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The document identifies the top 10 contributing factors to the caregiving crisis in America: 1) an aging population, 2) changing family trends like more two-income households and single-person homes, 3) a fragmented healthcare system, 4) insufficient funding and planning for long-term care, 5) a lack of financial and emotional support for caregivers, 6) caregiver resistance to accepting support, 7) high rates of caregiver insomnia, anxiety and depression, 8) increased medical problems among caregivers, 9) family ambivalence and divisiveness around care plans, and 10) caregiver isolation and withdrawal due to a lack of adequate support systems.
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- 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)