Barry Jacobs weighs in on the Question #1 of the Great Challenges, Caregiver Crisis: Name the top 10 contributing factors for the Great Challenge, “The Caregiver Crisis”? To learn more visit www.tedmed.com/GreatChallenges.

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
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

3. 1) AGING AMERICA
 Like most Western countries, America is getting
older. The average age in most states is at or
nearing middle age. Learn more by clicking here.
 The life expectancy for an American male in
1900 was 48. Today, because of medical
advances, it’s 78. Learn more by clicking here.

4. 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

5. 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
 Learn more by clicking here.

6. 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

7. 2) FAMILY TRENDS (cont.)
 The rise of 1-person
households

8. 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

9. 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. Learn more by clicking here.
 As a result, patients and family caregivers face
confusion and disarray trying to get the best care

10. 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

11. 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. Learn more by
clicking here.

12. 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.

13. 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

14. 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

15. SUPPORT (cont.)
 Patient medical and support
costs far outstrip family
resources
 Most US bankruptcies are
due to medical bills.
 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.

16. 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

17. 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.

18. 6) CAREGIVER RESISTANCE TO
ACCEPTING SUPPORT
 Even when support is available, many seniors
and family caregivers are reluctant to use that
support. See my article.

19. 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.‖ Learn more by clicking here.
 People who don’t identify themselves as caregivers
don’t use caregiver support services

20. 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

21. 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)

22. 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

23. 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

24. 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

25. FAMILY (cont.)
 Siblings sometimes argue heatedly over the
caregiving plan. See my article here.

26. 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.

27. 10) ISOLATION/WITHDRAWAL
 When there is inadequate support from family
members, friends, community and
workplace, family caregivers may feel socially
isolated.
 When family caregivers feel trapped, hopeless
and depressed, then they are also likely to
withdraw from those who do offer support

28. 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.

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