title: Measurement of informal care time in a study of patients with dementia.
abstract: BACKGROUND
  Previous assessments of informal care time have tended to consider only the amount of time spent with the patient by the primary informal caregiver; however, in many cases, more than one person is providing care for the patient. We assess total informal care time of people caring for patients with dementia, and estimate the bias that can arise if consideration is not made of the time spent by all participating informal caregivers.
  
  
  METHODS
  We used an extended version of the questions on informal care time from the Resource Utilization in Dementia (RUD) instrument. Caregivers were asked to state the number of days and the number of hours on a typical day they had assisted the patient in activities of daily living (ADL), instrumental ADL (IADL), and supervision during the last four weeks. Multivariate regression analyses were conducted to identify factors that could account for the amount of informal care time.
  
  
  RESULTS
  357 informal caregivers took part. Values were missing from only 4.5% of all interviews. On average, the primary informal caregiver cared for the patient 1.5, 2.1 and 1.9 hours per day in ADL, IADL and supervision respectively. Fifty-seven percent of all patients had more than one informal caregiver. Total informal care time was underestimated by about 14% if the time of caregivers other than the primary caregiver was not taken into account. The informal care time was significantly higher if the caregiver was the patient's partner and the patient's health status was lower.
  
  
  CONCLUSIONS
  Our results show that most previous studies probably underestimated costs of informal care because the time of informal caregivers other than the primary caregiver was not considered.
authors.affiliation: Helmholtz Zentrum München, Institute of Health Economics and Health Care Management, Neuherberg, Germany. simone.neubauer@helmholtz-muenchen.de
authors.forename: Simone
authors.initials: S
authors.lastname: Neubauer
authors.forename: Rolf
authors.initials: R
authors.lastname: Holle
authors.forename: Petra
authors.initials: P
authors.lastname: Menn
authors.forename: Maria
authors.initials: M
authors.lastname: Grossfeld-Schmitz
authors.forename: Elmar
authors.initials: E
authors.lastname: Graesel
mesh_terms: D000203:Activities of Daily Living / Q000523:psychology*; D000368:Aged; D000369:Aged, 80 and over; D000544:Alzheimer Disease / Q000453:epidemiology / Q000523:psychology / Q000534:rehabilitation*; D017028:Caregivers / Q000523:psychology / Q000706:statistics & numerical data*; D003072:Cognition Disorders / Q000453:epidemiology / Q000523:psychology / Q000534:rehabilitation; D003704:Dementia / Q000453:epidemiology / Q000523:psychology* / Q000534:rehabilitation*; D005240:Feasibility Studies; D015577:Geriatric Assessment; D005858:Germany / Q000453:epidemiology; D006299:Health Services for the Aged / Q000706:statistics & numerical data; D006699:Home Care Services / Q000706:statistics & numerical data; D006701:Home Nursing / Q000379:methods / Q000706:statistics & numerical data; D006801:Humans; D008875:Middle Aged; D009735:Nursing Homes / Q000191:economics; D012044:Regression Analysis; D012944:Social Support; D011795:Surveys and Questionnaires; D013647:Task Performance and Analysis; D013997:Time Factors