Wellness within illness and the capacity for happiness in people with Alzheimer's disease: Using photo-elicitation method to compare the perspectives of people with Alzheimer's disease and their caregivers

Abstract

Quality of life for people with dementia is a topic of great concern and study, due in part to the growing number of people diagnosed with Alzheimer's disease and other dementias. Happiness is an important aspect of well-being and quality of life, yet the subjective experience of happiness in dementia has not been explored. The purpose of this study was to examine the subjective experience of happiness for persons with mild to moderate Alzheimer's disease from the perspective of the person living with the disease and their caregiver through the use of photo-elicitation with autodriving methodology. A sample of 12 persons with mild to moderate Alzheimer's disease were given cameras and asked to take photographs representing happiness. The 12 caregivers were invited to participate in the study; 10 agreed. Caregivers were given cameras and asked to take photographs representing happiness for their care recipient partner. The photographs served as the basis for one-on-one interviews between the participant and the researcher. In this study, persons with Alzheimer's disease identified long-held values as important to their happiness, including connection to others, nature, transcendence, preservation of self, and joyful moments. Individual differences and nuanced interpretations were noted within each identified value. Many of the same images were taken by the caregivers. However, study results point to the caregiver's general lack of awareness and understanding of the presence and role of values. The implications of this work are significant in that they help to advance our understanding of happiness in Alzheimer's disease and propel us forward toward the development of measures and interventions supportive of quality of life in this population. Additionally, the findings of this study further our understanding of the inter-subjective relationship of the person with Alzheimer's disease and the caregiver, underscoring the need to support both members of the dyad through person-and family-centered care to improve quality of life and maintain the personhood of both the person with Alzheimer's disease and the caregiver. Finally, this study broadens our understanding of Alzheimer's disease from the current paradigm of despair and loss to one that includes the possibility of happiness and well-being.