Understanding the self of people with dementia

Hutmacher, Fabian

doi:10.1007/s00391-020-01718-1

Cited by 9 publications

(10 citation statements)

References 26 publications

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“…The respective scholars emphasized that personhood and personal identity are not just a matter of inner mental states and their continuity in the sense that they simply “evaporate” as soon as memory declines. According to them, personhood and personal identity are instead always embodied and socially situated (Hutmacher, 2021 ; Hughes, 2001 ). Embodiment means the “sedimentation” of an individual’s lived life and personality, with its characteristic temperament, preferences and behaviours, in a set of distinctive facial expressions, inflections, gestures, physical postures, habits, preferences and aversions, and so on.…”

Section: Anthropological Inadequacymentioning

confidence: 99%

Death in Advance? A critique of the “Zombification” of people with dementia

Schweda

Jongsma

2022

HPLS

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This contribution sets out to criticize the prominent metaphor of “death while alive” in the context of dementia. We first explain the historical origin and development as well as the philosophical premises of the image. We then take a closer look at its implications for understanding dementia and societal attitudes and behaviours towards those affected. In doing so, we adopt a life course perspective that seeks to account for the ethical significance of the temporal extension and structure of human life. According to this perspective, individual existence in time is characterized by normative standards of age-appropriate behavior, evaluative standards of a good life, and teleological notions of successful development which require theoretical analysis and ethical discussion. Such a perspective can contribute significantly to spelling out the implications of the metaphor of death while alive and to criticizing their problematic aspects. Indeed, it makes clear that this metaphor aligns dementia with a different point in the human life course, thus ultimately framing it as a kind of deviation from the biographical norm, a disruption in an assumed temporal order of existence. At the same time, the life course perspective can help to understand why this conception involves ethically problematic distortions and blind spots. The resulting considerations allow conclusions with regard to medical and care ethical debates about self-determination, surrogate decision making, and advance directives in the context of dementia. Furthermore, on a theoretical-conceptual level, they also illustrate the importance of a biography- and culture-sensitive approach to philosophical and ethical reasoning in biomedicine and the life sciences.

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Section: Anthropological Inadequacymentioning

confidence: 99%

Death in Advance? A critique of the “Zombification” of people with dementia

Schweda

Jongsma

2022

HPLS

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“…Parallel to the developmental literature, Neisser's (1988) model of the self, specifically with regards to its ecological and interpersonal self, has also been usefully applied in dementia literature (e.g., Caddell & Clare, 2011). Given that these experiential aspects of the self are mostly, but not exclusively, situated in the present moment (Koh & Wang, 2012), they may be particularly applicable to an understanding of selfhood in dementia, since reflective self‐processes related to the sense of self ‘here and now’ seem to be preserved even when temporally extended aspects of self diminish (Hutmacher, 2021). Understanding the corporeal complexity of the self, Kontos’ (2005) notion of embodied selfhood, grounded to the pre‐reflective level of experience, can be seen as the foundation of the ‘ecological self’ in dementia.…”

Section: The Hierarchical Development Of the Selfmentioning

confidence: 99%

“…It is important to note that the self‐manifestations closely linked with experiences of ‘here and now’ are not solely pre‐reflective (see Summa & Fuchs, 2015). Embodied and agentic self‐experience expands beyond primitive aspects of self, incorporating different non‐verbal, yet sophisticated, processes at a sensory and affective level to express the temporally extended history of one's life through nuanced and concrete ways (Hutmacher, 2021; Summa & Fuchs, 2015). This shows that there is an inner depth to the implicit manifestations of the self, which might not have been widely appreciated.…”

Section: The Hierarchical Development Of the Selfmentioning

confidence: 99%

A developmental understanding of the self may provide valuable insight into the experience of selfhood in dementia

Mentzou

Ross

2022

Infant and Child Development

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The self is a complex and multidimensional construct with both reflective and experiential aspects. The experience of selfhood has been well documented in both developmental psychology and dementia research. However, these research fields have rarely come together. This is unfortunate since a lack of sensitive measurement of self in adults with dementia has historically led to erroneous assumptions that people diagnosed with dementia experience total loss of self. Dementia causes profound self‐alterations, particularly associated with gaps in autobiographical and semantic self‐knowledge. However, important experiential manifestations of self may remain intact. Focusing on the emergence of different levels of self‐processes in early childhood, and reflecting on conceptual similarities as well as methodological perspectives, the aim of this article is to explore how developmental approaches may be applied to provide a promising new direction into the experience of selfhood in dementia.

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“…Over 46 million people live with dementia globally, a number expected to triple by 2050 (Mukadam et al, 2019). Although there are different forms of dementia with distinct symptomatology, the pronounced impact on cognition, notably the progressive disintegration of memory, is a common characteristic (Hutmacher, 2021). Changes in individuals' behaviour and psychological experiences are also recognised as being at the core of dementia (D'cruz, 2021).…”

Section: Introductionmentioning

confidence: 99%