Selected Caregiver Statistics

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The Selected Caregiver Statistics fact sheet has been reformatted to enable more frequent updates due to the high volume of information now available from surveys, research and policy studies. Each statistic will contain the citation and the date of entry into the Selected Caregiver Statistics Fact Sheet for ease of use. Some key studies, while older, will remain until updates become available if the information is viewed as a critical or unique finding. Updates will continue on a rolling basis as new statistical information becomes available. All statistics will start with the FCA update: November 2012, and will be "date-stamped" as to month and year of placement on the Selected Caregiver Statistics Fact Sheet.

Definitions

For our purposes, a caregiver is an unpaid individual (a spouse, partner, family member, friend, or neighbor) involved in assisting others with activities of daily living and/or medical tasks. Formal caregivers are paid care providers providing care in one's home or in a care setting (daycare, residential, care facility, etc).

Who are the Informal Caregivers?

Although there may appear to be wide discrepancies in estimates of the number of informal caregivers in the U.S., the figures cited below reflect variations in the definitions and criteria used in each study, e.g., age of care recipients surveyed or relationship of caregiver to care recipient.

Magnitude

  • 65.7 million caregivers make up 29% of the U.S. adult population providing care to someone who is ill, disabled or aged.
    [The National Alliance for Caregiving and AARP (2009), Caregiving in the U.S. National Alliance for Caregiving. Washington, DC.] - Updated: November 2012

  • 52 million caregivers provide care to adults (aged 18+) with a disability or illness.
    [Coughlin, J., (2010). Estimating the Impact of Caregiving and Employment on Well-Being: Outcomes & Insights in Health Management, Vol. 2; Issue 1] - Updated: November 2012

  • 43.5 million of adult family caregivers care for someone 50+ years of age and 14.9 million care for someone who has Alzheimer's disease or other dementia.
    [Alzheimer's Association, 2011 Alzheimer's Disease Facts and Figures, Alzheimer's and Dementia , Vol.7, Issue 2.] - Updated: November 2012

  • LGBT respondents are slightly more likely to have provided care to an adult friend or relative in the past six months: 21% vs. 17%.
    [MetLife: Still Out, Still Aging 2010. Study of Lesbian, Gay, Bisexual, and Transgender Baby Boomers] - Updated: November 2012

Economic Value

  • Caregiver services were valued at $450 billion per year in 2009- up from $375 billion in year 2007.
    [Valuing the Invaluable: 2011 Update, The Economic Value of Family Caregiving. AARP Public Policy Institute.] - Updated: November 2012

  • The value of unpaid family caregivers will likely continue to be the largest source of long-term care services in the U.S., and the aging population 65+ will more than double between the years 2000 and 2030, increasing to 71.5 million from 35.1 million in 2000.
    [Coughlin, J., (2010). Estimating the Impact of Caregiving and Employment on Well-Being: Outcomes & Insights in Health Management, Vol. 2; Issue 1] - Updated: November 2012

Gender

  • More women than men are caregivers: an estimated 66% of caregivers are female. One-third (34%) take care of two or more people, and the average age of a female caregiver is 48.0.
    [The National Alliance for Caregiving and AARP (2009), Caregiving in the U.S. National Alliance for Caregiving. Washington, DC.] - Updated: November 2012

  • Male caregivers are less likely to provide personal care, but 24% helped a loved one get dressed compared to 28% of female caregivers. 16% of male caregivers help with bathing versus 30% of females. 40% of male caregivers use paid assistance for a loved one's personal care. Approximately 14.5 million caregivers are men out of the 43.4% who care for an older family member.
    [The National Alliance for Caregiving and AARP (2009), Caregiving in the U.S. National Alliance for Caregiving. Washington, DC.] - Updated: November 2012

  • The gender balance shifts to close to equal participation among 18 to 49 year-old-care recipients (47% of caregivers are male), while among the 50+ recipients, it tips to females (32% male, 68% female).
    [The National Alliance for Caregiving and AARP (2009), Caregiving in the U.S. National Alliance for Caregiving. Washington, DC.] - Updated: November 2012

  • Research suggests that the number of male caregivers may be increasing and will continue to do so due to a variety of social demographic factors.
    [Kramer, B. J. & E. H. Thompson, (eds.), "Men as Caregivers," (New York: Prometheus Books, 2002).] - Updated: November 2012

Gender & Care Tasks

  • Men may be sharing in caregiving tasks more than in the past, but women still shoulder the major burden of care. For example, while some studies show a relatively equitable distribution of caregiving between men and women, female caregivers spend more time providing care than men do (21.9 vs. 17.4 hours per week).
    [The National Alliance for Caregiving and AARP (2009), Caregiving in the U.S. National Alliance for Caregiving. Washington, DC.] - Updated: November 2012

  • However, among spousal caregivers 75+, both sexes provide equal amounts of care.
    [McCann, J.J., Hebert, L.E., Beckett, L.A., Morris, M.C., Scherr, P.A., & Evans, D.A., Comparison of informal caregiving by black and white older adults in a community population (2000) Journal of the American Geriatrics Society 48:1612-1617.] - Updated: November 2012

  • Other studies have found that 36% of women caregivers handle the most difficult caregiving tasks (i.e., bathing, toileting and dressing) when compared with 24% for their male counterparts, who are more likely to help with finances, arrange care, and other less burdensome tasks.
    [The National Alliance for Caregiving and AARP (2009), Caregiving in the U.S. National Alliance for Caregiving. Washington, DC.] - Updated: November 2012

