E-mail to a Friend

  Printable Version

Definitions

The term caregiver refers to anyone who provides assistance to someone else who is, in some degree, incapacitated and needs help: a husband who has suffered a stroke; a wife with Parkinson’s disease; a mother-in-law with cancer; a grandfather with Alzheimer’s disease; a son with traumatic brain injury from a car accident; a child with muscular dystrophy; a friend with AIDS.

Informal caregiver and family caregiver are terms that refer to unpaid individuals such as family members, friends and neighbors who provide care. These individuals can be primary or secondary caregivers, full time or part time, and can live with the person being cared for or live separately. Formal caregivers are volunteers or paid care providers associated with a service system.^1,2  Figures reflected in this Fact Sheet are national in scope and focus primarily on unpaid caregivers for adults.

For additional information, see FCA’s Fact Sheet on Selected Long-Term Care Statistics.

Who Are the Informal Caregivers?

Magnitude

• There is wide latitude in the estimates of the number of informal caregivers in the U.S., depending on the definitions and criteria used. See citations below for source information.
  
  • 52 million informal and family caregivers provide care to someone aged 20+ who is ill or disabled.³
  • 29.2 million family caregivers provide personal assistance to adults (aged 18+) with a disability or chronic illness.⁴
  • 34 million adults (16% of population) provide care to adults 50+ years.⁵
  • 8.9 million caregivers (20% of adult caregivers) care for someone 50+ years who have dementia.⁶
  • 5.8 ⁷ - 7 ⁸ million people (family, friends and neighbors) provide care to persons 65+ who need assistance with everyday activities.⁹
  • Unpaid family caregivers will likely continue to be the largest source of long-term care services in the U.S. and are estimated to reach 37 million caregivers by 2050, an increase of 85% from 2000.¹⁰

Gender

• More women than men are caregivers. An estimated 59% to 75% of caregivers are female.^11,12,13
• Research suggests that the numbers of male caregivers may be increasing and will continue to do so due to a variety of social demographic factors.¹⁴ One report documents a 50% increase in men becoming primary caregivers between 1984 and 1994.¹⁵
• While men may be sharing in caregiving tasks more than in the past, 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 50% more time providing care than male caregivers.¹⁶ However, among caregivers 75+, both sexes provide equal amounts of care.¹⁷
• Other studies have found that women caregivers handle the most difficult caregiving tasks (i.e., bathing, toileting and dressing) when compared with their male counterparts who are more likely to help with finances, arrange care, and other less burdensome tasks.^18,19
• A number of studies have found that female caregivers are more likely than males to suffer from anxiety, depression, and other symptoms associated with emotional stress due to caregiving.^20,21

Age

• While caregivers can be found across the age span, the majority of caregivers are middle-aged (35-64 years old).^22,23
• The average age of family caregivers caring for someone aged 20+ has been estimated at 43.²⁴
• Of those caring for someone aged 50+, the average age of family caregivers is estimated at 47.²⁵
• Many caregivers of older people are themselves elderly. Of those caring for someone aged 65+, the average age of caregivers is 63 years with one third of these caregivers in fair to poor health.²⁶
• Similarly, it has been shown that the number of hours dedicated to caregiving increases with the age of the caregiver:²⁷

Ethnicity ²⁸

• Rates of caregiving vary somewhat by ethnicity. Among the U.S. adult population (18+), approximately one-fifth (21%) of both the white and African-American populations are providing informal care, while a slightly lower percentage of Asian-Americans (18%) and Hispanic-Americans (16%) are engaged in caregiving.²⁹
• However, in another national survey which looked only at people 70+ years old, 44% of Latinos were found to receive informal home care compared to 34% of African-Americans and 25% of non-Hispanic whites.³⁰
• Studies show that ethnic minority caregivers provide more care than their white counter-parts ^31,32 and report worse physical health than white caregivers.³³
• African-American caregivers experience less stress and depression and get more rewards related to caregiving when compared to white caregivers.^34,35,36 However, Hispanic and Asian-American caregivers exhibit more depression than white caregivers.³⁷
• Ethnic differences are also found with regard to the care recipient. Among people aged 70+ who require care, whites are the most likely to receive help from their spouses; Hispanics are the most likely to receive help from their adult children; and African Americans are the most likely to receive help from a nonfamily member.³⁸

