Thursday, July 12, 2007
This presentation is part of : Aging Population Health Strategies
Invisible Evidence: Ways of Knowing in Alzheimer's Disease
Jeanne M. Sorrell, PhD, RN, FAAN, USA
Learning Objective #1: 1. Articulate the importance of coming to know a biographical life of persons living with Alzheimer’s disease.
Learning Objective #2: 2. Describe considerations for health care decisions related to ways of knowing in Alzheimer’s Disease.

Purpose:  This study sought to enhance understanding of the concept of “knowing” as experienced by persons living with Alzheimer's disease.   

Problem:  With devastating loss of memory in Alzheimer’s disease, the characteristics of personhood that embody traditional ways of knowing in society may appear invisible. With good intentions, but limited insight, healthcare professionals may make decisions based on assumptions of a poor quality of life for persons living with Alzheimer’s.  

Theoretical framework:  Carper’s ways of knowing have framed many nursing studies related to empirical, personal, ethical, and aesthetic ways of knowing. Traditionally, quality of life is conceptualized within the biomedical healthcare model, which values cognitive ability as a critical element for quality of life.  Interpretive phenomenology was used in this study to provide a broader interpretation of knowing and give voice to persons living with Alzheimer’s, whose personhood too often appears invisible. 

Methods: This phenomenological study used a Heideggerian hermeneutical approach to gather data through snowball sampling and unstructured interviews with 12 family caregivers and 4 persons with Alzheimer's disease.   Participants responded to the prompt: "Can you tell me about a specific incident that stands out in your mind that describes an ethical concern you have encountered in living with Alzheimer’s?"  Interviews were recorded, transcribed verbatim, and analyzed within an interpretive phenomenological framework. 

Findings and Implications:  "Knowing" emerged as a prominent theme in interviews, as participants described ethical concerns encountered in attempting to have their personhood recognized by others.  One participant’s response illustrates this theme: “When I was told that I had Alzheimer’s, they won’t look me in the eye…I was talking to a professional, and they’re the ones that had the problem!”  Extension of traditional assumptions of  “knowing” to incorporate a non-cognitive knowing can enhance understanding of the quality of interconnected lives in persons living with Alzheimer’s disease.