This Article Full Text Full Text (PDF) Alert me when this article is cited Alert me if a correction is posted Citation Map Services Email this article to a friend Similar articles in this journal Similar articles in PubMed Alert me to new issues of the journal Download to citation manager Request Permissions Citing Articles Citing Articles via HighWire Citing Articles via Google Scholar Google Scholar Articles by Dewey, H.M. Articles by Donnan, G.A. Search for Related Content PubMed PubMed Citation Articles by Dewey, H.M. Articles by Donnan, G.A. Related Collections Behavioral/psychosocial - stroke Cerebrovascular disease/stroke Epidemiology

(Stroke. 2002;33:1028.)
© 2002 American Heart Association, Inc.

Original Contributions

Informal Care for Stroke Survivors

Results From the North East Melbourne Stroke Incidence Study (NEMESIS)

H.M. Dewey, PhD; A.G. Thrift, PhD; C. Mihalopoulos, BSc (Hons), PGradDHE; R. Carter, MAS; R.A.L. Macdonell, MD; J.J. McNeil, PhD G.A. Donnan, MD

From the National Stroke Research Institute, Austin and Repatriation Medical Centre, West Heidelberg (H.M.D., A.G.T., G.A.D.); Neurology Department, Austin and Repatriation Medical Centre, Heidelberg (H.M.D., R.A.L.M., G.A.D.); Department of Epidemiology and Preventive Medicine, Monash Medical School, Alfred Hospital, Prahran (A.G.T., J.J.M.); Centre for Health Program Evaluation, West Heidelberg (C.M., R.C.); and Department of Medicine, Melbourne University, Melbourne (R.A.L.M., G.A.D.), Australia.

Correspondence to Dr Helen Dewey, National Stroke Research Institute, Repatriation Campus, Austin and Repatriation Medical Centre, Banksia St, West Heidelberg, Victoria 3081, Australia. E-mail helend{at}austin.unimelb.edu.au

Background and Purpose— Informal caregivers play an important role in the lives of stroke patients, but the cost of providing this care has not been estimated. The purpose of this study was to determine the nature and amount of informal care provided to stroke patients and to estimate the economic cost of that care.

Methods— The primary caregivers of stroke patients registered in the North East Melbourne Stroke Incidence Study (NEMESIS) were interviewed at 3, 6, and 12 months after stroke, and the nature and amount of informal care provided were documented. The opportunity and replacement costs of informal care for all first-ever-in-a-lifetime strokes (excluding subarachnoid hemorrhages) that occurred in 1997 in Australia were estimated.

Results— Among 3-month stroke survivors, 74% required assistance with activities of daily living and received informal care from family or friends. Two thirds of primary caregivers were women, and most primary caregivers (>90%) provided care during family or leisure time. Total first-year caregiver time costs for all first-ever-in-a-lifetime strokes were estimated to be A$21.7 million (opportunity cost approach) or A$42.5 million (replacement cost approach), and the present values of lifetime caregiver time costs were estimated to be A$171.4 million (opportunity cost approach) or A$331.8 million (replacement cost approach).

Conclusions— Informal care for stroke survivors represents a significant hidden cost to Australian society. Because our community is rapidly aging, this informal care burden may increase significantly in the future.

Key Words: Australia • caregivers • cerebrovascular disorders • costs and cost analysis • incidence

This article has been cited by other articles:

				J. E. Keeffe, S.-L. Chou, and E. L. Lamoureux The Cost of Care for People With Impaired Vision in Australia Arch Ophthalmol, October 1, 2009; 127(10): 1377 - 1381. [Abstract] [Full Text] [PDF]

				M. Van Puymbroeck, L. L. Payne, and P.-C. Hsieh A Phase I Feasibility Study of Yoga on the Physical Health and Coping of Informal Caregivers Evid. Based Complement. Altern. Med., December 1, 2007; 4(4): 519 - 529. [Abstract] [Full Text] [PDF]

				A. Rochette, G. Bravo, J. Desrosiers, D. St-Cyr/Tribble, and A. Bourget Adaptation process, participation and depression over six months in first-stroke individuals and spouses Clinical Rehabilitation, June 1, 2007; 21(6): 554 - 562. [Abstract] [PDF]

				G. J Hankey Informal care giving for disabled stroke survivors BMJ, May 8, 2004; 328(7448): 1085 - 1086. [Full Text] [PDF]

				L. Kalra, A. Evans, I. Perez, A. Melbourn, A. Patel, M. Knapp, and N. Donaldson Training carers of stroke patients: randomised controlled trial BMJ, May 8, 2004; 328(7448): 1099. [Abstract] [Full Text] [PDF]

				A. Patel, M. Knapp, A. Evans, I. Perez, and L. Kalra Training care givers of stroke patients: economic evaluation BMJ, May 8, 2004; 328(7448): 1102. [Abstract] [Full Text] [PDF]

				M. L. Moodie, R. Carter, C. Mihalopoulos, A. G. Thrift, B. R. Chambers, G. A. Donnan, and H. M. Dewey Trial Application of a Model of Resource Utilization, Costs, and Outcomes for Stroke (MORUCOS) to Assist Priority Setting in Stroke Stroke, May 1, 2004; 35(5): 1041 - 1046. [Abstract] [Full Text] [PDF]

				N J. A van Exel, W. J. S. op Reimer, W. B. Brouwer, B. van den Berg, M. A Koopmanschap, and G. A. van den Bos Instruments for assessing the burden of informal caregiving for stroke patients in clinical practice: a comparison of CSI, CRA, SCQ and self-rated burden Clinical Rehabilitation, February 1, 2004; 18(2): 203 - 214. [Abstract] [PDF]

				H. M. Dewey, A. G. Thrift, C. Mihalopoulos, R. Carter, R. A.L. Macdonell, J. J. McNeil, and G. A. Donnan Lifetime Cost of Stroke Subtypes in Australia: Findings From the North East Melbourne Stroke Incidence Study (NEMESIS) Stroke, October 1, 2003; 34(10): 2502 - 2507. [Abstract] [Full Text] [PDF]