Interview with Ambiguous Loss Expert Pauline Boss

On Being (onbeing.org) is a public radio show that “opens up the animating questions at the center of human life.” The host is Krista Tippett. Last summer, Ms. Tippett interviewed family therapist Pauline Boss. The “animating question” must’ve been about ambiguous loss or grief. Dr. Boss is an expert is “ambiguous loss.” Her books include “Loss, Trauma, and Resilience,” “Loving Someone Who Has Dementia,” and “Ambiguous Loss.”

Here’s a description of the interview:

“There is no such thing as closure. Family therapist Pauline Boss says that the idea of closure in fact leads us astray — it’s a myth we need to put aside, like the idea we’ve accepted that grief has five linear stages and we come out the other side done with it. She coined the term ‘ambiguous loss,’ creating a new field in family therapy and psychology. And she has wisdom for the complicated griefs and losses in all of our lives and in how we best approach the losses of others — including those very much in our public midst right now.”

You can listen to the 50-minute conversation here:

The Myth of Closure: Interview with Pauline Boss
On Being
by Krista Tippet, host
June 23, 2016


www.onbeing.org/programs/pauline-boss-the-myth-of-closure/

Brain Support Network volunteer Denise Dagan listened to the full recording and said this:

“This is a really lovely 50-minute interview with Dr. Pauline Boss, Professor Emeritus at the University of Minnesota. It is apropos for everyone, but particularly for those of us living with long-term-illness, especially when dementia is a factor.”

For those who would like a faster approach, the transcript is at the link above.

Robin

Podcast on brain atrophy in PSP and CBS with Dr. Boxer

The journal Neurology hosts weekly podcasts with neurologists around the world. In this podcast from November 8, 2016, Adam Boxer, MD, neurologist at UCSF’s Memory & Aging Center, discusses brain atrophy in progressive supranuclear palsy (PSP) and corticobasal syndrome (CBS). The interview with Dr. Boxer is the first ten minutes of the podcast.

Brain Support Network Treasurer Phil Myers listened to the podcast and found it interesting.  He says Dr. Boxer discusses “using MRI measurements to speed up the time it takes to do a clinical trial for PSP or CBS potential drug trials.”

You can find the podcast here:

tools.aan.com/rss/index.cfm/getfile/AAN_3192.mp3

Neurology Podcast on brain atrophy in PSP and CBS
Neurology Journal
November 8, 2016

Robin

About 10% of patients diagnosed with PAF evolve to MSA, etc.

This is a study out of Mayo Rochester.  They looked at 318 patients diagnosed in a ten year period with possible Pure Autonomic Failure (PAF).  41 were identified with stable PAF, meaning they had PAF for three years or more with no development of another neurological disease.  37 (or 12%) had “converted” to a neurological disease — mostly Multiple System Atrophy (MSA) and some Parkinson’s Disease (PD) or Dementia with Lewy Bodies (DLB).

The authors state:  “Several variables were identified to predict conversion to MSA: (1) mild degree of cardiovagal impairment, (2) preganglionic pattern of sweat loss, (3) severe bladder dysfunction, (4) supine norepinephrine >100 pg/mL, and (5) subtle motor signs at first presentation.”

The abstract is copied below.

We have had a few people in our local support group who were originally diagnosed with PAF and later diagnosed with MSA.

Robin

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Neurology. 2017 Feb 15.  [Epub ahead of print] Pure autonomic failure: Predictors of conversion to clinical CNS involvement.
Singer W, Berini SE, Sandroni P, Fealey RD, Coon EA, Suarez MD, Benarroch EE, Low PA.

Abstract

OBJECTIVE:
Based on the observation that a subset of patients originally diagnosed with pure autonomic failure (PAF) eventually develops extrapyramidal or cerebellar involvement consistent with multiple system atrophy (MSA), Parkinson disease (PD), or dementia with Lewy bodies (DLB), we aimed to identify predictors of progression of PAF to more sinister synucleinopathies.

METHODS:
In this retrospective cohort study, we reviewed patients seen at Mayo Clinic Rochester by autonomic specialists between 2001 and 2011 and during initial evaluation diagnosed with orthostatic hypotension consistent with PAF (possible PAF). In order to assess for the presence or absence of progression, we identified patients with 3 years or more of in-person follow-up (stable PAF) or documented progression to another synucleinopathy (converters). To identify predictors of conversion, we assessed odds of conversion based on clinical, autonomic, and laboratory variables.

