Top 10 Contributing Factors to the

Caregiving CrisisBarry J. Jacobs, Psy.D.

Crozer-Keystone Family Medicine Residency

www.emotionalsurvivalguide.com

MY PSYCHOLOGICALLY INCLINED TOP 10

1. Aging America2. Changing US family trends3. Fragmented, “hasty” healthcare4. Insufficient planning and funding for long-

term care5. Lack of caregiver financial and emotional

supports6. Caregiver resistance to accepting support7. High rates of caregiver insomnia, anxiety

and depression8. Caregiver medical neglect and high

morbidity9. Family ambivalence and divisiveness10. Isolation/Withdrawal

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.

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

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.

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

2) FAMILY TRENDS (cont.)

The rise of 1-person households

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

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

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

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.

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.

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

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

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.

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

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.

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.

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

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

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)

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

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

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

FAMILY (cont.) Siblings sometimes argue heatedly

over the caregiving plan. See my article here.

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.

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

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.

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