A national study of the quantity and cost of informal caregiving for the elderly with stroke
Abstract
Background: As the US population ages, increased stroke incidence will result in higher stroke-associated costs. Although estimates of direct costs exist, little information is available regarding informal caregiving costs for stroke patients.
Objective: To determine a nationally representative estimate of the quantity and cost of informal caregiving for stroke.
Methods: The authors used data from the first wave of the Asset and Health Dynamics (AHEAD) Study, a longitudinal study of people over 70, to determine average weekly hours of informal caregiving. Two-part multivariable regression analyses were used to determine the likelihood of receiving informal care and the quantity of caregiving hours for those with stroke, after adjusting for important covariates. Average annual cost for informal caregiving was calculated.
Results: Of 7,443 respondents, 656 (8.8%) reported a history of stroke. Of those, 375 (57%) reported stroke-related health problems (SRHP). After adjusting for cormorbid conditions, potential caregiver networks, and sociodemographics, the proportion of persons receiving informal care increased with stroke severity, and there was an association of weekly caregiving hours with stroke ± SRHP (p < 0.01). Using the median 1999 home health aide wage ($8.20/hour) as the value for family caregiver time, the expected yearly caregiving cost per stroke ranged from $3,500 to $8,200. Using conservative prevalence estimates from the AHEAD sample (750,000 US elderly patients with stroke but no SRHP and 1 million with stroke and SRHP), this would result in an annual cost of up to $6.1 billion for stroke-related informal caregiving in the United States.
Conclusions: Informal caregiving-associated costs are substantial and should be considered when estimating the cost of stroke treatment.
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References
1.
American Heart Association (AHA). 1998 and stroke statistical update. Dallas, TX: AHA, 1998.
2.
Murray CJL, Lopez AD. Global mortality, disability and the contribution of risk factors: Global Burden of Disease Study. Lancet . 1997; 349: 1436–1442.
3.
Scholte op Reimer WJ, de Haan RJ, Rijnders PT, Linburg M, van den Bos GA. The burden of caregiving in partners of long-term stroke survivors. Stroke . 1998; 29: 1605–1611.
4.
Low JTS, Payne S, Roderick P. The impact of stroke on informal carers: a literature review. Soc Sci Med . 1999; 49: 711–725.
5.
Grant JS. Social problem solving partnerships with family caregivers. Rehab Nursing . 1999; 24: 254–260.
6.
Soldo BJ, Hurd MD, Rodgers WL, Wallace RB. Asset and health dynamics among the oldest old: an overview of the AHEAD study. J Gerontology . 1997; 52B: 1–20.
7.
Norgard TM, Rodgers WL. Patterns of in-home care among elderly black and white Americans. J Gerontol B, Psychol Sci Soc Sci . 1997; 52B: 93–101.
8.
Wolf DA, Freedman V, Soldo BJ. The division of family labor: care for elderly parents. J Gerontol . 1997; 52B: 102–109.
9.
Ernst RL, Hay JW. The US economic and social costs of Alzheimer’s disease revisited. Am J Public Health . 1994; 84: 1261–1264.
10.
Penrod JD, Kane RL, Finch MD, Kane RA. Effects of post-hospital Medicare home health and informal care on patient functional status. Health Serv Res . 1998; 33: 513–529.
11.
Stone R, Cafferata GL, Sangl J. Caregivers of the frail elderly: a national profile. Gerontologist . 1987; 27: 616–626.
12.
Kemper P. The use of formal and informal home care by the disabled elderly. Health Serv Res . 1992; 27: 421–451.
13.
Brandt J, Spencer M, Folstein M. The telephone interview for cognitive status. Neuropsychiatry Neuropsychol Behav Neurol . 1998; 1: 111–117.
14.
Duan N, Manning WG, Morris CN, Newhouse JP. A comparison of alternative models for the demand for medical care. Journal of Business and Economic Statistics . 1983; 1: 115–126.
15.
Manning WG. The logged dependent variable, heteroscedasticity, and the retransformation problem. J Health Econ . 1998; 17: 283–295.
16.
Gold MR, Siegel JE, Russell LB, Weinstein MC. Cost Effectiveness in Health and Medicine. New York: Oxford University Press, 1996.
17.
Bureau of Labor Statistics. National Occupational Employment and Wage Estimates. July 2001. Available at: http://www.bls.gov/oesnl/oes66011.htm.
18.
Anderson C, Linto J, Stewart-Wynne EG. A population-based assessment of the impact and burden of caregiving for long-term stroke survivors. Stroke . 1995; 26: 843–849.
19.
de Haan R, Limburg M, van der Meulen J, et al. Use of health care services after stroke. Qual Health Care . 1993; 2: 222–227.
20.
Greveson GC, Gray CS, French JM, et al. Long-term outcome for patients and carers following hospital admission for stroke. Age Ageing . 1991; 29: 337–344.
21.
Wade DT, Legh-Smith J, Langton-Hewer R. Effects of living with and looking after survivors of a stroke. BMJ . 1986; 293: 418–420.
22.
Bamford J, Sandercock P, Warlow C, et al. Why are patients with acute stroke admitted to hospital? BMJ . 1986; 292: 1369–1372.
23.
Draper BM, Poulos CJ, Cole A, et al. A comparison of care-givers for elderly stroke and dementia victims. J Am Geriatr Soc . 1992; 40: 896–901.
24.
Glass TA, Matchar DB, Belyear M, et al. Impact of social support on outcome in first stroke. Stroke . 1993; 24: 64–70.
25.
Evans RL, Matlock A, Bishop DS, et al. Stroke: a family dilemma. Disabil Rehabil . 1994; 16: 110–118.
26.
Han B, Haley WE. Family caregiving for patients with stroke: review and analysis. Stroke . 1999; 30: 1478–1485.
27.
Bugge C, Alexander H, Hagen S. Stroke patients’ informal caregivers: patient, caregiver and service factors that affect caregiver strain. Stroke . 1999; 30: 1517–1523.
28.
Silliman RA, Fletcher RH, Earp JL, et al. Families of elderly stroke patients: effects of home care. J Am Geriatr Soc . 1986; 34: 643–648.
29.
Carnwath CM, Johnson DAW. Psychiatric morbidity among spouses of patients with stroke. BMJ . 1987; 294: 409–411.
30.
Schulz R, Tompkins CA, Rau MT. A longitudinal study of psychosocial impact of stroke on primary support persons. Psychol Aging . 1987; 3: 131–141.
31.
Kotila M, Numminen H, Waltimo O, Kaste M. Depression after stroke: results of the FINNSTROKE Study. Stroke . 1998; 29: 268–372.
32.
Schulz R, O’Brien AT, Bookwala J, et al. Psychiatric and physical morbidity effects of dementia caregiving: prevalence, correlates, and causes. Gerontologist . 1995; 35: 771–791.
33.
Ross S, Morris RG. Psychological adjustment of the spouses of aphasic stroke patients. Int J Rehabil Res . 1988; 11: 383–386.
34.
Macnamara SE, Gummow LJ, Goka R, et al. Caregiver strain: need for late poststroke intervention. Rehabil Psychol . 1990; 35: 71–78.
35.
Hankey GJ. Stroke: how large a public health problem, and how can the neurologist help? Arch Neurol . 1999; 56: 748–754.
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Publication History
Received: November 29, 2001
Accepted: March 22, 2002
Published online: June 25, 2002
Published in print: June 25, 2002
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