A national profile of family and unpaid caregivers who assist older adults with health care activities

JAMA Internal Medicine

Volumn 176, Issue 3, 2016, Pages 372-379

  Wolff, Jennifer L ^a   Spillman, Brenda C ^b   Freedman, Vicki A ^c   Kasper, Judith D ^a  

^a JOHNS HOPKINS BLOOMBERG SCHOOL OF PUBLIC HEALTH   (United States)

^b URBAN INSTITUTE   (United States)

^c UNIVERSITY OF MICHIGAN   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

ADULT; AGED; ARTICLE; CAREGIVER; CAREGIVER BURDEN; CAREGIVER SUPPORT; DEMENTIA; DISABILITY; EMOTIONAL STRESS; FAMILY; FEMALE; FINANCIAL DEFICIT; HEALTH CARE; HUMAN; MALE; MIDDLE AGED; PRIORITY JOURNAL; PRODUCTIVITY; RESPONSIBILITY; HEALTH CARE DELIVERY; NURSING CARE; ODDS RATIO; PSYCHOLOGY; STATISTICS AND NUMERICAL DATA; UNITED STATES; VERY ELDERLY;

ADULT; AGED; AGED, 80 AND OVER; CAREGIVERS; DELIVERY OF HEALTH CARE; FEMALE; HUMANS; MALE; MIDDLE AGED; NURSING CARE; ODDS RATIO; UNITED STATES;

EID: 84962156860     PISSN: 21686106     EISSN: None     Source Type: Journal    
DOI: 10.1001/jamainternmed.2015.7664     Document Type: Article

References (57)