RESULTS:
Among 318 patients fulfilling criteria for possible PAF, we identified 41 with stable PAF and 37 (12%) converters. Of those who evolved, 22 developed MSA, 11 developed PD/DLB, and 4 remained indeterminate. Several variables were identified to predict conversion to MSA: (1) mild degree of cardiovagal impairment, (2) preganglionic pattern of sweat loss, (3) severe bladder dysfunction, (4) supine norepinephrine >100 pg/mL, and (5) subtle motor signs at first presentation. Separate variables were found to predict conversion to PD/DLB. Composite conversion scores were generated based on individual predictors.

CONCLUSIONS:
Over 10% of patients originally diagnosed with PAF eventually evolve to develop CNS involvement, most commonly MSA. A combination of variables allows for prediction of conversion.

© 2017 American Academy of Neurology.

PubMed ID#: 28202694  (see pubmed.gov for the abstract)

NextStepInCare.org – useful website for care transitions

The “Next Step in Care” website, nextstepincare.org, has been mentioned in many newspaper articles and by many speakers as a good resource.  The site, a program of United Hospital Fund, was “created to make sure transitions in care – moving patients from one setting to another – are safe and smooth because chronically ill patients move frequently between health care settings, and these transitions should be carefully planned and coordinated.”  Adding in-home care is viewed as a “transition in care.”  The site provides guides and checklists for family caregivers and healthcare professionals.

Recently, Brain Support Network volunteer Denise Dagan took a look at the website.  Here’s what she had to say about it.

Robin

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Notes about
Next Step in Care (nextstepincare.org)

According to the website:  “Family caregivers are essential to successful transitions, yet they are often left out of planning and poorly prepared to take on new, complex, and demanding tasks and responsibilities.  Next Step in Care provides practical advice and easy-to-use guides that focus on transitions between hospitals, rehabilitation facilities, nursing homes and home to improve transfer quality and safety, and reduce unnecessary re-hospitalizations.”

I heard a rule of thumb recently from a Stanford doctor who said if a person is readmitted to the hospital within 30 days, that transition to home is considered unsuccessful in his mind.  It could have been better planned and executed.  A properly planned and executed health care transition is less stressful for everybody.  Next Step in Care is wise enough to know that hinges on the family having access to relevant information.

Here are the great things on this website, nextstepincare.org:

1.  You can search the type of transition your family will be dealing with and find Family Caregiver Guides with relevant information.  By the time you read through the recommended Guides for that type of transition, you will be better prepared to participate in the process.

2.  The Family Caregivers Guides are also easy to find from a well organized index.  The index and the Guides are available in English, Spanish, Chinese, and Russian, with text size adjustment!  You can print, email and save to your computer every Guide on the website.  Share them with everyone on your caregiving team, so everyone is better prepared.

3.  The Family Caregiver Guides cover all relevant transition care topics, even LGBT Caregiving.

4.  There is a Video section with instruction for these common caregiving situations:  Medication Management (including Giving Insulin Injections), Dementia & Delirium, and Palliative Care.

– Denise

“How delirium can be different than dementia” (Toronto Star)

Here’s a good article in the Toronto Star newspaper about delirium.  Key points in the article include:

* “Delirium can be a symptom of a chronic illness or metabolic imbalance.”

* “The signs and symptoms of a delirium mimic dementia symptoms, so your role (as a family member) is critical in explaining the individual’s baseline function” when you are in the hospital.

* “[Having] dementia, Parkinson’s disease or suffering a stroke can predispose you to delirium, as can being elderly, or having had an incident of delirium in the past.”

* “It can have a particularly negative impact on a vulnerable brain, impairing the brain’s ability to receive or send out signals.”

* “Some common triggers for delirium include fever, acute infection (like a flu), urinary tract infection, a toxin, sleep deprivation, or anesthesia. Certain drugs for asthma, Parkinson’s, pain and low oxygen can also be culprits.”

Here’s a link to the article:

www.thestar.com/life/health_wellness/nutrition/2017/02/13/how-delirium-can-be-different-than-dementia-caregiver-sos.html

How delirium can be different than dementia: Caregiver SOS
Delirium can happen to those who suffer from dementia, but it can also indicate other medical issues.
By Nira Rittenberg
Toronto Star
Mon., Feb. 13, 2017

Robin