The Lived Experiences Of Individuals In Early-stage Alzheimer's Disease: A Qualitative Study

Abstract

The number of individuals diagnosed and living with Alzheimer’s disease (AD) is increasing, and the disease is considered a public health crisis. To date, the majority of the research has focused on the medical aspects of the illness and caregiving. Researchers have noted a significant gap in the literature- the perspective of the person living with the disease. This qualitative study sought to fill this gap and understand the lived experiences of individuals living in early-stage Alzheimer’s disease. Semi-structured interviews were used to explore various aspects of living in the early-stage from their general experiences living with the illness, perceptions of family, friends, and others because of the disease, as well as encounters with the medical community. Interviews were coded using In-Vivo and Descriptive Coding. An external auditor was involved in building the trustworthiness of the research and findings by the researcher. The themes that surfaced from this study challenged previous research and the mentality that the medical community, caregivers, and society believe that individuals with the disease are inhuman, incapable, and unable to share their experiences with the disease. Participants in this study were not only able but willing to articulate their story of living in the early-stage of AD and encourage others to share their journey. Also, the individuals shared examples of how they are capable of caring for themselves and engage with life, find solutions to the challenges the disease brings, are concerned about the impact of the disease on others, and questioned the disconnect they experienced with the medical community. The findings from the study presented an opportunity for future research to explore additional coping skills, such as technology, for individuals in the early-stage to use to meet the daily challenges the disease presents. This research also highlighted the importance of the readiness of the counseling profession to work with individuals with dementia. This study also addressed the medical community’s need to acknowledge its disconnect in the social aspect of working with persons with the illness. This study ultimately answered the call for qualitative research that explored the lived experiences of individuals in early-stage Alzheimer’s disease. Keywords: Alzheimer’s disease, early-stage, caregiving, research, qualitative