title: Preferences of older people for early diagnosis and disclosure of Alzheimer's disease (AD) before and after considering potential risks and benefits.
abstract: 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.
authors.affiliation: Department of Geriatric Medicine, Galway University Hospital, Galway, Ireland.
authors.forename: Stephanie M
authors.initials: SM
authors.lastname: Robinson
authors.affiliation: Department of Geriatric Medicine, Galway University Hospital, Galway, Ireland.
authors.forename: Michelle
authors.initials: M
authors.lastname: Canavan
authors.affiliation: Department of Geriatric Medicine, Galway University Hospital, Galway, Ireland. Electronic address: sokanc@iolfree.ie.
authors.forename: Shaun T
authors.initials: ST
authors.lastname: O'Keeffe
mesh_terms: D000368:Aged; D000369:Aged, 80 and over; D000375:Aging; D000544:Alzheimer Disease / Q000175:diagnosis* / Q000523:psychology; D001294:Attitude to Health; D042241:Early Diagnosis; D005260:Female; D015577:Geriatric Assessment; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008403:Mass Screening / Q000379:methods; D057240:Patient Preference; D012306:Risk; D018570:Risk Assessment; D011795:Surveys and Questionnaires; D014342:Truth Disclosure
keywords: Alzheimer's disease; Disclosure of dementia; Patient preferences; Screening acceptance; Stigma