Barry Jacobs weighs in on the Question #5 of the Great Challenges, Role of the Caregiver: What can we learn from the practical and emotional knowledge and experience of caregivers, which is different from that of the medical team? To learn more visit www.tedmed.com/GreatChallenges.

1. What I’ve Learned from the
Family Caregivers I’ve Treated
Barry J. Jacobs, Psy.D.
Crozer-Keystone Family Medicine Residency
—Springfield, PA
www.emotionalsurvivalguide.com

2. Who I Am
 The only healthcare
professional on this
TEDMED panel
 Clinical psychologist, family
medicine educator and
frequent writer and
presenter on family
caregiving
 BUT many caregivers
think healthcare pros
don’t get them or
understand caregiving

3. WHAT ABOUT HEALTHCARE
PROFESSIONALS?
 There are many things wrong with our health
system (See my answer to Question #1)
 There are many times healthcare
professionals are insensitive to family
caregiver concerns
 But many professionals are themselves
family caregivers!

4. MY FAMILY’S STORY
 Here’s my father in his
early-20s dancing with
his mother. He was the
apple of my
grandmother’s eye.
She was loathe to let
him grow up and be on
his own.

5.  My father didn’t get married
to my mother until he was
36. My grandmother often
placed herself between
them.

6.  When I (on the right) was
14, my father was
suddenly diagnosed with
brain cancer. My mother
and grandmother
proceeded to struggle
over control of his care.
After he eventually died,
they didn’t speak to one
another again until the
day of my wedding, 18
years later

7.  My family’s caregiving
experience weakened our
bonds to one another.
Because of the family
dissension, our suffering
was compounded. I grew
up and became a
psychologist in order to
help other families handle
the rigors of caregiving
better than my family did.

8. THE STORY CONTINUES…
 My family experiences as a teenager inform my
clinical work. So do more recent family experiences:
About two years ago, I moved my mother and my
step-father, who has advanced Alzheimer’s
dementia, up from Florida to live in an apartment
near me. We go to doctors (many), day care
programs, nursing homes.
 Like many other professionals, I learn all the time
about family caregiving from these frequently
difficult personal experiences.

9. WHAT SHOULD HEALTHCARE
PROFESSIONALS KNOW?
 As a psychologist, I
served on an American
Psychological
Association
Presidential Task Force
(2010) that created the
Caregiver Briefcase
website:
http://www.apa.org/pi/a
bout/publications/caregi
vers/index.aspx

10. PROFESSIONALS (cont.)
 The 150-page website defines:
 What psychologists should know about caregiver
activities, stress and potential psychological risks
 Clinical techniques for helping caregivers
 Up-to-date research on family caregivers
 Providing education to psychology students about
caregivers
 How to advocate for family caregivers
 Support resources to suggest to family caregivers.

12. PROFESSIONALS (cont.)
 As a family medicine educator, I co-wrote an article
in 2008 with Montreal family physician Mark Yaffe
(above) on what medical schools should be teaching
budding doctors about family caregivers. Read the
article here.
 Among the topics we cited are: techniques for
evaluating caregiver burden, family health belief
models, and roles for physicians to play in order to
better acknowledge and help family caregivers

13. WHAT PROS STILL NEED TO
LEARN FROM CAREGIVERS
 The lived experience of providing
daily care
 Practical wisdom gained through
solving myriad caregiving
problems
 Frustrations with dealing with the
healthcare system
 Sources for resilience and
determination

14. LEARNING (cont.)
 I’ve learned the most from family caregivers by asking them:
“Why do you do what you do for your loved one?”
 In a 2006 article on “Honoring the Mission,” I’ve
recommended that all healthcare professionals start their
conversations with caregivers by first understanding the
caregiver’s sense of purpose and motivation. Read the article
here.

15. THE CAREGIVER MISSION
 Francine, a 60-year-old woman taking care of
her 82-year-old, demented father in her
home, told me:
“It gets annoying sometimes and it’s really
hard. But it’s also like a privilege or a gift
that it fell into my life path. That I could
give back to him for all he did for me. It
gives me a sense of worth to make a
difference in his life”

16. MISSION (cont.)
 Sam, a 56-year-old man taking care of his
wife with kidney failure:
“Who’s going to take care of her if I don’t
take care of her? Nobody. She’d be all
alone and just die. If anything happens to
her, I don’t want to have to feel guilty. I
want to be able to look back and know I
did the right thing.”

17. MISSION (cont.)
 Frank, a 74-year-old man taking care of his
wife after her stroke:
“I came up in a Christian home with good
scruples. I admit there are times that I’d
like to just take off because it’s been so
hard. She’s been incontinent at times.
But I have my morals. And she still has a
sweet attitude.”

18. MISSION (cont.)
 Tara, a 50-year-old woman caring for her
bed-bound mother with emphysema:
“She never really treated me like she loved
me when I was a kid. She always treated
my brother much better. And now where
is he? He stays away from her when she
needs him. I’m trying to do my best with
her. Maybe she’ll love me yet.”

19. MISSION (cont.)
 Todd and Stacy are two siblings in their
forties taking care of their demented father:
“We were always much closer to Mom than
Dad. He was rough and distant. But we
promised her before she died of cancer
that we’d take care of him. Otherwise, we
probably wouldn’t be doing what we’re
doing for him now. I hope she’s looking
down on us and feeling happy.”

20. WHAT I’VE LEARNED
 A caregiver’s sense of purpose bolsters her
against the deleterious effects of long and
often unappreciated sacrifice
 The purposes range from the spiritual to
family loyalty to the avoidance of guilt
 When I ask, listen carefully and honor
caregivers’ missions, they allow me into their
worlds of experience and emotions

21. LEARNED (cont.)
 Healthcare pros
that can connect to
family caregivers
on that level of
meaning and
emotion are in the
best position to be
effective healers
and guides

22. LEARNED (cont.)
 What I learn from family caregivers, I also
apply in my own life—pondering my own
missions, bolstering myself to do my best
with my own family
 Doing our best at family caregiving is in
itself an enriching experience that can
affect the way we view life in all regards.
 Read more.

23.  The Emotional Survival Guide for Caregivers
by Barry J. Jacobs, Psy.D. (Guilford, 2006)