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Measurement of informal care time in a study of patients with dementia

Published online by Cambridge University Press:  08 July 2008

Simone Neubauer ,
Rolf Holle ,
Petra Menn ,
Maria Grossfeld-Schmitz  and
Elmar Graesel
Simone Neubauer*
Affiliation:
Helmholtz Zentrum München, Institute of Health Economics and Health Care Management, Neuherberg, Germany
Rolf Holle
Affiliation:
Helmholtz Zentrum München, Institute of Health Economics and Health Care Management, Neuherberg, Germany
Petra Menn
Affiliation:
Helmholtz Zentrum München, Institute of Health Economics and Health Care Management, Neuherberg, Germany
Maria Grossfeld-Schmitz
Affiliation:
University Hospital Erlangen, Department of Psychiatry and Psychotherapy, Medical Psychology and Medical Sociology, Erlangen, Germany
Elmar Graesel
Affiliation:
University Hospital Erlangen, Department of Psychiatry and Psychotherapy, Medical Psychology and Medical Sociology, Erlangen, Germany
*
Correspondence should be addressed to: Simone Neubauer, Helmholtz Zentrum München, Institute of Health Economics and Health Care Management, Ingolstaedter Landstr. 1, 85764 Neuherberg, Germany. Phone: +49 (0) 89 3187 1240; Fax: +49 (0) 89 3187 3375. Email: [email protected].
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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.

Method: 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.

Conclusion: 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.

Keywords

dementiainformal careRUDmeasurementeconomic evaluation
Type
Research Article
Information
International Psychogeriatrics , Volume 20 , Issue 6 , December 2008 , pp. 1160 - 1176
Copyright
Copyright © International Psychogeriatric Association 2008

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