Understanding Chinese–Canadian pathways to a diagnosis of dementia through a critical-constructionist lens

Abstract

Efforts to understand pathways to a diagnosis of Alzheimer's Disease and Related Dementias (ADRD) are important in light of the benefits of early diagnosis to both patients and families, but very little is known about the ways in which persons with dementia and their family caregivers experience this pathway from the point of initial symptom recognition by family or friends to formal diagnosis seeking, particularly for immigrant older adults. Our team employed qualitative methods and a critical constructionist and intersectional framework to understand this experience from the perspectives of ten Chinese–Canadian dyads of persons with dementia and their caregivers. Situating the decisions made by these dyads relative to their intersecting identities and the power structures that inhibit them steered us away from essentializing attributions of their experiences to their ‘culture’ or ethnicity. Early signs of dementia were recognized as such in hindsight. There was no evidence of a strong link between culture and symptom appraisal. Knowledge about dementia, which may be influenced by culture, age, income, knowledge of English, and other determinants of health, played a role in symptom appraisal and help seeking. The role of family caregivers in care-seeking was more highly influenced by structural factors than by traditional Chinese cultural norms about family responsibilities and filial piety. Once caregivers realized that the symptoms and behaviors were ‘problematic,’ they quickly sought out additional information, usually from a family physician. At 1.5years, the time between symptom onset and diagnosis is comparable to or shorter than that reported in research with other cultural groups. Gender-based power imbalance between female family caregivers and male Chinese–Canadian physicians appear to have contributed to delayed investigations and diagnosis. Sensitivity to such imbalances is important when working with older adults and those from more hierarchical cultures. Essentialized portraits of traditional family structures and cultural beliefs may not accurately reflect the variety of lived experiences of the dementia care-seeking by older Chinese immigrants in Canada.