Positive and negative aspects of caregiving, etc.

Brain Support Network is affiliated with The Association of Frontotemporal Degeneration (theaftd.org), since progressive supranuclear palsy (PSP) and corticobasal syndrome (CBS) are consider movement disorder types of frontotemporal degeneration (FTD).  The AFTD hosted a webinar in early February for support group leaders.  I wish the audience had been all caregivers because the speaker was terrific and he addressed caregiving in America as well as the positive and negative aspects of caregiving.  Not much of his talk was specific to the FTD disorders.

The speaker was psychologist Barry Jacobs, PsyD.  He authored a book for the AARP on “Meditations for Caregiving.”  It was obvious he prepared for the webinar even though the audience was small.

Dr. Jacobs pointed to this quotation from David Coon, a researcher:  “The majority of caregivers….readily endorse caregiving gains or positive aspects of caregiving [including] having the opportunity to serve as a role model, having the chance to give back to care recipients… experiencing an enhanced sense of purpose… feeling appreciated, and helping to maintain the identify and well-being of the family.”

Here are my notes.



Webinar:  Support for FTD Caregivers
February 2, 2017

Speaker:  Barry Jacobs, PsyD
author of AARP Meditations for Caregiving

Host:  The Association for Frontotemporal Degeneration

Topics to address:
* Caregiving in America – what we know from research
* Positive and negative aspects of caregiving
* Support group goals and methods

Caregiving can bring families together but can divide them (especially if the caregiving goes on for decades).

40 million caregivers engage in some form of caregiving in a year
Majority are doing small things
Numbers are increasing because of demographics and medical advances

60% women, 40% men
one-quarter millennials, one-quarter Gen-Xers
Average:  49YO woman caring for her mother (?) and her children; sandwich generation; still working at least part-time; caring for at least 4 years

NASEM Report (fall 2016)
18 million caring for adults over 65
median length of time for caregiving – 5 years
demographic shifts will lead to shrinking pool of available family caregivers as we age

AARP website – Caregiver support ratio
In 2010:  7 potential caregivers for every person
In 2030:  4 potential caregivers
In 2050:  3 potential caregivers
So the caregiving load will be more intense and severe for families

Family Caregivers’ Healthcare Roles (Wolff, Jacobs, 2015) – most caregivers have no training in any of these roles:
technical interpreter
patient ombudsman
case manager
healthcare provider

Highly varied reactions to caregiving (NAC/AARP, 2015):
* 38% highly stressed
* 45% somewhat stressed
* 16% not at all stressed

More than 5 million Alzheimer’s patients today.  By 2050, 11.5-16 million.  70% cared for at home.

50K FTD patients in the US now.  Expected to grow as well.  Most cared for at home.

Average life-span of dementia patient at time of diagnosis: 6-7 years
Most common answer caregivers give when asked (at patient’s diagnosis) how long they think they’ll have to give care: 2 years
Big discrepancy!  Marathon care, not sprint care.  Many caregivers sacrifice work and hobbies early on.  Caregivers at risk of burning out as they haven’t paced themselves.  Especially dementia caregivers as dementia is slow-moving.

Research on caregiving’s negative effects:
* Dementia caregiving linked with 63% increased mortality as compared to non-caregivers (Schulz & Beach, JAMA, 1999).
* Schulz & Martire, 2004.
* Caregivers suffer cascade of consequences.  Often insomnia, chronic sleep deprivation, depression and anxiety, musculoskeletal problems (neck and back pain), decreased use of preventative medical services.

Bill Clinton provided funds for family caregivers to those over age 50…through area agency on aging.

“Still Alice” movie, 2014.  Family shuffled.

Potential positive effects of caregiving:
* Roth et al (2013) studied over 3500 caregivers and found that, rather than suffering increased mortality, they had “18% reduced rate of death compared to non-caregivers”
* Other caregivers report that they grow personally and spiritually as a result of caregiving

“The Savages” movie, 2007.  Shows positive effects of caregiving.

Lonnie Ali quotations:
* “Adversity can make you stronger.”
* “When I wake up, I make the decision to speak in a joyous voice, to nurture positive energy, and to make this a good day.”
* “[The disease] is not something to be afraid of; the more you know, the more empowered you become.”
* “[God] put me here for a reason.”

David Coon, researcher on caregivers at ASU:  “The majority of caregivers….readily endorse caregiving gains or positive aspects of caregiving [including] having the opportunity to serve as a role model, having the chance to give back to care recipients… experiencing an enhanced sense of purpose…feeling appreciated, and helping to maintain the identify and well-being of the family”

Questions he wonders about:
* why do different people have different experiences?
* different types of caregiving?
* different relationships?
* different coping mechanisms?
* how do we help caregivers minimize the strains and maximize the gains?

PSP Overview – Video Interview with Dr. Irene Litvan

University of California Television (uctv.tv) produces great videos featuring UC specialists.  In a January 2016 video, neurologist Irene Litvan, MD, is interviewed.  She’s a movement disorder specialist at UCSD and is one of the world’s foremost experts on progressive supranuclear palsy (PSP).  In the 12-minute interview, Dr. Litvan joins Bill Mobley, MD, PhD to discuss the signs and symptoms of PSP, disease progression, genetic issues, along with potential treatments on the horizon.  This is part of UCTV’s “Women in Science” series.  I read about it on a Facebook group.  See:


This is well worth watching.


“The bad news: I don’t have Parkinson’s”

Last week in the Birmingham News, a journalist named Mike Oliver revealed that he was recently given a diagnosis of Lewy Body Dementia (LBD).  He had previously written in September 2016 that his diagnosis was Parkinson’s Disease.  But new symptoms pointed to LBD.

Mike uses the term “Lewy body disease” and describes the condition as being “like Parkinson’s and Alzheimer’s combined.”
He says:

“The disease works and presents like Parkinson’s. In both cases, these proteins kill neurons. It’s just that with Lewy body disease the proteins are killing neurons over a wider swath of the brain. … The big difference is that with Lewy body disease, the dementia comes early, sometimes before any movement disorders are noticed. With Lewy body disease, dementia is often accompanied by hallucinations and REM behavior disorder, which cause people to physically act out their dreams, hitting, kicking or talking.”

Here’s a link to the full article:


The bad news: I don’t have Parkinson’s.
Birmingham News
By Mike Oliver | [email protected]
on February 20, 2017 at 12:04 PM



7-minute video about PSP

This seven-minute youtube video is called “Progressive Supranuclear Palsy (PSP) Final Project.”  It seems to be a psychology class project for a group of five UK students (who are not native English speakers).  The video was posted to YouTube on May 14, 2015.  See:


I thought it was worth watching and might make a good introduction to friends and family members of someone newly-diagnosed.  I read about this on a PSP Facebook group (with mostly UK residents).  Someone posted that they had provided the video to the nursing home staff where their family member with PSP lives.


“Finding New Meaning in Your Living After a Loved One Dies”

In this article posted to GoodTherapy.org, psychologist Sonya Lott, PhD notes that those who have lost loved ones are “sometimes unable to focus on new goals or life purpose because they fear accepting their loved one’s death and ‘moving on’ means they will or must ‘forget about’ their loved one.”  Dr. Lott provides a strategy for integrating grief into your life.

Check out the article here:

Finding New Meaning in Your Living After a Loved One Dies
By Sonya Lott, PhD, GoodTherapy.org Topic Expert
January 26, 2017