Relationships between Caregivers and Care Recipients

• The person most likely to be providing care to an older person is an adult child:

Relationship to Older Person	% of All Caregivers (caring for person 65+)39	% of All Caregivers (caring for person 50+)40
Child	41%	44%
Spouse	23%	6%
Other relative	27%	24%
Nonrelative	8%	14%

• As can be seen from the chart above, as care recipients age, there is a much higher likelihood of receiving care from a spouse. Nearly one-quarter (22%) of caregivers who are themselves 65+ are caring for a spouse.⁴¹
• Some studies have found that a significant percentage of caregivers, 17%⁴² to 24%,⁴³  are caring for a friend or neighbor as opposed to a family member.
• In a national sample of caregivers who live with their care recipients, spouses account for about 62% of primary caregivers while adult children comprise 26%. Secondary caregivers are more likely to be adult children (46%) than spouses (16%).⁴⁴

Employment Status

• A significant portion of those in the workforce are also providing elder care to family members. Between 25% to 35% of all workers report that they are currently providing, or have recently provided, care to someone 65+.^45,46
• Most caregivers are employed. Among baby boomer caregivers (aged 50-64 years old), an estimated 60% are working full or part-time.⁴⁷ Among adult caregivers generally, the majority are employed:⁴⁸

Employment Status	% of All Caregivers
Employed full-time	48%
Employed part-time	11%
Retired	16%
Not employed	9%

• Working caregivers often suffer many work-related difficulties due to their dual caregiving roles. Among working caregivers caring for a family or friend aged 65+, two-thirds report having to rearrange their work schedule, decrease their hours or take an unpaid leave in order to meet their caregiving responsibilities.⁴⁹Difficulties due to work and caregiving are even higher among those caring for someone with dementia.⁵⁰
• Working women caregivers may suffer a particularly high level of economic hardships due to their caregiving. Women caregivers are likely to spend 12 years out of the workforce raising children and caring for an older relative or friend.⁵¹ One recent study found that women who had assumed caregiver roles during their working years were 2.5 times more likely to live in poverty when they became elderly compared to women who had not been caregivers during their lifetime.⁵²

Time Spent Caregiving

Hours per Week

• Nearly half of caregivers provide fewer than eight hours of care per week, while nearly one in five provide more than 40 hours of care per week.⁵³
• Older caregivers often spend the most hours providing care.⁵⁴ Nearly one-third (28%) of caregivers who provide more than 40 hours of care per week are 65+ years.⁵⁵
• The amount of time spent caring increases substantially as cognitive impairment worsens. Among people 70+ years old, those with no dementia receive an average of 4.6 hours per week of care, while those with mild dementia receive 13.1 hours of care weekly. For persons with severe dementia, hours of informal care received rises to 46.1 hours per week.⁵⁶ Similarly, nearly one-quarter (23%) of caregivers of someone 50+ with some type of dementia provide 40+ hours of care per week compared to 16% of those helping someone 50+ without dementia.⁵⁷
• A study of California Caregiver Resource Center caregiving clients indicates that the average number of hours of care per week is 81.⁵⁸

Years Providing Care

• The duration of caregiving can last from less than a year to more than 40 years. In a 2003 study, caregivers were found to spend an average of 4.3 years providing care.⁵⁹ In another national study, over 40% of caregivers had been providing assistance for 5 or more years, and nearly one-fifth had been doing so for 10+ years.⁶⁰
• Older caregivers (50+) are more likely to have been caregiving for more than 10 years (17%) when compared to younger caregivers (9%).⁶¹

Geographic Distance between Caregiver and Care Recipient

• The majority of caregivers (42%) live within twenty minutes of the care recipient. One-quarter of care recipients (24%) live with the caregiver and another one-fifth (19%) live within an hour of the care recipient. The remaining 15% of caregivers live more than an hour from the care recipient.⁶²
• Estimates of the number of long-distance caregivers in the U.S. who are caring for an older relative range from 5.1⁶³ to nearly 7 million.⁶⁴ Long-distance caregivers are generally defined as living more than one hour from the older adult needing assistance.
• Estimates of travel time for long-distance caregivers to visit the care recipient range from 4 hours⁶⁵  to 7.23 hours.⁶⁶

