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45 Facts on Family Caregivers from Research in 2011

As part of Family Caregiver Alliance’s report, “Family Caregiving 2011: Year in Review- A compilation of Research, Programs, Legislation, & Media Coverage” this brief highlights 45 data points based on research released in 2011 focused on family caregivers in the United States and Internationally.  The citations for all 45 facts are listed at the bottom of this posting and a PDF of this brief is also available here.

Research on Caregivers

1. The majority of caregivers are female (65%), and more than 80% are caring for a relative or friend who is age 50 or older. 2. Twenty-one percent of Americans who make $36,000 or less report that they are caregivers, while only 15% of high income ($90,000+) employees report serving as caregivers. 3. Alzheimer’s: The health impacts on the estimated 15 million Alzheimer’s and dementia caregivers in the U.S. is enormous with 60% reporting high levels of stress because of the prolonged duration of caregiving and 33% of caregivers reporting symptoms of depression. 4. A study of  30 spousal family caregivers for people with mild cognitive impairment (MCI) finds that the day-to-day challenges of caregiving can not only increase the levels of cortisol, but these caregivers also had slower rates of decline of their cortisol levels. 5. 1/3 of California caregivers live with the care recipients, and they provide 36 hours of care per week.  Only 7.4% of caregivers report receiving compensation for the care they provide, and 20% report that they spent over $250 of their own money on caregiving in the past month. 6. Of people aged 80 and older who live in the community (not institutional care), women were more likely than men to need assistance with personal care activities (14.8% vs. 10.2%). Of these activities, women were more likely than men to need assistance with bathing/showering (12.1% vs. 8.1%), dressing (9.1% vs. 7%), and eating (3.9% vs. 2.4%).

Caregiving and Trying to Keep Your Job

7. While 71% of caregivers report that their employer knows of their caregiving role, only about a quarter of employees have access to employer caregiver programs. 8. 17% of the American full-time workforce are caregivers, and this amounts to a combined 126, 222, 624 missed workdays each year, at an estimated cost to the economy of $25.2 billion in lost productivity. 9. Carl Sorabella worked for a real estate company in Massachusetts for 14 years, but when he requested a flexible schedule so that he could accompany his wife to medical appointments for her stage 4 cancer, he was fired.  Paid Sick Day laws were enacted in Connecticut, Philadelphia, and Seattle, but defeated in Denver.  In Wisconsin, the Governor enacted legislation nullifying Milwaukee’s paid sick days ordinance. 10. “Most employers report that California’s Paid Family Leave had either a “positive effect” or “no noticeable effect” on productivity (89 percent), profitability/performance (91 percent), turnover (96 percent), and employee morale (99 percent).” 11. Only 9% of primary caregivers in Australia who cared for 40 hours a week were also able to work full time.

Long-Term Care and Healthcare Costs

12. Two-thirds of respondents in a CA survey worry about the cost of LTC and two-thirds could not afford more than three months of nursing home care if they were paying for it themselves. 13. Brand name drugs facing generic competition in 2010 increased their retail prices by 51% from 2004 to 2010 (from $1,842 to $2,610 for a year of therapy). 14. Out-of-pocket expenses for cancer patients in one study totaled $1,266 a month with prescription medication representing the largest expense at $523 a month.  47% of participants reported using all or part of their savings, 30% did not fill prescriptions, 20% took less medication than prescribed, and 40% borrowed money to pay for prescriptions. 15. On average, patients who received palliative care incurred $6,900 less in hospital costs during a given admission than a matched group of patients who received usual care. 16. 36% of respondents to a survey report that they delayed routine or elective medical procedures in 2011 because of the economy, as compared to 20% in 2009.

Veterans and their Families

17. As high as 20% (about 400,000) of the two million soldiers who served in Iraq and Afghanistan have developed or are at risk of developing PTSD. 18. As of November 2011, more than 1,800 Family Caregivers were approved for the Department of Veterans Affairs’ (VA) Program of Comprehensive Assistance for Family Caregivers.  The average monthly stipend for caregivers is between $1,500 and $1,800, and 400 more family caregivers also received health care through the program that they didn’t previously have. 19. The VA will be required to report in May 2013 on the feasibility of expanding the caregiver program beyond solely 9-11 veterans, who only comprise about 10% of the veteran population. 20. The VA’s Caregiver Support Line received 25,000 phone calls and emails during its first year, and Caregiver Support Coordinators responded to over 8,000 referrals through the program.

