"All is not lost” - Rethinking the nature of memory and the self in dementia

Abstract

Memory and the self have long been considered intertwined, leading to the assumption that without memory, there can be no self. This line of reasoning has led to the misconception that a loss of memory in dementia necessarily results in a diminished sense of self. Here, we challenge this assumption by considering discrete facets of self-referential memory, and their relative profiles of loss and sparing, across three neurodegenerative disorders: Alzheimer’s disease, semantic dementia, and frontotemporal dementia. By exploring canonical expressions of the self across past, present, and future contexts in dementia, relative to healthy ageing, we reconcile previous accounts of loss of self in dementia, and propose a new framework for understanding and managing everyday functioning and behaviour. Notably, our approach highlights the multifaceted and dynamic nature in which the temporally-extended self is likely to change in healthy and pathological ageing, with important ramifications for development of person-centred care. Collectively, we aim to promote a cohesive sense of self in dementia across past, present, and future contexts, by demonstrating how, ultimately, ‘All is not lost’.