Patterns of care in the early stages of Alzheimer's disease: impediments to timely diagnosis

OBJECTIVE: Description of factors associated with delay in diagnosis of Alzheimer's disease (AD). DESIGN: A self-administered mail questionnaire. SETTING: Households including someone with AD identified through a nationwide marketing database. PARTICIPANTS: A total of 1480 caregivers of patients diagnosed with AD MEASUREMENTS: There were two measures of delay examined through caregiver reports: (1) duration in years from first AD signs until determination of a definite problem, and (2) duration from problem recognition to first physician consultation. Also, caregivers were categorized by time since patient's diagnosis and relationship to patient. Within-group analyses examined the impact of these characteristics on delay measures. RESULTS: Mean lag in years from observation of first symptoms to problem recognition for those diagnosed in the past 12 months, the past 13 to 48 months, and the past 49 months or more was, respectively, 1.20, 1.56, and 2.25 (P < .001). The timing of diagnosis also influenced lag from problem recognition to first physician consultation so that subgroups with recent, less recent, and distant diagnosis reported delays in years of .82, .84, and 1.31 (P < .001). Caregiver relationship was not significantly related to these lags. Correct diagnosis of AD was reported by caregivers in only 38% of cases at initial physician consultation. CONCLUSIONS: These results suggest that both caregivers and physicians lack ready understanding of the difference between memory processes in aging and AD. Ongoing public and professional education is needed to convey the basics of the diagnosis of AD. In addition, routine screening for dementia should be considered to surmount attitudinal and logistical barriers.