The Financial Impact of Caregiving 

21. An average caregiver aged 50 or older who stops work to be a caregiver full-time will forego $303,880 worth of wages, Social Security, and pensions benefits. 22. Close to half (47%) of single female seniors are economically insecure, while more than half of all seniors of color do not have the resources required to support themselves over the remainder of their lives. 23. In a survey about long-term care needs, of family caregivers who helped pay for a loved one’s long-term care needs, 93% of caregivers reported using their own current income sources to help pay for care, 74% personally provided care in a loved one’s home, 54% brought their loved one into their home, and 49% used their own savings to help pay for care. 24. More than 51.4 million Americans of all ages live in a multigenerational household in 2011, a greater than 10% increase since the start of the recession in 2007. Reasons include:

  • current economic climate (66%);
  • job loss/change/underemployment (40%);
  • health care costs (20%); and
  • foreclosures or other housing loss (14%).

25. Adults aged 50-59 who are food-insecure are almost twice as likely to be diabetic, five times more likely to suffer from depression, and more than twice as likely to have at least one activity of daily living limitation.

Programs that Support Caregivers

26. In California, 7 agencies oversee 36 different programs serving the elderly and disabled. 27. In a national survey of Area Agencies on Aging, 60.5% reported cutting budgets in all or some departments in 2010, 52.7% reported increased caseloads, 50.2% eliminated or reduced salary increases, 49.3% reduced staff through attrition, by not replacing personnel who left the agency; 24.2% reported converting full-time positions to part-time positions, and 23.3% used lay-offs. 28. The Center for Medicare Advocacy filed a lawsuit in November 2011 against the federal government based on Medicare patient stays being designated as outpatient or observational status as compared to in-patient status. 29. Ohio provided a $55.6 million increase for PASSPORT, resulting in 4,800 more Ohioans being able to access home and community-based services at about 1/3 of the cost of nursing homes. 30. California’s In Home Supportive Services program, the state’s Personal Care Service Program, paid for, on average, 21.4 hours of week in 2008, while the authors of a study note that the national average of care provided (both paid and unpaid) is 31.4 hours a week. 31. Paying spouses, parents, and other relatives through California’s In Home Supportive Services program had no financial disadvantages and some advantages (lower average Medicaid expenditures and fewer nursing home admissions). 32. The hours of unmet need for care more than doubles from 62 million hours to 143 million hours when family caregivers in the United Kingdom are removed from the equation of social care (assistance with activities of daily living) for older adults.

Home and Community-Based Services versus Nursing Home Care

33. The number of people on waiting lists for Medicaid HCBS Waivers increased by 17% from 2009 to 2010, with a total of 428,571 individuals on waiting lists for 149 waivers, and an average length of time on a wait list of 22 months. A federal class action lawsuit is seeking relief for more than 19,000 Florida residents with developmental disabilities who are on a years-long waiting list. 34. The number of minority elders living in nursing homes increased from 1999 to 2008, the number of elderly Hispanics grew by 54.9%, elderly Asians increased 54.1%, and elderly black residents increased 10.8%, while the number of elderly whites in nursing homes decreased by 10.2%.

How Technology Is Changing Caregiving

35. A nursing home in Australia announced in June, 2011 that it would begin fitting patients with dementia with GPS tracking devices. 36. Minnesota’s information and referral service for seniors began offering an instant messaging service, staffed by 45 experts that is expected to generate 20,000 requests for help annually. 37. Oklahoma became the first state to fully automate Medicaid enrollment online, meaning you can apply and receive a decision online. 38. 15.5 million older Americans will experience poor transit access by 2015.

Quality, Costs, and Litigation for Nursing Homes

39. The national average cost of nursing home care is 241% of the average annual household income of older adults. 40. 43% of nursing homes in North Carolina from 2007 to 2009 incorporated pre-dispute binding arbitration provisions in their admission contracts. 41. Non-profit/government nursing homes and smaller nursing homes (49 or fewer beds) had the highest ratings for patient safety culture, highest rating of respondents who would tell friends this is a safe nursing home, and the highest percentage of respondents who gave their nursing homes an overall rating of “excellent” or “very good.”

Direct Care Workers

42. The median hourly wage for direct care workers in 2009 was $10.58 as compared to the median for all U.S. workers of $15.95. In addition to low wages, direct care workers also face a lack of hours (48% in 2009 worked less than full-time year-round), and lack access to health care, with an estimated 900,000 direct-care workers in 2009 lacking health care coverage. 43. Each turnover of a direct care worker in Iowa costs $3,749 in direct expenses for the employer, and if indirect costs are included, each turnover costs a total of $6,793. 44. A county judge in Washington State ruled that the Department of Social and Health Services (DSHS) owes 22,000 home-care workers about $96 million in back pay and accrued interest.  The lawsuit is based on a 2003 decision by the state to pay caregivers 15% less if they lived in the same household as the care recipient (in the state’s Medicaid program).  45. Minnesota and California proposed similar cuts that would impact family caregivers in 2011 and 2012.