1. Institute of Medicine. Crossing the Quality Chasm: A New Health System for the 21st Century. Washington, DC: National Academies Press; 2001.
2. Institute of Medicine. Retooling for an Aging America: Building the Health Care Workforce. Washington, DC: National Academies Press; 2008.
3. Freedman VA, Spillman BC Disability and care needs among older Americans. Milbank Q. 2014; 92 (3):509-541.
4. Spillman BC, Wolff JL, Freedman V.A., Kasper JD. Informal Caregiving for Older Americans: An Analysis of the 2011 National Survey of Caregiving. Washington, DC: Assistant Secretary for Planning and Evaluation; 2014.
5. Congressional Budget Office. Rising Demand for Long-term Services and Supports for Elderly People. Washington, DC: Congressional Budget Office; June 2013.
6. Wolff JL, Roter DL Hidden in plain sight: medical visit companions as a resource for vulnerable older adults. Arch Intern Med. 2008; 168(13):1409-1415.
7. Wolff JL, Roter DL Family presence in routine medical visits: a meta-analytical review. Soc Sci Med. 2011; 72(6):823-831.
8. Levine C, Halper D, Peist A., Gould DA. Bridging troubled waters: family caregivers, transitions, and long-term care. Health Aff (Millwood). 2010; 29(1): 116-124.
9. Almborg AH, Ulander K, Thulin A., Berg S. Discharge planning of stroke patients: the relatives' perceptions of participation. J Clin Nurs. 2009; 18 (6):857-865.
10. Torke AM, Sachs GA, Helft P.R., et al. Scope and outcomes of surrogate decision making among hospitalized older adults. JAMA Intern Med. 2014; 174(3):370-377.
11. Price EL, Bereknyei S, Kuby A., Levinson W, Braddock CH III. New elements for informed decision making: a qualitative study of older adults' views. Patient Educ Couns. 2012; 86(3):335-341.
12. Reinhard SC, Levine C, Samis S. Home Alone: Family Caregivers Providing Complex Chronic Care. Washington, DC: AARP and United Hospital Fund; 2012.
13. Wolff JL. Family matters in health care delivery. JAMA. 2012; 308(15):1529-1530.
14. Kelly K, Wolfe N, Gibson M., Feinberg L. Listening to Family Caregivers: The Need to Include Caregiver Assessment in Medicaid Home and Community-Based Service Waiver Programs. Washington, DC: AARP; December 2013.
15. Jennings LA, Reuben DB, Evertson L.C., et al. Unmet needs of caregivers of individuals referred to a dementia care program. J Am Geriatr Soc. 2015; 63(2):282-289.
16. Braveman P, Gottlieb L. The social determinants of health: it's time to consider the causes of the causes. Public Health Rep. 2014; 129(suppl 2):19-31.
17. Shortell SM. Bridging the divide between health and health care. JAMA. 2013; 309(11):1121-1122.
18. Halfon N, Conway PH The opportunities and challenges of a lifelong health system. N Engl J Med. 2013; 368(17):1569-1571.
19. Wolff JL, Spillman B. Older adults receiving assistance with physician visits and prescribed medications and their family caregivers: prevalence, characteristics, and hours of care. J Gerontol B Psychol Sci Soc Sci. 2014; 69(Suppl 1): S65-S72.
20. Kasper JD, Freedman VA, Spillman BC National Study of Caregiving (NSOC) User Guide. Baltimore, MD: Johns Hopkins University School of Public Health; February 13, 2013.
21. Galvin JE, Roe CM, Xiong C, Morris JC Validity and reliability of the AD8 informant interview in dementia. Neurology. 2006; 67(11):1942-1948.
22. Kasper JD, Freedman VA, Spillman BC Classification of Persons by Dementia Status in the National Health and Aging Trends Study. Baltimore, MD: Johns Hopkins University School of Public Health; June 5, 2013. Technical Paper 5.
23. Giovannetti ER, Wolff JL, Frick K.D., Boult C. Construct validity of the Work Productivity and Activity Impairment questionnaire across informal caregivers of chronically ill older patients. Value Health. 2009; 12(6):1011-1017.
24. Yarnall KS, Pollak KI, Østbye T, Krause KM, Michener JL. Primary care: is there enough time for prevention? Am J Public Health. 2003; 93(4):635-641.
25. Østbye T, Yarnall KS, Krause KM, Pollak KI, Gradison M, Michener JL. Is there time for management of patients with chronic diseases in primary care? Ann Fam Med. 2005; 3(3):209-214.
26. Gallacher K, Morrison D, Jani B., et al. Uncovering treatment burden as a key concept for stroke care: a systematic review of qualitative research. PLoS Med. 2013; 10(6):e1001473. doi:10.1371/journal.pmed.1001473.
27. Boyd CM, Wolff JL, Giovannetti E, et al Healthcare task difficulty among older adults with multimorbidity. Med Care. 2014; 52(suppl 3):S118-S125.
28. Pinquart M, Sörensen S. Correlates of physical health of informal caregivers: a meta-analysis. J Gerontol B Psychol Sci Soc Sci. 2007; 62(2):126-137.
29. Kasper JD, Freedman VA, Spillman B.C., Wolff JL. The disproportionate impact of dementia on family and unpaid caregiving to older adults. Health Aff (Millwood). 2015; 34(10):1642-1649.