Impact of Caregiving on Caregivers’ 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.
• Studies have found that caregivers may have increased blood pressure and insulin levels,⁶⁷  may have impaired immune systems⁶⁸ and may be at increased risk for cardiovascular disease⁶⁹ among other adverse health outcomes.
• A study of elderly spousal caregivers (aged 66-96) found that caregivers who experience caregiving-related stress have a 63% higher mortality rate than noncaregivers of the same age.⁷⁰
• Many caregivers are themselves in poor health; studies show that approximately one-third of caregivers provide intensive care although they are themselves in “fair to poor” physical health.^71,72

Mental and Emotional Effects of Caregiving Experienced by Caregivers

• Psychological health appears to be the aspect of the family caregiver’s life that is most affected by providing care. Studies consistently report higher levels of depressive symptoms and mental health problems among caregivers than among their noncaregiving peers.⁷³
• Depression appears to be the most common psychological disorder, with 20% to 50% of caregivers reporting depressive disorders or symptoms.^74,75 The higher levels of depression are mostly attributed to people caring for individuals with dementia. Studies show that 30%⁷⁶ to 40%⁷⁷ of dementia caregivers suffer from depression and emotional stress.
• Several studies have shown that caregivers use prescription and psychotropic drugs more than noncaregivers.⁷⁸
• Stress in family caregivers is inversely correlated to income: the less income a caregiver has, the more stress he or she is likely to experience.⁷⁹
• Particularly stressful caregiving situations may put caregivers at risk of engaging in harmful behaviors towards care recipients. One study has shown that spousal caregivers who are at risk of clinical depression and are caring for a spouse with significant cognitive impairment and/or physical care needs are more likely to engage in harmful behavior towards their loved one.⁸⁰
• While caregiving can be a very stressful situation for many caregivers, studies also show that there are beneficial effects, including feeling positive about being able to help a disabled spouse, feeling appreciated by the care recipient, and feeling that their relationship with the care recipient had improved.^81,82,83

Economic Value and Costs of  Informal Caregiving

• What is the estimated economic value of informal caregiving? If the services provided by informal caregivers (i.e. family, friends, neighbors) had to be replaced with paid services, it would cost an estimated $257 billion (in 2000 dollars).⁸⁴
• At the estimated value of $257 billion nationally, informal caregiving greatly exceeds the costs associated with home health care ($32 billion) and nursing home care ($92 billion) combined.⁸⁵
• Studies suggest that the cost of informal caregiving in terms of lost productivity to U.S. businesses is $11 to $29 billion annually.⁸⁶
• Caring for older persons with dementia (as opposed to caring for someone with a physical disorder) costs more than $18 billion a year in additional time spent by family and friends.⁸⁷
• One study of community-residing Alzheimer’s disease care recipients found that on average each care recipient receives $23,436 worth of informal care from family and friends. In comparison, only $8,064 of professional home care services per year are used by care recipients.⁸⁸
• As a result of their caregiving, informal caregivers are estimated to each lose an average of $25,494 in Social Security benefits, an average of $67,202 in pension benefits and an average of $566,433 in wage wealth. Combined, the result is a loss of $659,139 over a lifetime.^89,90
• Long-distance caregivers spend an average of $392/month on travel and out-of-pocket expenses as part of their caregiving duties.⁹¹