[1] Feinberg, L, Reinhard, S C, Houser, A, Choula, R. (2011, July). Valuing the Invaluable: 2011 Update – The Growing Contributions and Costs of Family Caregiving. AARP Public Policy Institute. Retrieved from:http://www.aarp.org/relationships/caregiving/info-07-2011/valuing-the-invaluable.html
[2] Cynkar, Peter, Mendes, Elizabeth. (2011, July 26) More Than One in Six American Workers Also Act as Caregivers. GALLUP Wellbeing. Retrieved from:  http://www.gallup.com/poll/148640/One-Six-American-Workers-Act-Caregivers.aspx
[3] Alzheimer’s Association. (2011). 2011 Alzheimer’s Disease Facts and Figures. Retrieved from: http://www.alz.org/downloads/Facts_Figures_2011.pdf
[4] Savla J, Roberto KA, Blieszner R, Cox M, Gwazdauskas F. (2011). Effects of Daily Stressors on the Psychological and Biological Well-being of Spouses of Persons With Mild Cognitive Impairment. The Journals of Gerontology Series B Psychological Sciences and Social Sciences. 653-664. First published online July 6, 2011.  Retrieved from: http://psychsocgerontology.oxfordjournals.org/content/66B/6/653.abstract
[5]> Hoffman GJ and Mendez-Luck CA. Stressed and Strapped: Caregivers in California. Los Angeles, CA:UCLA Center for Health Policy Research, 2011. Retrieved from: http://www.healthpolicy.ucla.edu/pubs/files/caregiverspbsep2011.pdf
[6] Center for Disease Control and Prevention. (2011, June 24). QuickStats: Percentage of Noninstitutionalized Adults Aged ≥80 Years Who Need Help with Personal Care,* by Sex — United States, 2008-2009.  Retrieved from: http://www.cdc.gov/mmwr/preview/mmwrhtml/mm6024a5.htm?s_cid=mm6024a5_w
[7] Witters, Dan (2011, July 27). Caregiving Costs U.S. Economy $25.2 Billion in Lost Productivity. GALLUP Wellbeing. Retrieved from: http://www.gallup.com/poll/148670/Caregiving-Costs-Economy-Billion-Lost-Productivity.aspx#1
[8]> Ibid.
[9] Kim, Susanna. (2011, June 15). Man says he was Fired After Telling Employer His Wife Has Cancer. ABC News. Retrieved from: http://abcnews.go.com/Business/massachusetts-man-fired-revealing-wife-cancer/story?id=13845661
[10] Appelbaum, E, Milkman, R. (2011, January) Leaves that Pay Employer and Worker Experiences with Paid Family Leave in California. Retrieved from: http://www.cepr.net/index.php/publications/reports/leaves-that-pay
[11] Australian Bureau of Statistics. (2011, October). Caring in the Community, Australia, 2009. Retrieved from: http://www.abs.gov.au/AUSSTATS/abs@.nsf/Lookup/4436.0Main+Features12009?OpenDocument
[12] Scan Foundation, UCLA Center for Health Policy Research. (2011, August). Poll Finds California Voters 40 and Older Are Struggling to Make Ends Meet and Financially Unprepared for Growing Older. Retrieved from: http://www.thescanfoundation.org/commissioned-supported-work/poll-finds-california-voters-40-and-older-are-struggling-make-ends-meet-
[13] Schondelmeyer, S, Purvis, L. (2011, March). Retail Prices for Widely Used Brand Name Drugs Increase Considerably Prior to Generic Competition. AARP Public Policy Institute, PRIME Institute, University of Minnesota. Retrieved from: http://assets.aarp.org/rgcenter/ppi/health-care/i49-rx-2011.pdf
[14] Y. Zafar, A. M. Goetzinger, R. Fowler, A. Gblokpor, D. Warhadpande, D. H. Taylor, D. Schrag, J. M. Peppercorn, A. P. Abernethy (2011, June).  Impact of out-of-pocket expenses on cancer care. Paper presented at 2011 American Society of Clinical Oncology conference, Chicago, IL. Abstract retrieved from: http://www.asco.org/ASCOv2/Meetings/Abstracts?&vmview=abst_detail_view&confID=102&abstractID=77396
[15] Morrisonl, R.S., Dietrich, J, Ladwig, S, Quill, T, Sacco, J, Tangeman, J, Meier, D. (2011, March). Palliative Care Consultation Teams Cut Hospital Costs For Medicaid Beneficiaries. Health Affairs. Retrieved from: http://content.healthaffairs.org/content/30/3/454.abstract
