MSA, and this paper provides new insight into the relatively rapid progression of this disease.”

* “[Mayo Rochester researcher] Savica said his group has submitted one autopsy study for publication, and will expand on pathology in an upcoming project.”

PREPARE website – another tool for advance care planning

At the recent American Geriatrics Society annual scientific meeting, some interesting research about advance care planning was presented.  Reading about that research led me to a simple website called PREPARE at prepareforyourcare.org.  The founder of this effort is a Rebecca Sudore, MD, UCSF geriatrician and palliative care specialist.

PREPARE addresses five categories as a means to develop a personalized action plan:
* choosing a medical decision maker
* deciding what matters most in life
* choosing flexibility for your decision maker
* telling others about your wishes
* asking doctors the right questions

The website’s text is large, with lots of graphics.  The website “speaks” the content, which is great for those with visual impairments but, fortunately, can be turned off.  The site is available in both English and Spanish.  According to a Medscape article about the site, the language used is at a fifth-grade level.

PREPARE has created easy-to-use advance health care directives for each state.  Here’s a link to the California form:

prepareforyourcare.org/assets/img/PREPARE_Advance_Directive_CA_EN.pdf

If you haven’t made your advance care plans, this is another great tool.

For those interested, Dr. Sudore discusses her research in a blog post and podcast on the GeriPal website:

www.geripal.org/2017/05/rebecca-sudore-on-advance-care-planning.html

Neurological Disorders Playlist? (Dysautonomia Playlist)

Dysautonomia or autonomic dysfunction is a set of symptoms that commonly occurs in multiple system atrophy and, to some extent, Lewy body dementia.  Here’s a playlist of 25 therapeutic music videos/songs from the Dysautonomia Support Network (dysautonomiasupport.org), which posts its blog on The Mighty:

https://themighty.com/2017/03/dysautonomia-songs/

Despite the playlist title — “The Ultimate Dysautonomia Playlist” — I think this is a great playlist for anyone coping with a challenging neurological condition.

Shorter life span in MSA-P, DLB, and PDD compared to PD and controls

This is more research out of the Mayo Rochester Epidemiology Project, looking at 461 people in Olmsted County, MN who were diagnosed with a synucleinopathy with parkinsonism between 1991 and 2010.  Synucleinopathies included were Parkinson’s Disease (PD), dementia with Lewy bodies (DLB), Parkinson’s Disease Dementia (PDD), and multiple system atrophy-parkinsonism (MSA-p).  These were matched with county residents without parkinsonism.

Those with MSA-p died 6 years earlier than others with synucleinopathies, and those with DLB (4 years) or PDD (3.5 years) had a shorter lifespan than normal controls.  And having PD took one year off a person’s lifespan.

Here’s a MedPage Today article about the research:

www.medpagetoday.com/neurology/parkinsonsdisease/65304

Higher Death Risk With All Synucleinopathies
Lowest with Parkinson’s disease, highest for multiple system atrophy with parkinsonism
by Kristin Jenkins
Contributing Writer, MedPage Today
May 15, 2017

(You can view the article once without signing up.  Signing up is free.)

Robin

————————

Updated in July 2017:

The article described above has this citation:

Savica R, Grossardt BR, Bower JH, et al. Survival and causes of death among people with clinically diagnosed synucleinopathies with parkinsonism: a population-based study. [Published online May 15, 2017]. JAMA Neurol. Accessed June 8, 2017.

Recently, Clinical Neurology News published these five questions to test your knowledge of outcomes in synucleinopathies — dementia with Lewy bodies, Parkinson’s disease dementia, multiple system atrophy, and Parkinson’s disease:

www.mdedge.com/clinicalneurologynews/quiz/4815/movement-disorders/outcomes-synucleinopathies-parkinsonism

Most of the questions are about DLB, PDD, and MSA.  The questions are based on the JAMA Neurology article.

