Review www.brainaging.org 3-12 Towards Harmonisation of Caregiver Outcome Measures Henry Brodaty 1# , Alisa Green 1 , Sube Banerjee 2 , Mary Mittelman 3 , Richard Schulz 4 , Peter Whitehouse 5 , Richard Harvey 6 , Mervyn Powell 2 , Martin Prince 2 , Della Rios 7 , Steve Zarit 7 On behalf of the Medical and Scientific Panel of Alzheimer’s Disease International Working Group on Consensus Guidelines for Caregiver Research 1 Academic Dept for Old Age Psychiatry, Prince of Wales Hospital, Sydney, Australia 2 Institute of Psychiatry, London, UK 3 Silberstein Ageing and Dementia Research Centre, New York University, NY, USA 4 University Centre for Social and Urban Research, University of Pittsburgh, PA, USA 5 Case Western Reserve University, Cleveland, Ohio, USA 6 Alzheimer’s Society, London, UK 7 Pennsylvania State University, PA, USA Correspondence: Professor Henry Brodaty; Academic Department for Old Age Psychiatry; Euroa Centre, Prince of Wales Hospital; Avoca St, Randwick, Sydney; NSW 2031, AUSTRALIA; Telephone: 61 2 9382 3759; Facsimile: 61 2 9382 3762; Email: h.brodaty@unsw .edu.au Abstract Unlike standard measures of cognition or activities of daily living employed in dementia research, outcome measures used in caregiver intervention studies are far from uniform. Because of the variety in the measurement of intervention effectiveness, comparison between studies is difficult except by statistical manipulation. An international group of caregivers and experts in the field of caregiver research met at the World Alzheimer Congress in Washington D.C. in July 2000. Their aim was to seek agreement on issues of importance in caregiver research, and to achieve harmonisation with regard to which caregiver outcomes should be assessed and how these should be measured. Subsequent to the symposium, a questionnaire was sent to the participants to finalise the minimum data set of recommended caregiver outcome measures. The task, far more complex than initially realised, will require further discussions with caregivers and researchers separately and together. This paper presents the basis of a minimum data set for further refinement and discussion. Keywords: caregiver, carer, harmonisation, outcome, assessment, measure, dementia. Why do we need harmonisation? Unlike standard measures of cognition or activities of daily living, which are used to test the effectiveness of compounds in drug trials for people with dementia, outcome measures used in caregiver intervention studies are far from uniform. Interventions for caregivers, such as counselling, training/education programs, support groups and various combinations thereof, have attempted to effect change on a plethora of measures. These include, but are not restricted to, psychological morbidity (e.g. depression, anxiety), physical health, quality of life, social support, burden (objective and subjective), knowledge of Alzheimer’s disease (AD), health care utilisation and expenditure, coping styles, relationship strain (between caregiver and patient) and activity restriction. The effects on variables pertaining to the person with dementia,