  • In a MetLife study, both men and women are likely to be caregivers in near equal proportions: 20% men vs. 22% women in the LGBT group, and 17% men vs. 18% women in the general population sample. Male caregivers report providing more hours of care than female caregivers: the average weekly hours of care provided by women from both the LGBT and general population samples is similar—26 vs. 28 hours—but LGBT men provide far more hours of care than men from the comparison sample: 41 hours versus 29. This reflects that about 14% of the gay men indicate that they are full-time caregivers, spending over 150 hours per week in this capacity, compared to 3% of the lesbian and 2% of the bisexual respondents.
    [MetLife: Still Out, Still Aging. 2010. Study of Lesbian, Gay, Bisexual, and Transgender Baby Boomers] - Updated: November 2012

Errands and Day-to-Day Tasks

  • Caregivers reported in a Gallup survey that they spend a lot of time on different tasks related to looking after the care recipent. The majority of caregivers (55%) in the Gallup study reported they had cared for three years or more. The average days per month spent on shopping, food preparation, housekeeping, laundry, transportation, and giving medication is 13, and 6 days per month on feeding, dressing, grooming, walking, bathing, and assistance toileting.
    [Gallup Healthways Wellbeing Survey, Most caregivers Look After Elderly Parent; Invest a Lot of Time, July 2011] - Updated: November 2012

  • Caregivers spend fewer days—on average, six per month—performing personal tasks, (eating, dressing, or helping with bathroom tasks). This may correlate with 64% of caregivers who say the person they care for does not live with them. Caregivers reported that they spend an estimated 13 hours per month researching care services or information on disease, coordinating physician visits or managing financial matters.
    [Gallup Healthways Wellbeing Survey, Most caregivers Look After Elderly Parent; Invest a Lot of Time, July 2011] - Updated: November 2012

  • The Home Alone study―a study of family caregivers who provide complex chronic care―found that nearly half of the caregivers surveyed (46% or 777) performed medical & nursing tasks. More than 96% (747) also provided activities of daily living (ADL's) supports (e.g., personal hygiene, dressing/undressing, or getting in and out of bed) or instrumental activities of daily living (IADL's) (e.g., taking prescribed medications, shopping for groceries, transportation or using technology) supports, or both. Of these caregivers nearly two-thirds (501) did all three types of tasks. Of the non-medical family caregivers, two-thirds (605) provided IADL assistance only.
    [Home Alone: Family Caregivers Providing Complex Chronic Care, AARP with United Health Hospital Fund October 2012] - Updated: November 2012

  • Caregivers in the Home Alone study reported which tasks were more difficult comparing ADL's with more clinical tasks. 67% found using incontinence equipment, or supplies, and administering enemas more difficult. 66% reported wound care was difficult, (bandages, ointment, prescription drugs for skin care, treating pressure sores, or post surgicial wounds) or ostomy care. Thirdly, 61% of caregivers reported managing medications, including IV & injections difficult.
    [Home Alone: Family Caregivers Providing Complex Chronic Care, AARP with United Health Hospital Fund October 2012] - Updated: November 2012

  • Caregivers when asked if they had a choice to perform clinical tasks 57% of caregivers in the Home Alone study reported no, but stated that it was self-imposed: 43% felt it was their personal responsibility for reasons such as no one else to do it, or insurance wouldn't pay a professional. 12% said pressure came from the care receiver and 8% said it came from another family member.
    [Home Alone: Family Caregivers Providing Complex Chronic Care, AARP with United Health Hospital Fund October 2012] - Updated: November 2012

Age

  • While caregivers are found across the age span, the average age of caregiver is 48.0 years; about 51% of caregivers are between the ages of 18 and 49.
    [The National Alliance for Caregiving and AARP (2009), Caregiving in the U.S., Bethesda, MD: National Alliance for Caregiving. Washington, DC.] - Updated: November 2012

  • According to the survey, older caregivers are more likely to care for a spouse or partner (25%).
    [The National Alliance for Caregiving and AARP (2009), Caregiving in the U.S.: National Alliance for Caregiving. Washington, DC.] - Updated: November 2012

  • Of those caring for someone aged 50+, the average age of caregivers is between 50-64.
    [The National Alliance for Caregiving and AARP (2009), Caregiving in the U.S: National Alliance for Caregiving. Washington, DC.] - Updated: November 2012

  • Many caregivers of older people are themselves growing older. Of those caring for someone aged 65+, the average age is 63 years with one third of these caregivers in fair to poor health.
    [Administration on Aging, NFCSP: Complete Resource Guide, 2005] - Updated: November 2012

  • Currently more than half of care recievers (56%) are under age 75, and almost one-third (28%) are under 50 years old.
    [The National Alliance for Caregiving and AARP (2009), Caregiving in the U.S., Bethesda, MD: National Alliance for Caregiving. Washington, DC.] - Updated: November 2012

  • Caregivers of adults are now older, on average, than were their counterparts in 2004. Their average age now 49.2 years, compared to 46.4 in 2004.
    [The National Alliance for Caregiving and AARP (2009), Caregiving in the U.S. National Alliance for Caregiving. Washington, DC.] - Updated: November 2012

  • Similarly, the number of hours dedicated to caregiving increases with the age of the caregiver.
    [Partnership for Solutions, Chronic Conditions: Making the Case for Ongoing Care. Johns Hopkins University, Baltimore, M.D. (2004).] - Updated: November 2012

Number of Hours Dedicated to Caregiving by Age of Family Caregiver

[Graph Data: Partnership for Solutions, Chronic Conditions: Making the Case for Ongoing Care. Johns Hopkins, University, Baltimore, MD. (2004).] - Updated: November 2012

Ethnicity

  • Rates of caregiving vary somewhat by ethnicity. Among the caregiving U.S. adult population 18+, approximately 72% are white; 13% are African-American. The percentage in the Hispanic community is only slightly lower, at 12%, and 2% for Asian-Americans.
    [The National Alliance for Caregiving and AARP (2009), Caregiving in the U.S: National Alliance for Caregiving. Washington, D.C.] - Updated: November 2012

