Informal Caregiving for Older Americans: An Analysis of the 2011 National Study of Caregiving. References


Beach S, R Schulz, J Yee, S Jackson. 2000. "Negative and positive health effects of caring for a disabled spouse: Longitudinal findings from the Caregiver Health Effects Study." Psychol Aging 15: 259-71.

Bevan JL, SK Vreeburg, S Verdugo, L Sparks. 2012. "Interpersonal conflict and health perceptions in long-distance caregiving relationships." J Health Commun 17: 747-61.

Chappell NL, RC Reid. 2002. "Burden and well-being among caregivers: examining the distinction." Gerontologist 42: 772-80.

Covinsky K, C Eng, L Lui, L Sands, A Sehgal, L Walter, D Wieland, G Eleazer, K Yaffe. 2001. "Reduced employment in caregivers of frail elders: Impact of ethnicity, patient clinical characteristics, and caregiver characteristics." J Gerontol A Biol Sci Med Sci 56: M707-13.

Covinsky K, L Goldman, E Cook, R Oye, N Desbiens, D Reding, W Fulkerson, A Connors, J Lynn, R Phillips. 1994. "The impact of serious illness on patients' families." JAMA 272: 1839-44.

Donelan K, C Hill, C Hoffman, K Scoles, P Feldman, C Levine, D Gould. 2002. "Challenged to care: Informal caregivers in a changing health system." Health Aff(Millwood) 21: 222-31.

Emanuel E, D Fairclough, J Slutsman, L Emanuel. 2000. "Understanding economic and other burdens of terminal Illness: The experience of patients and their caregivers." Ann Intern Med 132: 451-59.

Freedman VA, JC Cornman, D Carr. 2014. "Is spousal caregiving associated with enhanced well-being? New evidence from the Panel Study of Income Dynamics."Journals of Gerontology Series B: Psychological Sciences and Social Sciences doi: 10.1093/geronb/gbu004.

Freedman VA, BC Spillman. 2013. "Disability and Care Needs of Older Americans: An Analysis of the 2011 National Health and Aging Trends Study." Report to the HHS/ASPE, Office of Disability, Aging and Long-Term Care Policy. Available at

Freedman VA, BC Spillman, PM Andreski, JC Cornman, EM Crimmins, E Kramarow, J Lubitz, LG Martin, SS Merkin, RF Schoeni, TE Seeman, TA Waidmann. 2013. "Trends in late-life activity limitations in the United States: An update from five national surveys." Demography 50(2): 661-71.

Gibson MJ, A Houser. 2007. "Valuing the Invaluable: A New Look at the Economic Value of Family Caregiving." AARP Public Policy Institute Issue Brief.

Giovannetti E, J Wolff. 2010. "Cross-survey differences in national estimates of numbers of caregivers of disabled older adults." Milbank Q 88: 310-49.

HHS. 2013. "National Plan to Address Alzheimer's Disease: 2013 Update." Report from the National Alzheimer's Project Act. Available at

IOM. 2008. "Retooling for an Aging America: Building the Health Care Workforce." Washington, DC: The National Academies Press.

Johnson R, J Wiener. 2006. "A Profile of Frail Older Americans and Their Caregivers." Washington, DC: Urban Institute.

Kasper JD, VA Freedman, BC Spillman. 2013a. "National Study of Caregiving User Guide." Baltimore, MD: Johns Hopkins University School of Public Health. Available at

Kasper JD, VA Freedman, BC Spillman. 2013b. "Classification of Persons by Dementia Status in the National Health and Aging Trends Study." Report to the HHS/ASPE, Office of Disability, Aging and Long-Term Care Policy, and Technical Paper #5. Available at

Kasper JD, VA Freedman, BC Spillman. 2014. "Disability and Care Needs of Older Americans by Dementia Status: An Analysis of the 2011 National Health and Aging Trends Study." Report to the HHS/ASPE, Office of Disability, Aging and Long-Term Care Policy. Available at

Kasper JD, U Steinbach, J Andrews. 1994. "Caregiver role appraisal and caregiver tasks as factors in ending caregiving." J of Aging and Health 6(3): 397-414.

Katz S, AB Ford, AW Moskowitz, BA Jackson, MW Jaffe. 1963. "Studies of illness in the aged. The index of ADL: A standardized measure of biological and psychosocial function." JAMA 185: 914-9.

Kaye H, C Harrington, M LaPlante. 2010. "Long-term care: Who gets it, who provides it, who pays, and how much?" Health Aff (Millwood) 29: 11-21.

