The diagnosis of dementia often occurs well after the onset of the disease. Studies of help-seeking behavior may help illuminate why delays occur.
Specific aims: (1) To describe pathways to diagnosis from the perspective of family caregivers and (2) to compare help-seeking patterns and experiences across three ethnic groups.
Methods: Semi-structured qualitative interviews were conducted with 39 ethnically diverse family dementia caregivers. Interviews were coded for help-seeking events (initial help-seeking, referrals to secondary helpers, and site of final diagnosis), pathway types, and adverse experiences within the healthcare system along pathways to diagnosis.
Results: Help-seeking was most often initiated by family members or formal care providers (ie, healthcare providers or social workers), usually in outpatient primary care settings but also elsewhere (eg, social service agencies, hospitals). "Secondary" formal helpers were often involved, usually through self-referral by families rather than by healthcare providers. While most families reported receiving a "final" diagnosis, a small minority of predominantly Chinese-American families did not. Four distinct pathways to diagnosis were identified and found to vary significantly (p < 0.03) across the three ethnic groups, which we label as smooth pathways, crisis events pathways, fragmented pathways, and dead-end pathways. Adverse experiences in the healthcare system were common and included unsatisfactory diagnosis disclosure and explanation, inadequate workup, uncaring or insensitive attitude, language barriers, and discrimination.
Conclusions: Cross-ethnic differences were found in both pathway types and in adverse experiences.