  • African-American caregivers were on average older than their counterparts (48.0), and more likely to be single or never married (28%) than caregivers overall (15%) or white (12%).
    [National Alliance for Caregiving and AARP (2009), Caregiving in the U.S., A Focused Look at Those Caring for Someone Age 50 or Older, Bethesda, MD: National Alliance for Caregiving, Washington, D.C.] - Updated: November 2012

  • Studies show that 27% of Hispanic caregivers indicate their health is fair or poor compared to 15% for white caregivers and 15% for Asian-Americans.
    [The National Alliance for Caregiving and AARP (2009), Caregiving in the U.S: National Alliance for Caregiving. Washington, D.C.] - Updated: November 2012

  • More than half of African-American caregivers find themselves "sandwiched" between caring for an older person, and a younger person under age 18 or caring for more than one older person. African-American caregivers are also more likely to live with the care recipient and spend an average of 20.6 hours per week providing care. In addition, 66 percent of African-American caregivers are employed full or part-time.
    [The National Alliance for Caregiving and AARP (2009), Caregiving in the U.S., Bethesda, MD: National Alliance for Caregiving. Washington, D.C.] - Updated: November 2012

  • Ethnic differences are also found with regard to the need of the care recipient. African-American caregivers (41%) were more likely to provide help with more than three of activities of daily living (ADLs) than white caregivers (28%), or Asian-Americans (23%), (e.g., getting in and out of bed, dressing, feeding, managing incontinence or getting to and from the toilet).
    [Alzheimer's Association, 2011 Alzheimer's Disease Facts and Figures, Alzheimer's and Dementia , Vol.7, Issue 2.] - Updated: November 2012

Relationships between Caregivers and Care Recipients

  • The percentage of caregivers caring for individuals over 85 years of age has increased across all three of the national surveys of informal caregivers conducted by National Alliance for Caregiving in the U.S. and AARP, in 1997, 2004, 2009. Parent care continues to be the primary caregiving situation for mid-life caregivers with 70% of the caregivers between the ages of 50 and 64.
    [Wagner D. Takagi, E. Health Affairs: Informal Caregiving; By and for Older Adults, February 2010] - Updated: November 2012

  • A Gallup survey found 72% of caregivers cared for a parent, step-parent, mother-in-law, or father-in-law, and 67% of caregivers provided for someone age 75 or older.
    [Gallup Healthways Wellbeing Survey, Most Caregivers Look After Elderly Parent; Invest a Lot of Time, July 2011] - Updated: November 2012

  • Most care recipients live in their own home (58%), and one in five (20%) live in their caregiver's home.
    [National Alliance for Caregiving and AARP (2009), Caregiving in the U.S., A Focused Look at Those Caring for Someone Age 50 or Older, Bethesda, MD: National Alliance for Caregiving, Washington, D.C.] - Updated: November 2012

Caregivers: Who Do They Live With?
Lives Alone 43% (2009) 47% (2004)
Lives with Spouse 27% (2009) 26% (2004)
Lives with Grown Children 13% (2009) 11% (2004)
Lives with someone else 1% 1%

[National Alliance for Caregiving and AARP (2009), Caregiving in the U.S., A Focused Look at Those Caring for Someone Age 50 or Older, Bethesda, MD: National Alliance for Caregiving, Washington, D.C.] - Updated: November 2012
 

  • The close relationship between the caregiver and care recipient is a shared relationship with involved emotions, experiences, and memories, which can place a caregiver at higher risk for psychological and physical illness.
    [Alzheimer's Association, 2011 Alzheimer's Disease Facts and Figures, Alzheimer's and Dementia , Vol.7, Issue 2.] - Updated: November 2012

  • A majority of caregivers (86%) care for a relative and more than any other of those relatives (36%) care for a parent and (14%) care for a friend, neighbor or another non-relative. 26% of caregivers care for their mother and 10% care for their father. One in seven caregivers care for their child (14%). One in twelve provides care to a parent-in-law (8%) or a grandparent or grandparent-in-law (8%). The typical care recipient is a female 61 years of age.
    [The National Alliance for Caregiving and AARP (2009), Caregiving in the U.S: National Alliance for Caregiving. Washington, D.C.] - Updated: November 2012

  • Caregivers who care for a loved one with emotional or mental health issues are more likely to have made work accommodations (77% vs. 67% of those caring for someone with no emotional or mental health issues.
    [The National Alliance for Caregiving and AARP (2009), Caregiving in the U.S: National Alliance for Caregiving. Washington, D.C.] - Updated: November 2012

Worklife

  • More than one in six Americans working full or part time report assisting with the care of an elderly or disabled family member, relative, or friend. Caregivers working at least 15 hours per week said it significantly affected their worklife.
    [Gallup Healthways Wellbeing Survey, More Than One in Six American Workers Also Act as Caregivers, July 2011] - Updated: November 2012

  • American caregivers are a diverse population with between 13% and 22% of workers juggling a caregiving role with working. 22% of workers caring are middle-aged and 13% are age 18 to 29.
    [Gallup Healthways Wellbeing Survey, More Than One in Six American Workers Also Act as Caregivers, July, 2011] - Updated: November 2012

RESPONDENT PROFILE 18+ CARING for 50+
Employment Status % of All Caregivers
Employed full-time 50%
Employed part-time 11%
Retired 17%
* Chart is compilation of data from caregiving in the US

[National Alliance for Caregiving and AARP (2009), Caregiving in the U.S., A Focused Look at Those Caring for Someone Age 50 or Older, Bethesda, MD: National Alliance for Caregiving, Washington, D.C.]- Updated: November 2012

Impact on Working Caregivers

  • 70% of working caregivers suffer work-related difficulties due to their dual caregiving roles.
    [The National Alliance for Caregiving and AARP (2009), Caregiving in the U.S: National Alliance for Caregiving. Washington, D.C.] - Updated: November 2012

