Preferences of older people for early diagnosis and disclosure of Alzheimer's disease (AD) before and after considering potential risks and benefits

• Studies suggest that most people are in favor of screening for and early diagnosis of dementia.
• Respondents in studies to date may not have reflected on the benefits and risks of diagnosis.
• In this study, most older people wanted to ‘know’ if they had AD.
• There was a diminishing support from disclosure to diagnostic assessment to screening for AD.
• Preferences for diagnosis and screening declined after consideration of the consequences.

Studies suggest that most people support screening for and disclosure of dementia, but it is not clear whether respondents have reflected on the benefits and risks of diagnosis. In this study, preferences, rated on a 7-point Likert scale, for diagnosis, disclosure and screening for AD were measured before and after discussion of the potential benefits and hazards of diagnosis in 132 hospital and community subjects in Galway, Ireland. At baseline the percentages with a positive attitude (Likert rating of 5–7) were 79.6% for diagnosis, 85.7% for disclosure and 59.3% for screening. On follow-up, there was no significant change in disclosure responses (12 more positive, 18 more negative, 102 unchanged (p = 0.2), 78.1% positive attitude) while there were significant declines in ratings for diagnosis (11 more positive, 27 more negative, 94 unchanged (p = 0.03), 69.1% with positive attitude) and screening (10 more positive, 35 more negative, 87 unchanged (p < 0.0001), 42.1% positive attitude). In conclusion, although most people want to ‘know’ if they have AD, there is a diminishing degree of support from disclosure to diagnostic assessment to screening. Preferences for diagnosis and screening decline when respondents have the opportunity to consider the consequences of their decision.