Caregiver Assistance/Support

• Most people who need long-term care depend exclusively on their family and friends. The vast majority of adults (78%) in the U.S. who receive long-term care at home get all their care
• from unpaid family and friends, mostly wives and adult daughters. Another 14% receive some combination of family care and paid help; only 8% rely on formal care alone.⁹²
• Forty-eight percent of caregivers reported using at least one of seven outside services (e.g., transportation, home-delivered meals, respite, etc.) to supplement their caregiving.⁹³
• Caregivers are often unaware of the availability of support services. One recent study of Alzheimer’s caregivers found that 75% had unmet needs; only 9% used respite services and only 11% participated in support groups.⁹⁴ A study of California caregivers similarly found that 75% did not know where to access services that they would have used.⁹⁵
• Caregiver interventions benefit both the caregiver and the care recipient. Use of caregiver support services has been shown to have clinically significant outcomes in improving caregiver
• depression, anxiety and anger.^96,97,98 Specific caregiver interventions which appear to be most beneficial include those that work with both the caregiver and the care recipient, those that emphasize behavioral skills training, and those that are both multi-component and tailored to caregivers’ specific needs.^99,100,101
• People with moderate dementia have been able to defer institutionalization by nearly a year when their family members receive caregiver support services, including counseling, information and ongoing support.¹⁰²
   

