1. Question 1: Top 10
Contributing Factors to
the Caregiving Crisis
Barry J. Jacobs, Psy.D.
Crozer-Keystone Family Medicine Residency
www.emotionalsurvivalguide.com

2. MY PSYCHOLOGICALLY
INCLINED TOP 10
 1) Aging America
 2) Changing US family trends
 3) Fragmented, “hasty” healthcare
 4) Insufficient planning and funding
for long-term care
 5) Lack of caregiver financial and emotional
supports

3. MY TOP 10 (cont.)
 6) Caregiver resistance to accepting support
 7) High rates of caregiver insomnia, anxiety and
depression
 8) Caregiver medical neglect and high morbidity
 9) Family ambivalence and divisiveness
 10) Isolation/Withdrawal

4. 1) AGING AMERICA
 Like most Western countries, America is getting
older. The average age in most states is at or
nearing middle age:
http://www.aarp.org/health/longevity/info-03-2012
 The life expectancy for an American male in
1900 was 48. Today, because of medical
advances, it’s 78:
http://www.infoplease.com/ipa/A0005140.html

5. 1) AGING (cont.)
 Older Americans have
higher incidences of
chronic and progressive
illnesses (e.g., dementia,
chronic pain, cancer,
heart disease) for which
they need care
 Most of that care
comes from family
members

6. 1) AGING (cont.)
 According to the 2009 NAC/AARP survey,
over 65 million Americans (31% of all US
households) were devoting time to taking care of
a loved one, mostly relatives over age 50:
 http://assets.aarp.org/rgcenter/il/caregiving_09
_es.pdf

7. 2) CHANGING US FAMILY
TRENDS
 Caregiving entails sacrifice and challenge. US
families have a more difficult time providing
care to ailing family members because of recent
trends:
 The rise of two-income families:
http://www.prb.org/Articles/2003/TraditionalFamilie

8. 2) FAMILY TRENDS (cont.)
 The rise of 1-person
households:
 http://www.pbs.org/ne
wshour/bb/social_issues
/jan-
june12/goingsolo_03-
27.html

9. 2) FAMILY TRENDS (cont.)
 Implications:
 Because more family members are consumed
with work responsibilities, they have less time
and energy available to care for others
 Because more households are single-person,
more care recipients and caregivers live alone
and apart, making logistics of care more
challenging

10. 3) FRAGMENTED, “HASTY”
HEALTHCARE
 American healthcare is segmented into various
parts—primary care, hospitals, nursing home,
home health care, rehabilitation centers—that
don’t communicate or coordinate well with one
another:
http://www.annfammed.org/content/7/2/100.full
 As a result, patients and family caregivers face
confusion and disarray trying to get the best care

11. HEALTHCARE (cont.)
 To contain costs,
hospitals discharge
patients sooner and
sicker than they did in
the past
 The burden of providing
care is consequently
being shifted to family
members

12. HEALTHCARE (cont.)
 Family caregivers are
increasingly being asked
to take on more intensive
and complex home care
duties—using feeding
tubes, giving injections,
managing meds
 http://www.pbs.org/this
emotionallife/blogs/whe
n-its-time-leave-
surviving-hospital-
discharge

13. 4) INSUFFICIENT FUNDING,
PLANNING FOR LTC
 Because of age or illness, most older Americans
will need support at some point with activities of
daily living—bathing, grooming, feeding
 Long-term care services—whether provided at
home or in facilities--is beyond the financial
reach of most individuals. Planning is key:
 http://www.youtube.com/watch?v=zrOK-
iMFHbo

14. LTC (cont.)
 Family caregivers too
often face the dilemma
of having to provide the
necessary hands-on care
on their own or liquidate
their parents’ assets (i.e.,
sell the family home) and
forfeit their inheritances
to pay for needed
services

15. 5) LACK OF CAREGIVER
SUPPORT
 In the past 25 years, the federal National Family
Caregiver Support Program and many consumer
family caregiver advocacy organizations (e.g.,
National Family Caregivers Association, Family
Caregiver Alliance, Well Spouse Association)
were launched, aiding hundreds of thousands of
family caregivers
 But American caregivers still receive limited
financial and emotional supports

16. SUPPORT (cont.)
 Patient medical and support
costs far outstrip family
resources
 Most US bankruptcies are
due to medical bills:
http://well.blogs.nytimes.co
m/2009/06/04/medical-
bills-cause-most-
bankruptcies/
 Yet the monthly stipend for
families who meet income
criteria for the caregiver
support program in my
county (Delaware County,
PA) is only about $300.

