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An autoethnographic exploration of the care relationship between a grandchild, their grandma, and understandings of Alzheimer's Disease
My Thesis Statement
My Thesis Statement
In an effort to reframe our understandings of Alzheimer's and it's potentiality, I use autoethnography to explore the qualities found in the caregiving experiences between my grandma who had late stage Alzheimer's and myself. This work hopes to illuminate the dynamic choreographies developed in these care relationships. By incorporating personal artifacts from my time caring for my grandma, I explore the realities of Alzheimer’s, the sources of its burdens, and its potential for multiplicities of personhood and joy. I hope to give authorship and recognition to individuals like my grandma whose final years of life were filled with discoveries, development, and meaningfulness.
Dementia will always have a deeply tragic aspect, both for those who are affected and for those who are close to them. There is, however, a vast difference between a tragedy, in which persons are actively involved and morally committed, and a blind a hopeless submission to fate
Thomas Kitwood, 1997, p. 69
Figure 1. Impact of caregiving on caregivers. Adapted from "2023 Alzheimer’s Disease Facts and Figures" by Alzheimer's Association, 2023, DOI 10.1002/alz.13016.
What is the current state of Alzheimer's Disease?
What is the current state of Alzheimer's Disease?
Over 6.5 million Americans are living with Alzheimer's disease, a form of dementia that causes progressive memory loss and loss of cognitive functions. An additional 11 million family members act as unpaid caregivers for their loved ones with Alzheimer's.
By 2050, over 13.5 million Americans are expected to be diagnosed with Alzheimer's disease.
While we continue to look for curative treatments, the disease and it's burdens are overwhelming families across the country
Figure 2. Cover photo. Adapted from "The Living Death: Alzheimer's In America" by Guy Lushin, 1990
How do we think about Alzheimer's?
How do we think about Alzheimer's?
The United States dominantly understands illness through the biomedical paradigm, which prioritizes the absence of disease in the individual and works towards curative treatments (Ashcroft & Van Katwyk, 2016). This understanding typically disregards patient and caregiver experiences and views Alzheimer's as a fate of suffering with care seen as non-action that is "a cost to bear until a cure is found,” (Seaman, 2018, p. 64; Behuniak, 2011; Kitwood, 1997). While Alzheimer's undeniably causes severe cognitive decline in patients and is a difficult disease to live with and care for, the biomedical paradigm understands Alzheimer's as an experience of intrinsic suffering with a patient who is 'dead' prior to their corporeal death (Behuniak, 2011; Dekker, 2018; (Hughes et al., 2006; Schweda, 2022).
External Link 1: The zombie apocalpyse is happening. Adapted from "Synapses: a blog on Alzheimer's Disease" by Esther Honig
What do these ideas of Alzheimer's do to the caregiving experience?
What do these ideas of Alzheimer's do to the caregiving experience?
By viewing the disease in a strictly pathological sense, caregivers are advised to remember that their loved one has been lost to the disease and the remaining care recipient is an empty shell of the person their family once knew. These framings of the disease are understood as the Death Metaphor and the Tragedy Discourse (Behuniak, 2011; Reed et al., 2017). This can impact the quality of care provided to Alzheimer's patients and also neglects opportunities for meaningful outcomes of care. The biomedical prioritization of curative interventions also casts the labor of family caregivers aside and fails to acknowledge the experience of caregiving as generative and meaningful (Behuniak, 2011; Dekker, 2018; Kitwood, 1997).
Figure 3. Thumbs up for my when in doubt, work it out tattoo. Adapted from my personal collection, 2021, by Renee Richard
How will my work attempt to shift views of Alzheimer's?
How will my work attempt to shift views of Alzheimer's?
While reviewing my own personal experiences from my care relationship with my grandma in the last two years of her life, I began to notice moments where our lived experience challenged and disrupted dominant constructions of Alzheimer’s. This collection of experiences unsettles our predetermined societal and scientific ideas of people living with Alzheimer’s and seeks to exemplify how the caregiving process is generative and meaningful for both the patient and their family.
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