My use of authoethnography

In the realm of research on Alzheimer's disease and its impacts on patients and families, there is a lack of research that addresses the intersubjective experiences of the disease as perceived by patients and caregivers (Baumgarten et al., 1992; Kitwood, 1997; Reed et al., 2017). We can begin to address this gap in the research through the use of autoethnography, which is a research approach that describes and analyzes instances of personal experience in order to explain wider cultural and social phenomenons (Ellis & Bochner, 2011). I chose this method of research to share my experiences with care and Alzheimer's in hopes of explaining and reframing dominant ideas of the disease that are often rooted in the biomedical paradigm. 

As explained by Ellis & Bochner (2011), autoethnography is a method of research that does not desire to produce or control dominant narratives. My work does not attempt to suggest that all negative portrayals of Alzheimer's are unequivocally false. instead, it provides a frame of reference through my personal experiences to hopefully inspire ways of thinking that can transcend our rigid ideas of Alzheimer's and meaning that can be found within its journey. Autoethnography is a necessary method of research when it comes to understanding Alzheimer's disease as it provides a look into the private lives of patients and caregivers that are not often included in various studies regarding patient and caregiving health. 

Throughout the past two and a half years, I collected these experiences and artifacts. In early 2023, I began analyzing this data in comparison to various constructions of Alzheimer's disease. I began to use write in the style of autoethnographic vignettes and sorted these vignettes and artifacts into various themes. These themes then became the pages of my autoethnography: Diagnoses & Aftershocks, It's not a Catastrophe, Dancing Queen, and Experiencing Life through Hospice. 

I then translated my writing into this website format through Google Suites. 

What are artifacts?

This work is established on the analysis of personal artifacts that were gathered throughout my caregiving journey with my grandma. According to the NYU artifact guide, artifacts are something “created by humans” that are often objects from a specific moment or period of time. An artifact contains information about its “creator” and “provides insight into the customs, preferences, styles, special occasions, work, and play, of the culture in which it was created,” (2023). The artifacts in this autoethnography are digital objects such as videos, images, and playlists that were created by my grandma and myself throughout our caregiving journey.

How do my artifacts provide insight into the experience of Alzheimer's?

Kitwood argues that there are multple ways of being able to understand the experiences of people with Alzheimer's, one of them being careful and inventive attention paid to the actions and words of patients in their daily life (1997). My artifacts allow me to reflect on past experiences of my grandma and I and analyze the meaningful qualities of personhood and care that appeared throughout our relationship.

Personal Method to the Project

By incorporating analysis of these artifacts, my autoethnography investigates our cultivated culture of Alzheimer’s care which stands in objection to the paradigms that depict Alzheimer’s as a living death without personhood. The qualities of my personal artifacts are used to reject typical understandings of Alzheimer’s and instead explore a culture of Alzheimer’s that is curated through the appreciation of our experiences. By examining artifacts, I explore my grandma as an author, creator, and engaged actor of the culture we created. While she has since passed away and couldn’t physically write for years prior to her death, artifactual examination lets us bring attention to her experience and voice as a creator of these moments that reject understandings of Alzheimer’s as a living death void of potentiality or personhood.

Ethical Considerations

By incorporating analysis of these artifacts, my autoethnography investigates our cultivated culture of Alzheimer’s care which stands in objection to the paradigms that depict Alzheimer’s as a living death without personhood. The qualities of my personal artifacts are used to reject typical understandings of Alzheimer’s and instead explore a culture of Alzheimer’s that is curated through the appreciation of our experiences. By examining artifacts, I explore my grandma as an author, creator, and engaged actor of the culture we created. While she has since passed away and couldn’t physically write for years prior to her death, artifactual examination lets us bring attention to her experience and voice as a creator of these moments that reject understandings of Alzheimer’s as a living death void of potentiality or personhood.