  • Among working caregivers caring for a family member or friend, 69% report having to rearrange their work schedule, decrease their hours or take an unpaid leave in order to meet their caregiving responsibilities.
    [Valuing the Invaluable: 2011 Update: The Economic Value of Family Caregiving. AARP Public Policy Institute.]- Updated: November 2012

  • 5% turned down a promotion, 4% chose early retirement and 6% gave up working entirely. Difficulties due to work and caregiving are even more challenging among those caring for someone with dementia.
    [National Alliance for Caregiving and AARP (2009), Caregiving in the U.S., A Focused Look at Those Caring for Someone Age 50 or Older, Bethesda, MD: National Alliance for Caregiving, Washington, D.C.] - Updated: November 2012

  • Caregivers suffer loss of wages, health insurance and other job benefits, retirement saving or investing, and Social Security benefits-- losses that hold serious consequences for the "career caregiver." A reported 37% of caregivers quit their jobs or reduced their work hours to care for someone 50+ in 2007.
    [AARP Public Policy Institute 2008: Valuing the Invaluable: The Economic Value of Family Caregiving] - Updated: November 2012

  • 10 million caregivers over 50 who care for their parents lose an estimated $3 trillion in lost wages, pensions, retirement funds and benefits. The total costs are higher for women who lose an estimated $324,044 due to caregiving, compared to men at $283,716. Lost wages for women who leave the work force early because of caregiving responsibilities equals $142,693, and for lost Social Security benefits an estimated $131,351, and pensions an estimated $50,000.
    [MetLife Mature Market Group. (June 2010) and National Alliance for Caregiving, Study of Working Caregivers and Employer Health Costs: Double Jeopardy for Baby Boomers Caring for their Parents] - Updated: November 2012

Impact on Working Female Caregivers

  • Working women caregivers may suffer a particularly high level of economic hardship due to their caregiving. Female caregivers are more likely than males to have made alternate work arrangements: taking a less demanding job (16% females vs. 6% males), giving up work entirely (12% vs. 3%), and losing job related benefits (7% females vs. males 3%).
    [The National Alliance for Caregiving and AARP (2009), Caregiving in the U.S: National Alliance for Caregiving. Washington, D.C.] - Updated: November 2012

  • Predominately single women caring for their elderly parents are 2.5 times more likely than non-caregivers to live in poverty in old-age.
    [Donato, Katherine and Wakabayashi, Chizuko: Women Caregivers are More Likely to Face Poverty, Sallyport, Magazine of Rice University. 61(3). Spring 2005, WISER 2012.] - Updated: November 2012

  • 70% of working caregivers made some job change to accommodate their caregiving role. 12% of caregivers reduced work hours or took a less demanding job while 9%, gave up work entirely, compared to 3% that took an early retirement.
    [The National Alliance for Caregiving and AARP (2009), Caregiving in the U.S., Bethesda, MD: National Alliance for Caregiving. Washington, D.C.] - Updated: November 2012

  • The 2008 economic downturn had a harsh effect on the working family caregiver. A study found that six in ten caregivers expressed they are less comfortable with risking taking time off from work to care for a family member or friend-50% and 51% indicated that more stress around their needing to care for a loved one when faced with increased work challenges.
    [The National Alliance for Caregiving and AARP (2009), Caregiving in the U.S. National Alliance for Caregiving. Washington, D.C.] - Updated: November 2012

  • Employed caregivers were less willing than non-caregivers to risk taking time off from work, 50% sought an additional job and 33% sought a job to cover caregiving costs.
    [Valuing the Invaluable: 2011 Update, The Economic Value of Family Caregiving. AARP Public Policy Institute. ]- Updated: November 2012

Annual Income

  • The lower the income and education, the more likely he or she is to be a caregiver. Similarly, those with a high school education or less (20%) take on a caregiver role verses (15%) of college graduates and (16%) of postgraduates.
    [Gallup Healthways Wellbeing Survey, More Than One in Six American Workers Also Act as Caregivers, July, 2011] - Updated: November 2012

Impact on Employers

  • Absenteeism costs the U.S. economy an estimated $25.2 billion in lost productivity (based on the average number of work days missed per working caregiver, assuming $200 in lost productiviety per day.)
    [Gallup Healthways Wellbeing Survey, Caregiving Costs U.S. Economy $25.2 Billion in Lost Productivity, July, 2011] - Updated: November 2012

  • Of those providing care, 24% say caring for an aging family member, relative, or friend has an impact on their work performance, and it keeps them from working more hours.
    [Gallup Healthways Wellbeing Survey, Caregiving Costs U.S. Economy $25.2 Billion in Lost Productivity, July 2011] - Updated: November 2012

  • Caregivers overall reported missing an average of 6.6 workdays per year. Approximately 17% of full-time workers missed 126 million workdays each year. 36% of caregivers missed 1-5 days per year while 30% reported missing 6 or more days in the past year.
    [Gallup Healthways Wellbeing Survey, More Than One in Six American Workers Also Act as Caregivers, July, 2011] - Updated: November 2012

  • Caregiving has shown to reduce work productivity by 18.5% and increase the likelihood of leaving the workplace.
    [Coughlin, J., (2010). Estimating the Impact of Caregiving and Employment on Well-Being: Outcomes & Insights in Health Management, Vol. 2; Issue 1] - Updated: November 2012

  • One third of working caregivers are working professionals and another 12% are in service or management roles. 71% indicate their employer knows about their caregiving status and 28% reported unaware. When surveyed about workplace programs approximately one-quarter or less stated they have access to employer-sponsored support (e.g. support group discussions, ask-a-nurse type services, financial or legal consultation, and assisted living counselors.
    [Gallup Healthways Wellbeing Survey, Caregiving Costs U.S. Economy $25.2 Billion in Lost Productivity, July, 2011] - Updated: November 2012

