Information for dementia patients and their caregivers: What information does a memory clinic pass on, and to whom?

Abstract

This study assessed the information provided in a memory clinic and the patient and caregiver factors that influenced the provision of information. The study was part of a larger cross-sectional study of the diagnosis of dementia and satisfaction with information given. The participants were 51 elderly patients suspected of having dementia and living at home together with their caregivers. The main outcome measures were the checklist of information communicated to the patients and caregivers, patients' behavioural problems, patients' instrumental activities of daily living (IADL) problems, and caregivers' sense of competence. The results indicate that basic information about the diagnosis was given to 86% of patients and 88% of caregivers. Specific information about patients' behaviour and professional care was more often given when patients had more cognitive, behavioural, or IADL problems and caregivers had a lower sense of competence. Providing the majority of patients with information is feasible. These results contribute to an explanation of previous findings indicating that caregivers of patients with cognitive problems not related to dementia were less satisfied with the information they received. Adequate information should not only include issues considered relevant by clinicians but should also be tailored to the information needs of patients and caregivers.