Disclosing a diagnosis of Alzheimer's disease: patient and family experiences

Background: Informing patients and families about the diagnosis of Alzheime r's disease (AD) is a complex ethical and practical issue. This qualitative study explores the psychosocial impact of disclosing a diagnosis of AD on patients and family members. Methods: This study identified 14 patients and their accompanying family members undergoing a multidisciplinary assessmen t for dementia at an outpatient clinic for AD and related disorders. Of the group, three patients had probable AD and five had possible AD as per NINC DS-ADRDA criteria. Six patients were not demented as per DSM IIIR criteria. Disclosure of diagnosis occurred, in a family conference, within six to ei ght weeks of the assessment. Data collection methods included observation o f the assessment and the family conference as well as in-depth home intervi ews with family members and with each patient whenever feasible. The interv iews were transcribed verbatim and coded for recurrent themes. Results: A t otal of 40 individuals across 14 families participated in this study. Only two families chose not to have the patient attend the family conference. Th e disclosure of a diagnosis of probable AD brought on an experience of reli ef in three families, marking the end of a lengthy period of confusion abou t the nature of memory problems. Patients diagnosed with possible AD and th eir families interpreted how indicative the diagnosis was of the presence o f the disease with varying degrees of certainty depending on pre-assessment beliefs about the cause of memory problems. In the group diagnosed as not demented, four patients had complaints of forgetfulness likely related to m inor depression. The disclosure of a diagnosis of no dementia did not produ ce the anticipated relief. Two patients continued to believe their memory p roblems were caused by the early onset of AD or some other "organic' proble m. Interpretation: This study reveals that disclosure of the diagnosis of A D to patients and family members is generally beneficial but that there are variations in the understanding of the diagnostic information, particularl y in instances where the assessment results are ambiguous.