  • The cost of informal caregiving in terms of lost productivity to U.S. businesses is $17.1 to $33 billion annually. Costs reflect absenteeism ($5.1 billion), shifts from full-time to part-time work ($4.8 billion), replacing employees ($6.6 billion), and workday adjustments ($6.3 billion).
    [MetLife Study of Working Caregivers and Employer Health Costs: National Alliance for Caregiving. 2010] - Updated: November 2012

Best Practices for Removing Barriers to Equal Employment

  • Recommended are six key employer practices: (1) Adopt a policy to value caregiving employees based on job performance, rather than holding them to outdated assumptions that they are not committed to their jobs. (2) Workplace flexibility provides alternate work arrangements: Flex-time, Compressed workweeks, (i.e., working 10 hour days), Part-time or working fewer hours for part of the year, and telecommuniting. (3) For hourly employees on stricter schedules, do away with no-fault absenteeism policies that provide termination based on number of tardies or absences no matter the reason. (4) Provide education and training to supervisors and managers on having caregivers on the job and what constitutes caregiver discrimination. (5) Offer eldercare support, resources, and referral services to employees with caregiving responsibilities. The benefits to employers are worker retention, improved productivity, lower stress, improved moral and physical health among workers. (6) Implement recruitment practices for people with eldercare responsibilities to target the hiring of skilled individuals with caregiving responsibilities or who are looking to reenter the job market after caring.
    [Protecting Family Caregivers from Employment Discrimination AARP Caregiving (August, 2012 ) Joan C. Williams, Robin Devaux, and Patricia Petrac, Center for Work Life Law, University of California, Hastings College of the Law, Lynn Feinberg, AARP Public Policy Institute].- Updated: November 2012

  • Practices suggested in a Gallup poll were (1) provide an employee assistance plan to promote discussions about emotional distress experienced by the working caregiver; (2) access to health counselors or "ask a nurse" for information on the care receiver's condition; (3) provide counselors or others to make referrals, and give advice about assisted living or answer nursing home questions including how to pay for it.
    [Gallup Healthways Wellbeing Survey, Caregiving Costs U.S. Economy $25.2 Billion in Lost Productivity, July, 2011] - Updated: November 2012

Time Spent Caregiving

Hours per week

  • On average, caregivers spend 20.4 hours per week providing care. Those who live with their care recipient spend 39.3 hours per week caring for that person. Those caring for a child under age 18 spend 29.7 hours per week.
    [The National Alliance for Caregiving and AARP (2009), Caregiving in the U.S: National Alliance for Caregiving. Washington, D.C.] - Updated: November 2012

  • Older caregivers who are 65+ provide 31 hours in an average week on caregiving; middle aged caregivers report spending 19 hours. Older caregivers are more likely than younger caregivers to bathe and shower the care recipient (33% vs. 22%).
    [National Alliance for Caregiving and AARP (2009), Caregiving in the U.S., A Focused Look at Those Caring for Someone Age 50 or Older, Bethesda, MD: National Alliance for Caregiving, Washington, D.C.] - Updated: November 2012

  • In 2010, 14.9 million families and other unpaid caregivers of people with Alzheimer's disease and other dementias provided about 17 billion hours of unpaid care. This represents an average of 21.9 hours of caregiving per week, or 1,139 hours of care per caregiver valued annually at $11.93 per hour- an estimated $202.6 billion in 2010.
    [Alzheimer's Association, 2011 Alzheimer's Disease Facts and Figures, Alzheimer's and Dementia , Vol.7, Issue 2.] - Updated: November 2012

Months & Years Providing Care

  • Measured by duration of care, Alzheimer's and dementia caregivers, provide care on average one to four years more than caregivers caring for someone with an illness other than Alzheimer's disease (43% vs. 33%). They are also more likely to be providing care for five years or longer (32% vs. 28%).
    [Alzheimer's Association, 2011 Alzheimer's Disease Facts and Figures, Alzheimer's and Dementia , Vol.7, Issue 2.] - Updated: November 2012

  • The average duration of a caregiver's role is 4.6 years. Only 3 in 10 caregivers provided care for less than a year. Similarly, caregivers cared for a loved one for 1 to 4 years, and 3 in 10 caregivers cared for 5 years or more with 15% reporting caring for 10 or more years.
    [The National Alliance for Caregiving and AARP (2009), Caregiving in the U.S. National Alliance for Caregiving. Washington, D.C.] - Updated: November 2012

  • Caregivers regardless of employment status, report that positive activities in their daily life is reduced by 27.2% as a result of caregiving responsibilities, and the effect on their personal life is 3 times more than the effect on employment.
    [Coughlin, J., (2010). Estimating the Impact of Caregiving and Employment on Well-Being: Outcomes & Insights in Health Management, Vol. 2; Issue 1] - Updated: November 2012

LENGTH OF TIME CARING PERCENTAGE
Less then 6 months 4%
6 months to 1 year 10%
1 year to less than 2 14%
2 to less than 3 years 17%

[Gallup Healthways Wellbeing Survey, Most Caregivers Look After Elderly Parent; Invest a Lot of Time, July 2011] - Updated: November 2012

Geographic Distance Between Caregiver and Care Recipient

  • The majority of caregivers (72%) live within twenty minutes of the care recipient. 13% live within an hour of the care recipient, a decline from 19% in 2004.
    [National Alliance for Caregiving and AARP (2009), Caregiving in the U.S., A Focused Look at Those Caring for Someone Age 50 or Older, Bethesda, MD: National Alliance for Caregiving, Washington, D.C.] - Updated: November 2012