Notes

1 Fradkin, L.G. and A. Heath. Caregiving of Older Adults. Santa Barbara: ABC-CLIO, Inc., 1992.
2 McConnell, S. and J.A. Riggs. A Public Policy Agenda: Supporting Family Caregiving in Family Caregiving: Agenda for the Future, ed. M.A. Cantor, San Francisco: American Society on Aging, 1994.
3 Health and Human Services. Informal Caregiving: Compassion in Action. Washington, DC: Department of Health and Human Services. Based on data from the National Survey of  Families and Households (NSFH), 1998.
4 Arno, P. S. Well Being of Caregivers: The Economic Issues of Caregivers, in T. McRae (Chair), New Caregiver Research. Symposium conducted at the annual meeting of the American Association of Geriatric Psychiatry. Orlando, FL. Data from 1987/1988 National Survey of Families and Households (NSFH), 2002.
5 National Alliance for Caregiving and AARP. Caregiving in the U.S. Bethesda: National Alliance for Caregiving, and Washington, DC: AARP, 2004.
6 Alzheimer’s Association and National Alliance for Caregiving, Families Care: Alzheimer’s Caregiving in the United States. Chicago, IL: Alzheimer’s Association and Bethesda: National Alliance for Caregiving, 2004.
7 Spector, W. D. et al. The Characteristics of Long-Term Care Users. AHRQ Publication No. 00-0049. Rockville: Agency for Healthcare Research and Policy, 2000.
8 See note 3 above.
9 Both of these reports used data from the 1994 National Long-Term Care Survey. The Health and Human Services report also incorporated data from the 1982 National Long-Term Care Survey and the Informal Caregiver Supplement to the 1989 National Long-Term Care Survey.
10 Health and Human Services and Assistant Secretary for Planning and Evaluation. The future supply of long-term care workers in relation to the aging baby boom generation. Report to Congress. Washington, DC, 2003.
11 Ibid.
12 See note 3 above.
13 The Henry J. Kaiser Family Foundation (KFF), Harvard School of Public Health, United Hospital Fund of New York, and Visiting Nurse Service of New York. The Wide Circle of Caregiving: Key Findings from a National Survey: Long-Term Care from the Caregiver’s Perspective. Menlo Park: KFF, 2002.
14 Kramer, B. J., et al. Men as Caregivers. Amherst: Prometheus Books, 2002.
15 Spillman, B.C. and L.E. Pezzin. 2000. Potential and Active Family Caregivers: Changing Networks and the “Sandwich Generation.” The Milbank Quarterly 78:347-374.
16 See note 3 above.
17 McCann, J.J., L.E. Hebert, L.A. Beckett, M.C. Morris, P.A. Scherr, and D.A. Evans. 2000. Comparison of Informal Caregiving by Black and White Older Adults in a Community Population. Journal of the American Geriatrics Society 48:1612-1617.
18 See note 5 above.
19 Metlife Mature Market Institute. The Metlife Study of Sons at Work Balancing Employment and Eldercare. New York: Metropolitan Life Insurance Company, 2003.
20 Yee, J. L., and R. Schulz. 2000. Gender differences in Psychiatric Morbidity among Family Caregivers: A Review and Analysis. The Gerontologist 40:147-164.
21 Navaie-Waliser, M., A. Spriggs, and P.H. Feldman. 2002. Informal Caregiving: Differential Experiences by Gender. Medical Care 40:1249-1259.
22 See note 5 above.
23 Alecxih, L. M. B., S. Zeruld, and B. Olearczyl, Characteristics of Caregivers Based on the Survey of Income and Program Participation. Falls Church, VA: The Lewin Group, 2001. [National Family Caregiver Support Program: Selected Issue Briefs.]
24 See note 3 above.
25 See note 5 above.
26 Administration on Aging, NFCSP Complete Resource Guide, 9 September 2004, <http://www.aoa.gov/prof/aoaprog/caregiver/careprof/progguidance/resources/
nfcsp_resources_guide.asp> (1 March 2005).
27 Partnership for Solutions. Chronic conditions: Making the case for ongoing care. Baltimore: Johns Hopkins University, 2002.
28 The terminology used to describe ethnicities varies in this section as we chose to use the actual terminology used in the studies cited.
29 See note 5 above.
30 Weiss, C.O., H.M. Gonzalez, M.U. Kabeto, and K.M. Langa. 2005. Differences in Amount of Informal Care Received by Non-Hispanic Whites and Latinos in a Nationally Representative Sample of Older Americans. Journal of the American Geriatric Society 53:146-151.
31 See note 17 above.
32 Pinquart, M. and S. Sorenson. 2005. Ethnic Differences in Stressors, Resources, and Psychological Outcomes of Family Caregiving: A Meta-Analysis. The Gerontologist 45: 90-106.
33 Ibid.
34 Cuellar, N.G. 2002. Comparison of African American and Caucasian American Female Caregivers of Rural, Post-Stroke, Bedbound Older Adults. Journal of Gerontological Nursing 28: 36-45.
