This study aims to: estimate the costs borne by families caring for patients with variant Creutzfeldt-Jakob disease (vCJD); to contextualise results to recent initiative; and consider the methodological problems of estimating costs of care. Semi-structured interviews and a follow-up postal questionnaire, eliciting costs to families both before and after the patient's death, were carried out participants included 19 families of patients with vCJD. Cost profiles were constructed, detailing key time and financial costs associated with their relative's illness and death accursing to families. Main outcome measures included total, median and ranges of relevant cost elements. Sensitivity analyses, comparing high and low cost estimates, were undertaken. Concludes that the National Carers Strategy does not consider fully the needs of some groups of carers or the full range or magnitude of potential costs to families associated with caring.