  • As the age of the caregiver increases, they are more likely to report living with their care recipient. More than one-third, (37%) of older caregivers live with their recipient compared to one in five (20%), of middle-aged and about one in six (14%) of younger caregivers.
    [National Alliance for Caregiving and AARP (2009), Caregiving in the U.S., A Focused Look at Those Caring for Someone Age 50 or Older, Bethesda, MD: National Alliance for Caregiving, Washington, D.C.] - Updated: November 2012

  • The proportion of caregivers reporting they live less than 20 minutes from the home of the person they provide care for has increased during the past five years (44% to 51% in 2009). Some attribute this to the 2008 recession.
    [National Alliance for Caregiving and AARP (2009), Caregiving in the U.S., A Focused Look at Those Caring for Someone Age 50 or Older, Bethesda, MD: National Alliance for Caregiving, Washington, D.C.] - Updated: November 2012

  • Long-distance caregivers had the highest annual expenses ($8,728) compared to co-resident caregivers ($5,885) or those who cared for a loved one nearby ($4,570).
    [AARP Public Policy Institute Valuing the Invaluable: 2008 Update. The Economic Value of Family Caregiving] - Updated: November 2012

  • A Gallup poll shows caregivers who do not live with their care receiver live the following distances from those for whom they care.

10 miles or less 66%
11-25 miles 13%
26 miles or more 21%

[Gallup Healthways Wellbeing Survey, Caregiving Costs U.S. Economy $25.2 Billion in Lost Productivity, July 2011] - Updated: November 2012
 

Impact of Caregiving on Caregiver's Physical Health

  • While researchers have long known that caregiving can have deleterious mental health effects for caregivers, research shows that caregiving can have serious physical health consequences as well, 17% of caregivers feel their health in general has gotten worse as a result of their caregiving responsibilities.
    [AARP Public Policy Institute Valuing the Invaluable: 2008 Update. The Economic Value of Family Caregiving] - Updated: November 2012

  • Research shows an estimated 17-35% of family caregivers view their health as fair to poor.
    [Valuing the Invaluable: 2011 Update, The Economic Value of Family Caregiving. AARP Public Policy Institute.] - Updated: November 2012

  • Those who are more likely to rate physical strain of caregiving "high" are female (17% vs. 10% males) and older (21% are 65+ vs. 11% at 18-49). They have lower incomes (19% vs. 11% of those with an annual income of $50,000+), a higher level of burden (31% vs. 9%, of those with a moderate level of burden and 5% of those with a low level), and are living with their care recipient (29% vs. 11% who don't live together).
    [National Alliance for Caregiving and AARP (2009), Caregiving in the U.S., A Focused Look at Those Caring for Someone Age 50 or Older, Bethesda, MD: National Alliance for Caregiving, Washington, D.C.] - Updated: November 2012

  • 11% of family caregivers report that caregiving has caused their physical health to deteriorate.
    [The National Alliance for Caregiving and AARP (2009), Caregiving in the U.S. National Alliance for Caregiving. Washington, DC.] - Updated: November 2012

  • 21% of older caregivers caring for those 65+ report a higher degree of physical strain, compared to 13% who are younger.
    [The National Alliance for Caregiving and AARP (2009), Caregiving in the U.S: National Alliance for Caregiving. Washington, D.C.] - Updated: November 2012

  • Women (16%) more than men (11%) report having more stress in caregiving responsibilities, (4-5 on a 5 point scale).
    [The National Alliance for Caregiving and AARP (2009), Caregiving in the U.S: National Alliance for Caregiving. Washington, D.C.] - Updated: November 2012

Physical Health of Full-time Workers

  • Negative effects of caregiving are greatest for those aged 18-29, followed by 30 to 40 year olds. Caregivers who work full-time say they suffer from poorer physical health than their non-caregiving counterparts. 16% of caregivers working full-time have a Physical Health Index (PHI) score of 77.4%, which is significantly lower than 83.0% for non-caregivers (Findings are based on Gallup-Healthways Well-Being Index).
    [Gallup Healthways Wellbeing Survey, In U.S., Caregivers Suffer From Poor Physical Health, Febuary 2011] - Updated: November 2012

Physical Health Index by Age:

  CAREGIVERS NON-CAREGIVERS DIFFERENCE
TOTAL 77.4 83.0 -5.6
18-29 79.0 85.7 -6.7
30-40 72.2 83.3 -6.1
45-64 77.0 81.5 -4.5
65+ 79.1 81.8 -2.7

[Gallup Healthways Wellbeing Survey, In U.S., Caregivers Suffer From Pooer Physical Health, Febuary 2011] - Updated: November 2012

Mental and Emotional Effects of Caregiving Experienced by Caregivers

  • Caregivers working full-time who are younger than 45 showed the greatest emotional health deficit relative to non-caregivers, as the same with physical and well-being.
    [Gallup Healthways Wellbeing Survey, In U.S., Caregivers' Emotional Health Often Suffers, May 2011] - Updated: November 2012

Emotional Health Index by Age:

  CAREGIVERS NON-CAREGIVERS DIFFERENCE
TOTAL 78.0 81.9 -3.9
18-29 78.2 82.3 -4.1
30-40 77.0 81.1 -4.1
45-64 78.1 81.9 -3.8
65+ 84.1 87.0 -2.9

[Gallup Healthways Wellbeing Survey, In U.S., Caregivers' Emotional Health Often Suffers, May 2011] - Updated: November 2012

  • The well-being index composite score for working caregivers was also significantly lower than the 70.2 among non-caregivers.
    [Gallup Healthways Wellbeing Survey, In U.S., Working Caregivers Face Well-being Challenges, December 2011] - Updated: November 2012