[16]Sun Life Financial (2011, October). U.S. Unretirement Index – Fall 2011Americans’ trust in retirement reaches a tipping point. Retrieved from: http://cdn.sunlife.com/static/unitedstates/Unretirement%20Index/files/2011%20files/UnretirementIndex2011_Result_Final.pdf
[17] Colliver, Victoria. (2011, June 22). Brains of Vets with PTSD can change as they age. San Francisco Chronicle. Retrieved from:  http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2011/06/21/MNQ91K0MQ9.DTL#ixzz1ok67vryA
[18] Amdur, Deborah. (2011, November 11). Day 11: 2011 Marked Milestones in VA’s Recognition of Caregivers. Family Caregiver Alliance Blog series: “30 Days of Caregiving”  Retrieved from: http://blog.caregiver.org/?p=531
[19] Rhee, Foon. (2012, February 5). The Conversation: New help for our wounded warriors. Sacramento Bee. Retrieved from: http://www.sacbee.com/2012/02/05/4238081/new-help-for-our-wounded-warriors.html
[20] Veterans Administration (2012, February 1). VA Caregivers Support Line Celebrates First Anniversary. [Press Release]. Retrieved from: http://www.va.gov/opa/pressrel/pressrelease.cfm?id=2256
[21] Met Life Mature Market Institute, National Alliance for Caregiving, Center for Long Term Care Research and Policy, New York Medical College (2011, June). The MetLife Study of Caregiving Costs to Working Caregivers Double Jeopardy for Baby Boomers Caring for Their Parents. Retrieved from:  http://www.metlife.com/assets/cao/mmi/publications/studies/2011/mmi-caregiving-costs-working-caregivers.pdf
[22] Meschede, T, Sullivan, L, Shapiro, T. (2011, July) From Bad to Worse: Senior Economic Insecurity on the Rise. Demos and the Institute on Assets & Social Policy. Retrieved from: http://iasp.brandeis.edu/pdfs/FromBadtoWorse.pdf
[24] Generations United. (2011). Family Matters: Multigenerational Families in a Volatile Economy. Retrieved from: http://www.gu.org/LinkClick.aspx?fileticket=QWOTaluHxPk%3d&tabid=157&mid=606
[25] Squires, B. (2011, August). Food Insecurity among Older Adults. AARP Foundation. Retrieved from: http://www.aarp.org/aarp-foundation/info-2011/Foundation_2011_Hunger_Research.html
[26] Little Hoover Commission (2011, April). A Long Term Strategy for Long-Term Care. Retrieved from: http://www.lhc.ca.gov/studies/205/Report205.pdf
[27] National Association of Area Agencies on Aging, Scripps Gerontology Center. (2011, July). Area Agencies on Aging: Advancing Health and Long-Term Services and Supports 2010 Survey of Area Agencies on Aging. Retrieved from: http://www.n4a.org/pdf/2011_AAA_Survey_Report.PDF
[28] Center for Medicare Advocacy. (2011, November 3). Suit Seeks to End Hospital “Observational Status” Retrieved from: http://www.medicareadvocacy.org/medicare-info/observation-status/ending-hospital-observation-status/
[29] Russell, Rose. (2011, August 7). More ailing, aging loved ones are being cared for by relatives. Toledo Blade. Retrieved from: http://www.toledoblade.com/Medical/2011/08/07/The-We-Generation-more-ailing-aging-loved-ones-are-being-cared-for-by-relatives.html.  See also: Rebalancing Medicaid Long-Term Care: Enabling Seniors and People With Disabilities to Live With Dignity in Settings They Prefer. Retrieved from: http://governor.ohio.gov/Portals/0/pdf/budget/Post%20Budget%20Long-Term%20Care%20Fact%20Sheet.pdf
[30] Newcomber, RJ, Harrington, C, Stone, J, Bindman, A, Helmar, M. (2011, August). California’s Medi-Cal Home & Community Based Services Waivers, Benefits & Eligibility Policies, 2005-2008. University of California, San Francisco and California Department of Health Care Services. Retrieved from: http://www.thescanfoundation.org/commissioned-supported-work/californias-medi-cal-home-community-based-services-waivers-benefits-elig
[31] Newcomer, RJ, Kang, T, Doty, P. (2011, October 19) Allowing Spouses to Be Paid Personal Care Providers: Spouse Availability and Effects on Medicaid-Funded Service Use and Expenditures. The Gerontologist. Retrieved from: http://gerontologist.oxfordjournals.org/content/early/2011/10/18/geront.gnr102.short?rss=1