35 Haley, W.E., L.N. Gitlin, S.R. Wisniewski, D.F. Mahoney, D.W. Cood, L. Winter, M. Corcoran, S. Schinfeld, and M. Ory. 2004. Well-being, Appraisal, and Coping in African-American and Caucasian Dementia Caregivers: Findings from the REACH Study. Aging and Mental Health 8: 316-29.
36 See note 32 above.
37 Ibid.
38 National Academy on an Aging Society. Caregiving: Helping the Elderly with Activity Limitations. Challenges for the 21st century: Chronic and Disabling Conditions, No. 7. Washington, DC: National Academy on an Aging Society, 2000.
39 See note 7 above.
40 See note 5 above.
41 Ibid.
42 Ibid.
43 See note 3 above.
44 Kennedy, J., and C. Walls. A national profile of intra-household ADL/IADL assistants: Population estimates from the 1992 and 1993 Surveys of Income and Program Participation. Champaign: Department of Community Health, University of Illinois at Urbana, 1997.
45 Bond, J. T., E. Galinsky, and J. E. Swanberg. The 1997 National Study of the Changing Workforce. New York: Families and Work Institute, 1998.
46 Bond, J.T., C. Thompson, E. Galinsky, and D. Prottas. Executive summary: Highlights of the National Study of the Changing Workforce. New York: Families and Work Institute, 2002.
47 AARP. Beyond 50.03: A Report to the Nation on Independent Living and Disability. Washington DC: AARP, 2003.
48 See note 5 above.
49 See note 3 above.
50 See note 6 above.
51 Social Security Administration (SSA). Women and Social Security (Fact Sheet). Washington DC: SSA, 2002.
52 Wakabayashi, C. and K. M. Donato. 2004. The Consequences of Caregiving for Economic Well-Being in Women’s Later Life. Presented at the annual meeting of the American Sociological Association, San Francisco.
53 See note 5 above.
54 See note 27 above.
55 Ibid.
56 Langa K.M., M. Chernew, M. Kabeto, A.R. Herzog, M.B. Ofstedal, R. Willis, R. Wallace, L. Mucha, W. Straus, AM. Fendrick. 2001. National Estimates of the Quantity and Cost of Informal Caregiving for the Elderly with Dementia. Journal of General Internal Medicine 16: 770-778.
57 See note 6 above.
58 Family Caregiver Alliance. A 20-Year Partnership in Caring. San Francisco: Family Caregiver Alliance, 2005.
59 See note 5 above.
60 Donelan, K, C.A. Hill, C. Hoffman, K. Scoles, P.H. Feldman, C. Levine and D. Gould. 2002. Challenged to Care: Informal Caregivers in a Changing Health System. Health Affairs 21:222-231.
61 See note 5 above.
62 Ibid.
63 Ibid.
64 Wagner, D.L., Long-Distance Caregiving for Older Adults. Healthcare and Aging. Washington, DC: National Council on the Aging, 1997.
65 Ibid.
66 Metlife Mature Market Institute and National Alliance for Caregiving. Miles away: The Metlife study of Long-Distance Caregiving. Westport: Metlife Mature Market Institute and Bethesda: National Alliance for Caregiving, 2004.
67 Cannuscio, C.C., J. Jones, I. Kawachi, G.A. Colditz, L. Berkman and E. Rimm. 2002. Reverberation of Family Illness: A Longitudinal Assessment of Informal Caregiver and Mental Health Status in the Nurses’ Health Study. American Journal of Public Health 92:305-1311.
68 Kiecolt Glaser, Ja., and R. Glaser. Chronic Stress and Age-Related Increases in the Proinflammatory Cytokine IL-6. In proceedings of the National Academy of Sciences, 2003.
69 Lee, S, G.A. Colditz, L. Berkman, and I. Kawachi. 2003. Caregiving and Risk of Coronary Heart Disease in U.S. Women: A Prospective Study. American Journal of Preventive Medicine 24: 113-119.
70 Schulz, R. and S. R. Beach, Caregiving as a Risk Factor for Mortality: The Caregiver Health Effects Study, JAMA 282 (1999): 2215-2219.
71 See note 3 above.
72 Navaie-Waliser, M., P.H. Feldman, D.A. Gould, C.L. Levine, A.N. Kuerbis, and K. Donelan. 2002. When the Caregiver Needs Care: The Plight of Vulnerable Caregivers. American Journal of Public Health 92:409-413.
73 Schulz, R., A.T. O-Brien, J. Bookwals and K. Fleissner. 1995. Psychiatric and Physical Morbidity Effects of Dementia Caregiving: Prevalance, Correlates, and Causes. The Gerontologist 35:771-791.
74 Ibid
75 Cohen, D., D. Luchins, C. Eisdorfer, G. Paveza, J. Ashford, P. Gorelick, R. Hirschman, S. Freels, P. Levy, T. Semia and H. Shaw. 1990. Caring for Relatives with Alzheimer’s Disease: The Mental Health Risks to Spouses, Adult Children, and other Family Caregivers, Behavior, Health and Aging 1:171-182.
76 Covinsky, K.E., et.al. 2003. Patient and Caregiver Characteristics Associated with Depression in Caregivers of Patients with Dementia. Journal of General Internal Medicine 18:1006-14.
77 See note 6 above.
78 See note 3 above.
79 AARP. In the Middle: A Report on Multicultural Boomers Coping with Family and Aging Issues. Washington, DC: AARP, 2001.