  • Caring for persons with dementia is reported to impact a person's immune system for up to 3 years after their caregiving experience ends, thus increasing their chances of developing a chronic illness themselves.
    [The National Alliance for Caregiving and AARP (2009), Caregiving in the U.S: National Alliance for Caregiving. Washington, D.C.] - Updated: November 2012

  • 40% to 70% of family caregivers have clinically significant symptoms of depression with about a quarter to half of these caregivers meeting the diagnostic criteria for major depression.
    [Zarit, S. (2006) Assessment of Family Caregivers: A Research Perspective in Family Caregiver Alliance (Eds.), Caregiver Assessment: Voices and Views from the Field. Report from a National Consensus Development Conference (Vol. II) (pp. 12-37). San Francisco: Family Caregiver Alliance.] - Updated: November 2012

  • Reports show there is a correlation between a caregiver's health and income. Of caregivers with less than $30,000 in household income, 34% report fair or poor health as compared with 3% of caregivers with $100,000 or more. The same pattern is also found with a caregiver's level of education.
    [The National Alliance for Caregiving and AARP (2009), Caregiving in the U.S: National Alliance for Caregiving. Washington, D.C.] - Updated: November 2012

  • Caregivers whose recipient has emotional or mental health problems are more likely than others to report a decline in their own health as a result (28% vs. 12%).
    [The National Alliance for Caregiving and AARP (2009), Caregiving in the U.S. National Alliance for Caregiving. Washington, DC.] - Updated: November 2012

  • One in twelve (8%) of caregivers feel their overall health is improved by caring for a loved one.
    [Zarit, S. (2006) Assessment of Family Caregivers: A Research Perspective in Family Caregiver Alliance (Eds.), Caregiver Assessment: Voices and Views from the Field. Report from a National Consensus Development Conference (Vol. II) (pp. 12 ? 37). San Francisco: Family Caregiver Alliance.] ? Updated: November 2012

  • 20% of employed female caregivers over 50+ report symptoms of depression compared to 8% of their non-caregiving peers.
    [MetLife: Still Out, Still Aging 2010. Study of Lesbian, Gay, Bisexual, and Transgender Baby Boomers] - Updated: November 2012

Economic Value and Costs of Informal Caregiving

  • At $450 billion in 2011, the value of informal caregiving exceeded the value of paid home care, more than total Medicaid spending in 2009, as much as Wal-Mart sales ($408 billion), and nearly exceeding total expenditures for the Medicaid program in 2009 ($509 billion).
    [Valuing the Invaluable: 2011 Update, The Economic Value of Family Caregiving. AARP Public Policy Institute.] - Updated: November 2012

  • The economic value of the care provided by family and other unpaid caregivers of those with Alzheimer's disease or other dementias was $202.6 billion in 2010.
    [National Alzheimer's Association, 2011 Alzheimer's Disease Facts and Figures, Alzheimer's & Dementia, Volume 7, Issue 2.] - Updated: November 2012

Older Adults with Developmental Disabilities

  • There are an estimated 641,000 adults aged 60 and older with intellectual (mental retardation) and other disabilities (e.g., cerebral palsy, autism, epilepsy & those with brain injury who qualify). Higher numbers are projected to double to 1,242,794 by 2030, coinciding with the population of aging baby boomers born between 1946 and 1964 that turned 65 on January 1, 2011. One age-related concern is providing support to the family caregivers who themselves are experiencing diminished capacity.
    [Heller, T., Ph.D., Strength for Caring. Older Adults with Developmental Disabilities and Their Aging Family Caregivers (2011] - Updated: November 2012

  • Families are still the primary caregivers for adults with developmental disabilities and are themselves aging. Approximately, 76% of individuals with developmental disabilities live at home and in 25% of these homes, the family caregiver was over age 60. Of these households, the average age of the individual with a developmental disability was age 38.
    [Heller, T., Ph.D., Strength for Caring. Older Adults with Developmental Disabilities and Their Aging Family Caregivers (2011] - Updated: November 2012

Caregiver Assistance/Support

  • 49% of caregivers reported use of at least one of three specific types of help on behalf of their care recipient. Most commonly used was an outside transportation service (29%), followed by requesting resources for financial assistance (28%). Only 12% have used a respite service. Caregivers of adults ages 18 to 49 are more likely to have sought out financial help (44%), than those caring for older (25%) or younger (32%) recipients.
    [National Alliance for Caregiving and AARP (2009), Caregiving in the U.S: National Alliance for Caregiving, and Washington, DC: AARP.] - Updated: November 2012

  • One in five caregivers report having had training (19%) but seek additional resources. 78% report needing more help and information with at least 14 specific topics related to caregiving. Caregivers in high burden situations are more likely to seek help (83% vs. 73% of low burden caregivers). The top three topics of concern to caregivers are: keeping their loved one safe (37%); managing their own stress (34%); finding easy activities to do with their care recipient (34%); and finding time for themselves. The demand for information by caregivers has increased in the last five years (77% vs. 67% in 2004). But in 2009, caregivers who expressed a desire to find more time for themselves decreased (30% vs. 35% in 2004).
    [The National Alliance for Caregiving and AARP (2009), Caregiving in the U.S., Bethesda, MD: National Alliance for Caregiving. Washington, D.C.] - Updated: November 2012

  • Caregivers responded positively to interventions such as individual/group therapy, educational/training support, home-based visits or technology, depending on how they are delivered.
    [National Alzheimer's Association, 2011 Alzheimer's Disease Facts and Figures, Alzheimer's & Dementia, Volume 7, Issue 2.] - Updated: November 2012

  • 66% of caregivers find it very or somewhat easy to coordinate care given by health professionals and service providers while 25% had some difficulty. Most caregivers report using other unpaid caregiver help (66%), and 35% used paid help.
    [The National Alliance for Caregiving and AARP (2009), Caregiving in the U.S., Bethesda, MD: National Alliance for Caregiving. Washington, D.C.] - Updated: November 2012

  • Transportation is a vital component provided by the family caregiver (spouses, adult children); 39% of Medicare beneficiaries accompany care recipients to medical appointments. Family or friends provide transportation for 1.4 billion visits per year for older relatives (70+) who do not drive themselves.
    [Valuing the Invaluable: 2011 Update: The Economic Value of Family Caregiving. AARP Public Policy Institute.] - Updated: November 2012

Technology

Who is most receptive to caregiving technology?