 

 

Does cognitive impairment occur in MSA? (Important Mayo Jax paper)

This is a very important paper out of the Mayo Clinic in Jacksonville, looking at 102 patients with autopsy-confirmed multiple system atrophy (MSA).  The lead author, Dr. Koga, is the same lead author is the important “masquerading” article.

This is a paper we’ve been waiting for as it assesses the prevalence and profile of cognitive impairment in MSA.  Many families in our local support group have made this paper possible through brain donation.

Here’s who was included:

“Between 1998 and 2015, 170 patients from the Mayo Clinic brain bank were given a neuropathologic diagnosis of MSA. Of those, 40 patients without any medical records or brain bank questionnaires, 16 patients with only brain bank questionnaires, and 12 patients with medical records evaluated by physicians other than neurologists were excluded from the study. The resulting cohort consisted of 102 patients having medical records with assessments by neurologists or movement disorder specialists.  …. These cases were received from the following sources: CurePSP: Society for PSP | CBD and Related Disorders (n = 65), Mayo Clinic Morris K. Udall Center of Excellence for PD (n = 30), consultation cases (n = 4), Mayo Clinic Jacksonville Alzheimer’s Disease (AD) Research Center (n = 1), State of Florida AD Initiative (n = 1), and Mayo Clinic Jacksonville hospital autopsy case (n = 1).”

I estimate that Brain Support Network was responsible for half of the 65 brain donation cases with the CurePSP “brain bank” as the source.  This means we are responsible for about one-third of the total brains evaluated in the study!  Wow!

(The “consultation cases” might be from The Parkinson’s Institute. I’m not sure.  Brain Support Network assisted in getting these brains analyzed by Mayo Jacksonville.  Otherwise, the tissue would probably be sitting at The PI, never to be evaluated.)

Here’s a description of this group of 102 cases with autopsy-confirmed MSA:

“63 men and 39 women… Median age at symptom onset was 57 years, and median age at death was 65 years. Thirteen patients (13%) had a family history of dementia, and 17 (17%) had a family history of parkinsonism. Of 102 patients, 85 patients (83%) were given an antemortem diagnosis of MSA. The breakdown of the 17 misdiagnosed patients by antemortem diagnosis is as follows: progressive supranuclear palsy (PSP) in 10 (59%), [Parkinson’s Disease] PD in 4 (24%), [dementia with Lewy bodies] DLB in 1 (6%), primary progressive aphasia (PPA) in 1 (6%), and Ménière’s disease in 1 (6%). The clinical MSA phenotypes were MSA-P in 78 patients (76%) and MSA-C in 24 patients (24%). … Four patients (4%) had a concurrent pathologic diagnosis of Alzheimer’s disease. Lewy-related pathology was observed in 10 patients: 6 were brain stem type and 4 were transitional type. Seven patients (7%) had cerebrovascular pathology, and 2 patients (2%) had HpScl. Thirty-five cases (34%) were pathologically subclassified as MSA-SND, 14 cases (14%) were MSA-OPCA, 51 cases (50%) were MSA-mixed, and 2 cases (2%) could not be classified.”

What did these researchers find?  “Of 102 patients, 33 (32%) were documented to have cognitive impairment. Those that received objective testing, deficits primarily in processing speed and attention/executive functions were identified, which suggests a frontal-subcortical pattern of dysfunction. Of these 33 patients with cognitive impairment, 8 patients had concurrent pathologies of dementia….although they were not given antemorten diagnoses of these diseases.”

Those concurrent pathologies of dementia included Alzheimer’s Disease, hippocampal sclerosis, and cerebrovascular pathology. (Based on my reading, none of the 8 patients had diffuse Lewy body disease, or dementia with Lewy bodies.)

Of those 33 patients, 10 were not diagnosed with MSA during life. They were diagnosed with PSP (6), PD (2), DLB (1), and PPA (1).

