Do general practitioners disclose correct information to their patients suspected of dementia and their caregivers? A prospective observational study

Abstract

This study describes what general practitioners (GPs) tell persons who appear to have dementia and their caregivers after assessment and to estimate the number of (in)correct disclosures and their determinants. In a prospective observational study 64 GPs were instructed to use the Dutch national dementia guideline on all consecutive elderly (55+) patients, newly suspected of dementia. Patients were referred to a multi-disciplinary memory clinic team that served as a diagnostic reference standard. Both GPs and the memory clinic team registered their findings and actions on a predefined form. A total of 107 possible cases of dementia were recorded, and 83 were accompanied by their caregiver. After assessment, dementia was considered present in 69 persons, absent in 29, and uncertain in nine. The GPs told the diagnosis to 42% of people with probable dementia and to 74% of their caregivers. The caregivers’ experiences were noted in most cases but specific advice was provided in less than half. Only increased severity of dementia was related to more disclosure to patients and caregivers. Disclosures by GPs were correct in most cases. The GPs were much more reluctant to tell the probable dementia diagnosis to patients than to (family) caregivers. The GPs disclosed incorrect diagnoses to two people without dementia, and two with dementia according to the memory clinic diagnosis.