Diagnostic disclosure in dementia: an opportunity for intervention?

OBJECTIVE: To find out from people with dementia what they were worried about in relation to their diagnosis, and how they changed their behaviour in relation to these worries.Design. Consecutive case series of people with early dementia presenting for neuropsychological assessment. METHODS: People's ability to engage in talking about dementia was assessed by asking three standardised questions. Two measures of cognitive function, the MMSE and MEAMS were given to all. Those who could engage were asked two open-ended questions in relation to what they worried about and how learning they had dementia had affected them. RESULTS: The commonest worries related to fear of others finding out, fears of social embarrassment, long term dependency needs and not being listened to. Commonest effects were social withdrawal and hypervigilance for evidence of cognitive failures. CONCLUSIONS: People with dementia who know their diagnosis have worries which effect their behaviour in a way likely to result in low self-esteem, self-stigmatisation and impaired quality of life.