Kiecolt-Glaser J, K Preacher, R MacCallum, C Atkinson, W Malarkey, R Glaser. 2003. "Chronic stress and age-related increases in the proinflammatory cytokine IL-6." Proc Natl Acad Sci USA 100: 9090-5.

Kramer BJ. 1997. "Gain in the caregiving experience: Where are we? What next?" Gerontologist 37: 218-32.

Kroenke K, RL Spitzer, JBW Williams, B Lowe. 2009. "An ultra-brief screening scale for anxiety and depression: The PHQ-4." Psychosomatics 50: 613-621.

Lawton M, E Brody. 1969. "Assessment of older people: Self-maintaining and instrumental activities of daily living." Gerontologist 9: 179-86.

Lawton MP, MH Kleban, M Moss, M Rovine, A Glicksman. 1989. "Measuring caregiving appraisal." Jrnl of Gerontology 44(3): 61-71.

Levine C, D Halper, A Peist, DA Gould. 2010. "Bridging troubled waters: Family caregivers, transitions, and long-term care." Health Aff (Millwood) 29: 116-24.

Lowe B, I Wahl, M Rose et al. 2009. "A 4-item measure of depression and anxiety: Validation and standardization of the Patient Health Questionnaire-4 (PHQ-4) in the general population." Journal of Affective Disorders 122(1-2): 86-95.

Pearlin L, J Mullan, S Semple, M Skaff. 1990. "Caregiving and the stress process: An overview of concepts and their measures." Gerontologist 30: 583-94.

Pinquart M, S Sorensen. 2011. "Spouses, adult children, and children-in-law as caregivers of older adults: A meta-analytic comparison." Psychol Aging 26: 1-14.

Pinquart M, S Sorensen. 2007. "Correlates of physical health of informal caregivers: A meta-analysis." J Gerontol B Psychol Sci Soc Sci 62: P126-37.

Pinquart M, S Sorensen. 2003. "Differences between caregivers and noncaregivers in psychological health and physical health: A meta-analysis." Psychol Aging18: 250-67.

Reinhard S, C Levine, S Samis. 2012. "Home Alone: Family Caregivers Providing Complex Chronic Care." Washington, DC: AARP and United Hospital Fund.

Roth, DL, M Perkins, VG Wadley, EM Temple, WE Haley. 2009. "Family caregiving and emotional strain: Associations with quality of life in a large national sample of middle-aged and older adults." Qual Life Res 18: 679-88.

Schulz R., A Mendelsohn, W Haley, D Mahoney, R Allen, S Zhang, L Thompson, S Belle. 2003. "End-of-life care and the effects of bereavement on family caregivers of persons with dementia." N Engl J Med 349: 1936-42.

Spillman BC. 2009. "Analyses of Informal Caregiving 2004." Report to the HHS/ASPE, Office of Disability, Aging and Long-Term Care Policy.

Spillman BC. 2011. "Updated Analyses of Trends in Elderly Disability." Report to the HHS/ASPE, Office of Disability, Aging and Long-Term Care Policy.

Spillman BC, K Black. 2005. "Staying the Course: Trends in Family Caregiving." AARP Public Policy Institute Issue Paper #2005-17.

Spillman BC, SK Long. 2009. "Does high caregiver stress predict nursing home entry?" Inquiry 46(2):140-161.

Spillman B, L Pezzin. 2000. "Potential and active family caregivers: Changing networks and the 'sandwich generation'." Milbank Q 78: 347-74, table of contents.

Stone R, G Cafferata, J Sangl. 1987. "Caregivers of the frail elderly: A national profile." Gerontologist 27: 616-26.

Stone R, P Kemper. 1989. "Spouses and children of disabled elders: How large a constituency for long-term care reform?" Milbank Q 67: 485-509.

Stuckey J, M Neundorfer, K Smyth. 1996. "Burden and well-being: The same coin or related currency." Gerontologist 36: 686-93.

Vitaliano P, J Zhang, J Scanlan. 2003. "Is caregiving hazardous to one's physical health? A meta-analysis." Psychol Bull 129: 946-72.

Wolff J, J Kasper. 2006. "Caregivers of frail elders: Updating a national profile." Gerontologist 46: 344-56.

Wolff J, D Roter. 2008. "Hidden in plain sight: Medical visit companions as a quality of care resource for vulnerable older adults." Arch Intern Med 168: 1409-15.

Zarit SH, EE Femia, K Kim, CJ Whitlatch. 2010. "The structure of risk factors and outcomes for family caregivers: Implications for assessment and treatment."Aging Ment Health 14: 220-31.

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