Becoming Whole with Dementia, Qualitative Data on the Lived Experience of Dementia

Background

The diagnosis of Alzheimer’s is often perceived as catastrophic. Moreover, as the disease progresses, it is assumed that one ‘loses oneself’. Nonetheless, there is certainly more to the story. Some autobiographies of those living with dementia suggest that despite the major anxieties surrounding the loss of memory, the experience of dementia can involve self‐discovery. J. Lacan put forth the idea that the subject is split by language, or divided into ego and subject of the unconscious. Would the growing loss of language in dementia lesson this subjective split?

Method

Qualitative data from 20 autobiographies of persons diagnosed with dementia was analyzed and compared from a psychoanalytic perspective, using Lacan’s concepts of the split subject (1966) and Other jouissance (1973).

Results

We found that although many writers express anxiety and frustration with growing aphasia, they express great insight into their existence. This is described by some as becoming one’s true whole self: “[W]ith dementia stripping away the layers of cognition and emotion, I’m becoming who I really am.” (Bryden, 2005, p.162) “I am never half full or half empty, I am always me.” (Taylor, 2006, p.106) "[T]hat thing we might call ‘personhood’ remains whole in me”. (Raushi, 2001, p.108)

Some express tranquility: “[A]n extraordinary calm has descended over me. A feeling I have never known before. A secret microcosm that is impossible to turn away from.” (Rose, 2003, p.46) “I have never felt as few anxieties and worries in my life”. (Coffin, 2009, p.79)

Notably, some write about mystical experiences, similar to what Lacan describes as Other jouissance; Bryden (2005) and Raushi (2001) cite this Zen paradigm: “Stop thinking and talking about it and there is nothing you will not be able to know.”

Conclusion

There is far more to the story of dementia than that of loss. If language splits the subject, with its growing absence, the subject becomes less divided. This can be expressed in terms of becoming one’s whole true self, great tranquility, and for some, be described as a mystical experience. Where the ego may be lost, the whole subject can be found.