30. Adelman RD, Tmanova LL, Delgado D, Dion S., Lachs MS. Caregiver burden: a clinical review. JAMA. 2014; 311(10):1052-1060.
31. Pinquart M, Sörensen S. Associations of stressors and uplifts of caregiving with caregiver burden and depressive mood: a meta-analysis. J Gerontol B Psychol Sci Soc Sci. 2003; 58(2):112-128.
32. Brodaty H, Arasaratnam C. Meta-analysis of nonpharmacological interventions for neuropsychiatric symptoms of dementia. Am J Psychiatry. 2012; 169(9):946-953.
33. Northouse LL, Katapodi MC, Song L, Zhang L., Mood DW. Interventions with family caregivers of cancer patients: meta-analysis of randomized trials. CA Cancer J Clin. 2010; 60(5):317-339.
34. Pinquart M, Sörensen S. Helping caregivers of persons with dementia: which interventions work and how large are their effects? Int Psychogeriatr. 2006; 18(4):577-595.
35. Levine C, Albert SM, Hokenstad A, Halper D.E., Hart AY, Gould DA. "This case is closed": family caregivers and the termination of home health care services for stroke patients. Milbank Q. 2006; 84 (2):305-331.
36. Swan BA. A nurse learns firsthand that you may fend for yourself after a hospital stay. Health Aff (Millwood). 2012; 31(11):2579-2582.
37. Zulman DM, Piette JD, Jenchura E.C., Asch SM, Rosland AM. Facilitating out-of-home caregiving through health information technology: survey of informal caregivers' current practices, interests, and perceived barriers. J Med Internet Res. 2013; 15(7): e123. doi:10.2196/jmir.2472.
38. Sarkar U, Bates DW Care partners and online patient portals. JAMA. 2014; 311(4):357-358.
39. Levine C. HIPAA and talking with family caregivers: what does the law really say? Am J Nurs. 2006; 106(8):51-53.
40. Mazanec SR, Daly BJ, Douglas S.L., Lipson AR. Work productivity and health of informal caregivers of persons with advanced cancer. Res Nurs Health. 2011; 34(6):483-495.
41. Burton WN, Chen CY, Conti D.J., Pransky G., Edington DW. Caregiving for ill dependents and its association with employee health risks and productivity. J Occup Environ Med. 2004; 46(10): 1048-1056.
42. The future of paid family leave in the USA. Lancet. 2014; 384(9937):2.
43. Feinberg L. Keeping up with the times: supporting family caregivers with workplace leave policies. http://www.aarp.org/content/dam/aarp/research/public-policy-institute/ltc/2013/fmla-insight-keeping-up-with-time-AARP-ppi-ltc.pdf. Published 2013. Accessed December 7, 2015.
44. Giovannetti ER, Wolff JL Cross-survey differences in national estimates of numbers of caregivers of disabled older adults. Milbank Q. 2010; 88(3):310-349.
45. Kasper JD, Freedman VA Findings from the 1st round of the National Health and Aging Trends Study (NHATS): introduction to a special issue. J Gerontol B Psychol Sci Soc Sci. 2014; 69(suppl 1):S1-S7.
46. Wolff JL, Kasper JD Caregivers of frail elders: updating a national profile. Gerontologist. 2006; 46 (3):344-356.
47. National Quality Forum. Priority Setting for Healthcare Performance Measurement: Addressing Performance Measure Gaps in Person-Centered Care and Outcomes. Washington, DC: National Quality Forum; final report August 15, 2014.
48. Interprofessional Education Collaborative. Core Competencies for Interprofessional Collaborative Practice. Washington, DC: Interprofessional Education Collaborative; 2011.
49. Council on Scientific Affairs, American Medical Association. Physicians and family caregivers: a model for partnership. JAMA. 1993; 269(10):1282-1284.
50. Mitnick S, Leffler C, Hood VL; American College of Physicians Ethics, Professionalism and Human Rights Committee. Family caregivers, patients and physicians: ethical guidance to optimize relationships. J Gen Intern Med. 2010; 25(3):255-260.
51. Kelly K, Reinhard SC, Brooks-Danso A. Professional partners supporting family caregivers. Am J Nurs. 2008; 108(9)(suppl):6-12.
52. McDaniel S, Campell T, Hepworth J., Lorenz A. Family-Oriented Primary Care. 2nd ed. New York, NY: Springer; 2005.
53. Hussey PS, Schneider EC, Rudin R.S., Fox DS, Lai J, Pollack CE. Continuity and the costs of care for chronic disease. JAMA Intern Med. 2014; 174(5):742-748.
54. Shekelle PG, Pronovost PJ, Wachter R.M., et al. Advancing the science of patient safety. Ann Intern Med. 2011; 154(10):693-696.
55. Newcomer RJ, Kang T, Doty P. Allowing spouses to be paid personal care providers: spouse availability and effects on Medicaid-funded service use and expenditures. Gerontologist. 2012; 52(4): 517-530.
56. Wolff JL, Boyd CM, Gitlin L.N., Bruce ML, Roter DL. Going it together: persistence of older adults' accompaniment to physician visits by a family companion. J Am Geriatr Soc. 2012; 60(1):106-112.
57. Vickrey BG, Mittman BS, Connor K.I., et al. The effect of a disease management intervention on quality and outcomes of dementia care: a randomized, controlled trial. Ann Intern Med. 2006; 145(10):713-726.