What are patients and their families told about the diagnosis of dementia? Results of a family survey

BACKGROUND: Controversy exists as to whether dementia patients should be told their diagnosis and prognosis. OBJECTIVE: This study examined the experience of patients and families when a diagnosis of dementia is given. METHOD: Fifty-seven family members from community dementia support groups answered a questionnaire regarding the diagnosis of dementia in a family member. RESULTS: Family members were significantly more likely to have been told the diagnosis and symptoms to expect in dementia than patients themselves. Half of the families felt they were not given enough information regarding dementia. Interestingly, the majority of family members believed patients should be told their diagnosis and prognosis yet about half had reported that informed patients had reacted poorly to being told their diagnosis and only about a third felt it was helpful to the patient. CONCLUSION: The results suggest physicians should better involve patients and their families in disclosing diagnoses and information regarding dementia. The results also suggest the current AMA guidelines to inform patients their diagnosis of dementia are inadequate to address the clinical complexities of this issue.