What is “cognitive impairment” (CI)?  This includes “memory loss, forgetfulness, distractibility, word-finding difficulty, difficulty with naming, slowed thinking/bradyphrenia, and executive dysfunction.”  Cognitive impairment is a step below dementia. However, 8 out of the 102 cases also had dementia that was confirmed through autopsy.

When did the cognitive impairment (CI) begin in those 33 cases? “The median duration between age of symptom onset and age at onset of CI was 2 years… Only 3 patients (9%) initially presented with CI and motor symptoms simultaneously. One patient developed CI preceding motor symptoms by 1 year.”

How do those with cognitive impairment (MSA-CI) compare to those without (MSA-NC)?  “MSA-CI had an older age at onset and death than did MSA-NC… Median disease duration was 7 years in both groups. The proportion of women and the frequency of family history of dementia and parkinsonism did not differ between the 2 groups. The frequency of having a clinical diagnosis of MSA was significantly lower in MSA-CI compared with MSA-NC. … The proportion of clinical MSA phenotypes did not differ between MSA-CI and MSA-NC. Patients with MSA-CI more frequently had depression compared with those with MSA-NC, although this did not reach statistical significance.”

For many of you, the key question will be “can dementia occur in MSA?”  For me, the answer is no since dementia is not caused by MSA pathology.  Of course, you can have a dementing disorder along with MSA, though this is unusual (8 out of 102 cases).  However, cognitive impairment can certainly occur in MSA.  In this study, about one-third of those evaluated had cognitive impairment while alive.  Clearly clinicians need to keep this in mind and not exclude those with cognitive impairment from an MSA diagnosis.

The full paper is available at no charge online here:

onlinelibrary.wiley.com/doi/10.1002/mds.26874/full

I’ve copied the abstract below.

Robin

———————

Profile of cognitive impairment and underlying pathology in multiple system atrophy

Shunsuke Koga MD, PhD, Adam Parks PhD, Ryan J. Uitti MD, Jay A. van Gerpen MD, William P. Cheshire MD, Zbigniew K. Wszolek MD, Dennis W. Dickson MD

Movement Disorders Journal, Volume 32, Issue 3, March 2017, Pages 405–413
First published online: 15 November 2016

ABSTRACT

Background
The objectives of this study were to elucidate any potential association between α-synuclein pathology and cognitive impairment and to determine the profile of cognitive impairment in multiple system atrophy (MSA) patients. To do this, we analyzed the clinical and pathologic features in autopsy-confirmed MSA patients.

Methods
We retrospectively reviewed medical records, including neuropsychological test data, in 102 patients with autopsy-confirmed MSA in the Mayo Clinic brain bank. The burden of glial cytoplasmic inclusions and neuronal cytoplasmic inclusions were semiquantitatively scored in the limbic regions and middle frontal gyrus. We also assessed concurrent pathologies potentially causing dementia including Alzheimer’s disease, hippocampal sclerosis, and cerebrovascular pathology.

Results
Of 102 patients, 33 (32%) were documented to have cognitive impairment. Those that received objective testing, deficits primarily in processing speed and attention/executive functions were identified, which suggests a frontal-subcortical pattern of dysfunction. Of these 33 patients with cognitive impairment, 8 patients had concurrent pathologies of dementia. MSA patients with cognitive impairment had a greater burden of neuronal cytoplasmic inclusions in the dentate gyrus than patients without cognitive impairment, both including and excluding patients with concurrent pathologies of dementia.

Conclusions
The cognitive deficits observed in this study were more evident on neuropsychological assessment than with cognitive screens. Based on these findings, we recommend that clinicians consider more in-depth neuropsychological assessments if patients with MSA present with cognitive complaints. Although we did not identify the correlation between cognitive deficits and responsible neuroanatomical regions, a greater burden of neuronal cytoplasmic inclusions in the limbic regions was associated with cognitive impairment in MSA.

© 2016 International Parkinson and Movement Disorder Society