Converging approaches to understanding early onset familial Alzheimer disease: A First Nation study.
OBJECTIVE
In 2007, a novel pathogenic genetic mutation associated with early onset familial Alzheimer disease was identified in a large First Nation family living in communities across British Columbia, Canada. Building on a community-based participatory study with members of the Nation, we sought to explore the impact and interplay of medicalization with the Nation's knowledge and approaches to wellness in relation to early onset familial Alzheimer disease.


METHODS
We performed a secondary content analysis of focus group discussions and interviews with 48 members of the Nation between 2012 and 2013. The analysis focused specifically on geneticization, medicalization, and traditional knowledge of early onset familial Alzheimer disease, as these themes were prominent in the primary analysis.


RESULTS
We found that while biomedical explanations of disease permeate the knowledge and understanding of early onset familial Alzheimer disease, traditional concepts about wellness are upheld simultaneously.


CONCLUSIONS
The analysis brings the theoretical framework of "two-eyed seeing" to the case of early onset familial Alzheimer disease for which the contributions of different ways of knowing are embraced, and in which traditional and western ways complement each other on the path of maintaining wellness in the face of progressive neurologic disease.
National Core for Neuroethics, Department of Medicine, University of British Columbia, Vancouver, BC, Canada; Center for Ethics and Humanities in the Life Sciences, College of Human Medicine, Michigan State University, East Lansing, MI, USA.
Laura Y
LY
Cabrera
Division of Geriatric Medicine, Faculty of Medicine, University of British Columbia, Vancouver, BC, Canada; Clinic for Alzheimer Disease and Related Disorders, University of British Columbia, Vancouver, BC, Canada.
B Lynn
BL
Beattie
Clinic for Alzheimer Disease and Related Disorders, University of British Columbia, Vancouver, BC, Canada; Department of Medical Genetics, Faculty of Medicine, University of British Columbia, Vancouver, BC, Canada.
Emily
E
Dwosh
National Core for Neuroethics, Department of Medicine, University of British Columbia, Vancouver, BC, Canada.
Judy
J
Illes
Early onset familial Alzheimer disease; First Nation; crosscultural neuroethics; geneticization; medicalization; two-eyed seeing