| Learning Objective #1: Describe ethical concerns in the care of persons with Alzheimer's disease | |||
| Learning Objective #2: Evaluate potentially harmful effects of traditional assumptions of quality of life in the care of persons with Alzheimer's disease |
Objective: This study sought to enhance understanding of ethical concerns related to quality of life of persons living with Alzheimer's Disease.
Design: The phenomenological study used a Heideggerian hermeneutical approach.
Population, Sample, Setting, Years: Data were gathered between 2001 and 2002 through snowball sampling and 18 unstructured interviews of persons with Alzheimer's Disease, family caregivers, and professional caregivers.
Concept or Variables Studied Together or Intervention and Outcome Variable(s): The study focused on participants' perspectives of quality of life with Alzheimer's Disease.
Methods: Data were generated through phenomenological interviews with participants, who responded to the prompt: "Can you tell me about a specific incident that stands out in your mind that describes your quality of life?" Interviews were recorded, transcribed verbatim, and analyzed using a Heideggerian hemeneutical framework
Findings: "Creating a Quality of Life through Connected Lives" emerged as a theme. Both patients and caregivers described heart-wrenching decisions they struggled with in the "dailyness" of living with Alzheimer's Disease. Yet, they were able to reframe their vulnerability into an evolving quality of life with shared life narratives.
Conclusion: Globally, society places a high value on critical thinking and decision-making, abilities that are greatly diminished in persons with Alzheimer's Disease. Nurses must develop an ethics of dementia that does not attach moral relevance to mental acuity.
Implications: Across the globe, nurses may see prolonging life and use of scarce resources as futile if the quality of life of persons with Alzheimer's Disease is deemed to be poor. A key question is, "Given this quality of life, what ought we to do?" Extension of traditional assumptions of “quality of life” in dementia to incorporate “quality of interconnected lives” helps to establish an ethics of respect for the individual experience and its connecting relationships.
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Back to 14th International Nursing Research Congress
Sigma Theta Tau International
10-12 July 2003