  • Caregivers are significantly more likely than other internet users to say that their last search for health information was on behalf of someone else: 67% vs. 54%. Just 29% of online caregivers say their last search was solely focused on their own health or medical situation, compared with 40% of non-caregivers who go online for health information.
    [Pew Research Center's Internet & American Life Project, Family Caregivers Online, July 2012. Caregivers in the U.S. (main report)]- Updated: November 2012

  • Most people say that the last time they had a health issue, they got information, care, or support from a doctor or other health professional, either online or offline. Fully 78% of caregivers say that, compared with 66% of non-caregivers.
    [Pew Research Center's Internet & American Life Project. Caregivers are Active Health Care Consumers, July 2012 (main report)]- Updated: November 2012

  • Caregivers under the age of 50 are more likely than older adults to use the benefits of caregiving technology. Early adopters of technology report they would likely try each of the technologies available, but cost was a concern. Racial and ethnic minorities ages 50 and older are more likely than non-minority caregivers of the same age to rate technology as helpful. Among younger caregivers no difference was noted by race. Caregivers with a medium to high burden of care are more likely than those with a low burden of care to use technology.
    [e-connected Family Caregiver: Bringing Caregiving into the 21st Century (2011. National Alliance for Caregiving with United Health Care)]- Updated: November 2012

  • The most important technological benefits reported by caregivers are saving time (77%), caregiving made easier logistically (76%), making the care recipient feel safer (75%), increasing their feelings of being effective (74%), and reducing stress (74%).
    [e-connected Family Caregiver: Bringing Caregiving into the 21st Century. National Alliance for Caregiving with United Health Care (2011)]- Updated: November 2012

  • Caregivers are most receptive to technologies that help them deliver, monitor, track, or coordinate their loved one's medical care.
    [e-connected Family Caregiver: Bringing Caregiving into the 21st Century. National Alliance for Caregiving with United Health Care (2011)]- Updated: November 2012

  • A Pew Research Center study found that family caregivers are more technologically savvy than the general population. 90% of family caregivers have a cell phone, compared to 82% of non-caregivers, and 79% of family caregivers have access to the internet, a higher percentage than non-caregivers, even when controlled for age, educational level, and other demographic factors. Caregivers largely use the internet to assist with their caregiving responsibilities through connecting with other caregivers, researching health information, such as data on Alzheimer's and dementia, and looking up information about long-term care options.
    [Pew Research Center's Pew Internet & American Life Project, July 2012: Family Caregivers Online, July 2012]- Updated: November 2012

Caregivers are social

  • Caregivers are more likely than other internet users to take advantage of social tools related to health: 44% of online caregivers have read someone else's personal health story online, compared with 29% of non-caregivers. 28% of online caregivers who use sites like Facebook have followed their friends' personal health experiences or health updates, compared with 21% of non-caregivers who use such sites.
    [Pew Research Center's Pew Internet & American Life Project, July 2012: Family Caregivers Online, July 2012]- Updated: November 2012

  • 26% of online caregivers have looked online for someone with similar health concerns, compared with 15% of non-caregivers. Caregivers are also more likely to tap into their offline social networks when they need health information, care, or support.
    [Pew Research Center's Pew Internet & American Life Project, July 2012: Family Caregivers Online, July 2012]- Updated: November 2012

Where do caregivers seek help for a health issue?

  • 70% of caregivers say they turned to friends and family members for information, care, or support, compared with 47% of non-caregivers who did the same. 28% of caregivers say they turned to others who have the same health condition, compared with 17% of non-caregivers who did so, either online or offline.
    [Pew Research Center's Pew Internet & American Life Project: Family Caregivers Online: The Internet is an Integral Part of the Lives of People who Care for Loved Ones, July 2012] - Updated: November 2012

Caregivers are active health care consumers

  • 38% of online caregivers have consulted online reviews of particular drugs or medical treatments, compared with 18% of non-caregivers. 21% of online caregivers have consulted online rankings or reviews of doctors or other providers, compared with 13% of non-caregivers. 20% of online caregivers have consulted online rankings or reviews of hospitals or other medical facilities, compared with 12% of non-caregivers.
    [Pew Research Center's Pew Internet & American Life Project: Family Caregivers Online: The Internet is an Integral Part of the Lives of People who Care for Loved Ones, July 2012] - Updated: November 2012

Veterans

  • 9 in 10 (96%) of caregivers of veterans are female and 70% provide care to their spouse or partner. 30% of veterans caregivers care for a duration of 10 years or more as compared to 15% of caregivers nationally. 88% report increased stress or anxiety as a result of caregiving, and 77% state sleep deprivation as an issue.
    [National Alliance for Caregiving and United Health Foundation, Caregivers of Veterans: Serving on the Home Front (2010)]- Updated: November 2012

  • Veterans suffer more frequently from Traumatic Brain Injury (29%), Post-traumatic Stress Disorder, Diabetes (28%), and paralysis or Spinal Cord Injury (20%).
    [National Alliance for Caregiving and United Health Foundation, Caregivers of Veterans: Serving on the Home Front (2010)]- Updated: November 2012

This fact sheet revision was produced by Family Caregiver Alliance with funding provided by the Administration on Aging (AoA). Copyright © 2012 Family Caregiver Alliance. All rights reserved.

Date: 
Monday, December 31, 2012

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