Diagnosis-seeking at subspecialty memory clinics: Trigger events

Background: Research has shown that dementia often goes unrecognized, and diagnostic assessment is often further delayed. Understanding families' decision to seek care at memory clinics is relevant to efforts to facilitate early diagnosis. Objective: To examine the population seeking care at two memory clinics and the triggers causing caregivers to seek diagnostic assessment for a family member. Method: We surveyed a consecutive sample of caregivers who accompanied a patient to an assessment at two university memory disorders clinics. Caregivers (n = 416) described events that led them to seek a memory assessment for the patient, as well as who first suggested an assessment and diagnosis received. Results: Changes in the patient (cognitive, personality/behavioral, physical, or unspecified) accounted for 81 % of 903 trigger events reported. Nearly half of the caregivers noting specific patient changes recorded some combination, rather than cognitive changes alone. Of the 338 respondents who noted a change in the patient as a trigger, 85% specified at least one cognitive change, while 40% specified at least one personality/behavioral change. Memory loss was most frequent trigger reported, followed by disorientation and recommendations (lay or professional). Caregivers themselves and non-specialist physicians were the most frequent sources of recommendations noted by all respondents. Conclusion: A broad range of trigger events, beyond cognitive or symptomatic changes, caused caregivers to seek diagnosis at a memory clinic. Awareness of triggers significant to families may help physicians reduce the number and severity of events needed to convince caregivers a memory assessment is indicated.