17. SUPPORT (cont.)
 25% of family caregivers
don’t feel stressed; 31% feel
highly stressed (NAC/AARP,
2009)
 Many of the latter feel
emotionally unsupported by
family, friends, community,
work colleagues and
healthcare/social service
professionals—and wind up
isolated and embittered

18. SUPPORT (cont.)
 The 2007 movie, The
Savages, depicts a
brother and sister who
feel lost and unsupported
by friends and
professionals in their
struggles to help their
estranged, demented
father.

19. 6) CAREGIVER RESISTANCE TO
ACCEPTING SUPPORT
 Even when support is available, many seniors
and family caregivers are reluctant to use that
support. Please see my article:
 http://www.psychotherapynetworker.org/recen
tissues/146-receiving-with-grace

20. RESISTANCE (cont.)
 For some family caregivers, accepting support from
others feels tantamount to shirking duties. Resisting
help stems from an American ethos of self-sufficiency
and fears of self-judgment and others’ criticisms
 Many caregivers don’t even identify themselves as
“caregivers,” emphasizing their normal family roles by
making comments like “I’m no caregiver. I’m her
husband”:
http://www.cfha.net/blogpost/753286/145690/I-m-Not-H
 People who don’t identify themselves as caregivers
don’t use caregiver support services

21. 7) CAREGIVER INSOMNIA,
ANXIETY & DEPRESSION
 Schulz (above)& Martire,
2004: Long-term caregiving is
linked with:
 Chronic insomnia
 Depression and anxiety
 At least 50% of Alzheimer’s
caregivers have at least mild
depression
 Long-term sleep deprivation
and stress increase rates of
other health problems

22. 8) CAREGIVER MEDICAL
NEGLECT & MORBIDITY
 Schulz & Martire (2004) also linked long-term
caregiving with medical problems:
 Musculoskeletal problems (e.g., back pain)
 Decreased immune system functioning
 Decreased use of preventative medical services
(e.g., not getting their blood pressure or blood
sugars checked)

23. MORBIDITY (cont.)
 In a 1999 article in the
Journal of the American
Medical Association,
Schulz & Beachy found
significantly higher
mortality rates among
elderly caregivers whose
spouses had Alzheimer’s
disease in comparison to
other seniors of the same
age who were not
engaged in caregiving

24. 9) FAMILY AMBIVALENCE &
DIVISIVENESS
 Winner of the 2012
Academy Award for Best
Foreign Film, A
Separation is an Iranian
movie that powerfully
depicts how family
divisiveness over the care
of an elder with dementia
led to the dissolution of a
marriage and other
family problems

25. FAMILY (cont.)
 When family members do not agree on a
loved one’s diagnosis, prognosis and care
needs, then family caregiving causes much
more duress for everyone involved

26. FAMILY (cont.)
 Siblings sometimes argue heatedly over the
caregiving plan. Please see my article:
 http://pqasb.pqarchiver.com/psychotherapynet
worker/access/2137483601.html?
FMT=ABS&FMTS=ABS:FT&type=current&d
ate=Sep%2FOct+2010&author=Barry+J.
+Jacobs&pub=Psychotherapy+Networker&edit
ion=&startpage=n
%2Fa&desc=In+Consultation
%2C+Doing+What
%27s+Best+for+Mom+and+Dad

27. FAMILY (cont.)
 Sometimes family members have too little
affection and cohesiveness to caregive together.
Then the brunt of the care falls on one family
member who resents the fact that other relatives
refuse to contribute. These families are forever
after left more fragmented by their alienating
caregiving experience.

28. 10) ISOLATION/WITHDRAWAL
 When there is inadequate support from family
members, friends, community and workplace,
family caregivers may feel socially isolated:
 http://www.seniorlivingmag.com/articles/reducing-
 When family caregivers feel trapped, hopeless
and depressed, then they are also likely to
withdraw from those who do offer support

29. ISOLATION (cont.)
 Isolation/withdrawal
weakens family
caregivers’ resolve and
undermines their
capacity to sustain
themselves over time
 We need more caregiver
support. We need more
caregivers willing to be
supported.

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