title: Informal care for stroke survivors: results from the North East Melbourne Stroke Incidence Study (NEMESIS).
abstract: OBJECTIVE
  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.
authors.affiliation: National Stroke Research Institute, Austin and Repatriation Medical Centre, West Heidelberg, Victoria 3081, Australia. helend@austin.unimelb.edu.au
authors.forename: H M
authors.initials: HM
authors.lastname: Dewey
authors.forename: A G
authors.initials: AG
authors.lastname: Thrift
authors.forename: C
authors.initials: C
authors.lastname: Mihalopoulos
authors.forename: R
authors.initials: R
authors.lastname: Carter
authors.forename: R A L
authors.initials: RA
authors.lastname: Macdonell
authors.forename: J J
authors.initials: JJ
authors.lastname: McNeil
authors.forename: G A
authors.initials: GA
authors.lastname: Donnan
mesh_terms: D000203:Activities of Daily Living; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001315:Australia / Q000453:epidemiology; D017028:Caregivers / Q000191:economics* / Q000706:statistics & numerical data; D017281:Cost of Illness; D003365:Costs and Cost Analysis; D005260:Female; D006701:Home Nursing / Q000191:economics* / Q000706:statistics & numerical data; D006801:Humans; D015994:Incidence; D008297:Male; D008875:Middle Aged; D020521:Stroke / Q000191:economics* / Q000453:epidemiology; D000071939:Stroke Rehabilitation; D017741:Survivors / Q000706:statistics & numerical data*