80 Beach, S.R., R. Schulz, G.M. Williamson, L.S. Miller, M.F. Weiner and C.E. Lance. 2005. Risk Factors for Potentially Harmful Informal Caregiver Behavior. Journal of the American Geriatric Society 53:255-61.
81 Beach, S.R., R. Schulz, J.L Yee and S. Jackson. 2000. Negative and Positive Health Effects of Caring for a Disabled Spouse: Longitudinal Findings from the Caregiver Health Effects Study. Psychology and Aging 15:259-271.
82 See note 13 above.
83 See note 13 above.
84 See note 4 above.
85 Ibid.
86 Metlife Mature Market Group. The Metlife Study of Employer Costs for Working Caregivers. Westport: Metlife Mature Market Group, 1997.
87 Langa K.M., M. Chernew, M. Kabeto, A.R. Herzog, M.B. Ofstedal, R. Willis, R. Wallace, L. Mucha, W. Straus, AM. Fendrick. 2001. National Estimates of the Quantity and Cost of Informal Caregiving for the Elderly with Dementia. Journal of General Internal Medicine 16: 770-778.
88 Harrow, B.S., D.F. Mahoney, A.B. Mendelsohn, M.G. Ory, D.W. Coon, S.H. Belle and L.O. Nichols. 2004. Variation in Cost of Informal Caregiving and Formal-Service Use for People with Alzheimer’s Disease. American Journal of Alzheimer’s Disease and Other Dementias 19:299-308.
89 Metlife Mature Market Institute. The Metlife Juggling Act Study: Balancing Caregiving with Work and the Costs Involved. New York: Metropolitan Life Insurance Company, 1999.
90 Wage wealth is defined as the current value of life-time wages calculated as of the date of retirement.
91 See note 5 above.
92 Thompson, L. Long-Term Care: Support for Family Caregivers. Long-Term Financing Project. Washington DC: Georgetown University Press, 2004.
93 See note 5 above.
94 See note 6 above.
95 Scharlach, A., B. Sirotnik, S. Bockman, M. Neiman, C. Ruiz, and T. Dal Santo. A Profile of Family Caregivers: Results of the California Statewide Survey of Caregivers. Berkeley: Center for the Advanced Study of Aging Services, U.C. Berkeley Press, 2003.
96 Schulz, R., O’Brien, A., Czaja, S., Ory, M., Norris, R., Martire, L.M., Belle, S.H., Burgio, L., Gitlin, L., Coon, D., Burns, R., Gallagher-Thompson, D., and Stevens, A. 2002. Dementia Caregiver Intervention Research: In Search of Clinical Significance. The Gerontologist 42:589-602.
97 Bookwala, J., Zdaniuk, B., Burton, L., Lind, B., Jackson, S., Schulz, R. 2004. Concurrent and Long-Term Predictors of Older Adults’ Use of Community-Based Long-Term Care Services: The Caregiver Health Effects Study. Journal of Aging and Health 16: 88-115.
98 Zarit, S.H., Stephens, M.A.P., Townsend, A. and Greene, R. 1998. Stress Reduction for Family Caregivers: Effects of Adult Day Care Use. Journal of Gerontology: Social Sciences 53B:S267-S277.
99 Schulz, R. 2004. The Past and Future of Family Caregiving Research. Contemporary Gerontology 10:139-144.
100 Brodaty, H., Green, A. and Koschera, A. 2003. Meta-Analysis of Psychosocial Interventions for Caregivers of People with Dementia. Journal of the American Geriatric Society 51:657-664.
101 Gitlin, L.N., Belle, S.H., Burgio, L., Czaja, S., Mahoney, D., Gallagher-Thompson, D., Burns, R., Hauck, W.W., and Schulz, R. 2003. Effect of Multicomponent Interventions on Caregiver Burden and Depression: The REACH Multisite Initiative at 6-Month Follow-Up. Psychology and Aging 18:361-374.
102 Mittelman, M. S., Ferris, S. H., Shulman, E., Steinberg, G., Ambinder, A., Mackell, J. A., et al. 1995. A Comprehensive Support Program: Effect on Depression in Spouse-Caregiver of Alzheimer’s Disease Patients. The Gerontologist 35:792–802.

Resources

Family Caregiver Alliance
180 Montgomery Street, Suite 1100
San Francisco, CA 94104
(415) 434-3388
(800) 445-8106
Web Site: www.caregiver.org
E-mail: info@caregiver.org

Family Caregiver Alliance (FCA) seeks to improve the quality of life for caregivers through education, services, research and advocacy.

FCA’s National Center on Caregiving offers information on current social, public policy and caregiving issues and provides assistance in the development of public and private programs for caregivers.

For residents of the greater San Francisco Bay Area, FCA provides direct family support services for caregivers of those with Alzheimer’s disease, stroke, ALS, traumatic brain injury, Parkinson’s and other debilitating disorders that strike adults.

This fact sheet was prepared by Family Caregiver Alliance in cooperation with California’s Caregiver Resource Centers and funded by the California Department of Mental Health. © 2001 Family Caregiver Alliance. Revised 2005. All rights reserved. FS-SCS200506.

  E-mail to a Friend

  Printable Version