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.



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

A new year is under way, a time when people are reflecting on their lives and setting goals aimed at moving closer to long-term aspirations. If you recently experienced the death of a loved one, you may feel grateful just to have survived the first holiday season without them. Focusing on goals and aspirations while your grief still feels so present may seem paradoxical. But doing so is an essential part of your grief work, according to M. Katherine Shear, MD, founder and director of The Center for Complicated Grief at Columbia University.

While each grief process is unique, the loss of someone with whom you have shared a deep emotional and supportive relationship usually causes the most intense grief reaction. Someone who has held you up emotionally when you were in crisis, helped shape your sense of self, and/or encouraged you to reach for your dreams is physically removed from your life forever. So it makes sense that in the acute phase of grief, you may feel as though you have lost your sense of self or feel unsure of your life purpose.

Grief is an expression of love that continues after death. You shouldn’t expect your grief to ever end completely. However, it is possible for your grief to become more integrated; painful emotions occur less frequently and with less intensity, and no longer interfere significantly with work, other relationships, or your experience of positive emotions.

The path to integrated grief requires three interrelated processes:

* Accepting the reality of your loved one’s death
* Finding new meaning or purpose in your life
* Continuing the bond with your deceased

Humans are innately motivated to search for meaning in living. However, if you are overwhelmed by sadness as you struggle to accept the reality of a loved one’s death, it may seem impossible to think about trying to find new meaning in your living without them. But after the first few months following your loved one’s death, if you can spend a short period, on as many days as possible, focused on redefining your goals and reimagining your life purpose, it can offer glimpses of joy—a welcome respite from your sadness. It may help you with acceptance on a deeper level of your loved one’s death. Greater acceptance of the death may help you to reconnect with your deceased loved one in memory. Reconnecting with your loved one may alleviate some of the longing and sadness you feel so you are more free to focus on redefining your goals and reimagining your life purpose.

It is important to have a balanced focus on all three processes. Knowing when and being able to shift your focus from working on acceptance of the death to focusing on future goals, or to reconnecting to your loved one, can be challenging. While many individuals can navigate the path to integrated grief with the support of other loved ones, some people can get stuck along the way. One reason for this is on a societal level, death, dying, and bereavement are still taboo topics. Thus, many individuals aren’t educated about the grief process, particularly about the importance of finding new meaning or purpose in living after the death of a loved one.

Maladaptive thinking, such as the belief one doesn’t deserve to experience the joy that comes with a renewed life purpose after the death of a loved one, can serve as an obstacle, keeping an individual locked in the acute phase of grief. People 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. Thus, they may become fixated on people, situations, and places that remind them of the loved one when they were alive, or avoid circumstances that remind them of the loved one’s death. Both fixation and avoidance serve as obstacles to accepting the reality of the death.

Even though grief is a normal response to the death of a loved one, and finding new meaning is a natural human tendency, the path to integrated grief can be a complicated one. If more than a few months have passed since your loved one died, and you are feeling overwhelmed or recognize your grief is interfering with your day-to-day functioning, it may be beneficial to work with a mental professional who specializes in grief work. They can work with you to help you remove obstacles in your path so you can balance the range of emotions that come with the struggle to accept your loved one’s death, the joy that can emanate from finding new meaning in your living, and the peace that flows from reconnecting with your deceased loved one.

A new year is under way. Will you accept the invitation to allow it to be the beginning of a new life for yourself?

Shear, M. K. (2015). Complicated Grief Treatment: A Handout for Patients, Friends, and Family Members. Columbia Center for Complicated Grief, The Trustees of Columbia University in the City of New York. Retrieved from https://complicatedgrief.columbia.edu/tools-and-resources/

© Copyright 2017 GoodTherapy.org. All rights reserved. Permission to publish granted by Sonya Lott, PhD, therapist in Philadelphia, Pennsylvania