[32] Vlachantoni, A, Shaw, R, Willis, R, Evandrou, M, Falkingham, J, Luff, R. (2011). Measuring unmet need for social care amongst older people. Population Trends. Retrieved from: http://www.ons.gov.uk/ons/rel/population-trends-rd/population-trends/no–145–autumn-2011/index.html
[33] Kaiser Commission on Medicaid and the Uninsured (2011, December) Medicaid Home and Community-Based Services Programs: Data Update. Retrieved from: http://www.kff.org/medicaid/upload/7720-05.pdf See also: Disability Rights Florida (2011, March 24). Lawsuit Asks Federal Court to Help Move DD Waiver Waitlist. [Press Release]. Retrieved from: http://www.disabilityrightsflorida.org/newsroom/story/class_action_lawsuit_seeks_to_end_waitlist
[34] Feng, Z, Fennell, M, Tyler, D, Clark, M, Mor, V. (2011, July). Growth of Racial and Ethnic Minorities in US Nursing Homes Driven by Demographics and Possible Disparities in Options. Health Affairs. Retrieved from: http://content.healthaffairs.org/content/30/7/1358.abstract
[35] O’Connell, Brigid. (2011, June 11).  Aged care advocates angered at GPS plan for elderly. Herald Sun. Retrieved from: http://www.heraldsun.com.au/news/more-news/aged-care-patients-to-get-gps-trackers/story-fn7x8me2-1226073615923
[36] Wolfe, Warren. (2011, September 1). Help line expands aid for seniors. Star Tribune. Retrieved from: http://www.startribune.com/local/128917828.html
[37] Weaver, Christopher. (2011, August 3). Making Medicaid As Easy As A Netflix Membership. Capsules, the Kaiser Health News Blog. Retrieved from: http://capsules.kaiserhealthnews.org/index.php/2011/08/making-medicaid-as-easy-as-a-netflix-membership/
[38] DeGood, K. (2011). Aging in Place, Stuck without Options: Fixing the Mobility Crisis Threatening the Baby Boom Generation. Transportation for America. Retrieved from: http://t4america.org/resources/seniorsmobilitycrisis2011/
[39] Reinhard, S, Kassner, E, Houser, A, Mollica, R. (2011, September). Raising Expectations A State Scorecard on Long-Term Services and Supports for Older Adults, People with Physical Disabilities, and Family Caregivers. AARP Public Policy Institute. Retrieved from: http://www.longtermscorecard.org/
[40] Tripp, Lisa. (2011). “Arbitration Agreements Used by Nursing Homes: An Empirical Study and Critique of AT&T Mobility v. Concepcion.” Retrieved from http://works.bepress.com/lisa_tripp/1
[41] Sorra J, Famolaro T, Dyer N, et al. (2011, August). Nursing Home Survey on Patient Safety Culture: 2011 User Comparative Database Report. AHRQ Publication No. 11-0071. Prepared by Westat, Rockville, MD, under Contract No. HHSA 290200710024C. Agency for Healthcare Research and Quality, Rockville, MD. Retrieved from: http://www.ahrq.gov/qual/nhsurvey11/
[42] Dawson, S. (2011, May). Improving Jobs and Care A National Sector Strategy. PHI National. Retrieved from: http://phinational.org/archives/phi-reports-lessons-learned-from-20-year-national-sector-strategy/
[43] Iowa Direct Care Workforce Initiative. (2011) Cost of Turnover in the Direct Care Workforce. Retrieved from: http://blog.directcarealliance.org/wp-content/uploads/2011/07/2011-Cost-of-Turnover-in-Direct-Care-IA-Dept.-of-Human-Services.pdf
[44] Sullivan, Jennifer. (2011, December 2). Judge: DSHS owes $96 million to caregivers. Seattle Times. Retrieved from: http://seattletimes.nwsource.com/html/localnews/2016916336_dshs03m.html
[45] Kelly, Kathy. (2011, September 22). Are Family Caregivers Worth Less? Family Caregiver Alliance blog. Retrieved from:http://blog.caregiver.org/?p=255 .  For cuts to California’s IHSS program that may impact family caregivers, see: California Budget Project (2012, January 10). Leak Results in Early Budget Release: Governor Makes Deep Cuts to the Safety Net and Assumes Voters Approve November Ballot Measure. Retrieved from: http://www.cbp.org/publications/documents/120106_Gov_Budget_Release.pdf