‘The eyes of others’ are what really matters: The experience of living with dementia from an insider perspective

Abstract

Introduction This Dutch study is a qualitative interview study. It aims to contribute to our understanding of the day-to-day experiences by providing an idiographic description of what it means existentially to be in the world as a person affected by a form of dementia, taking into account the contextual nature of these embodied experiences. Methods We used a combination of narrative accounts of people from dementia. We first collected 322 recorded messages of 16 diarists who joined the Dutch Dementia Diaries project. This data was supplemented with 37 interview accounts. Our data analysis was inspired by Van Manen’s existential phenomenological approach. Results The findings show that living with dementia–from a first-person perspective–can be understood as a severely unsettling experience: the people concerned enter a very uncertain, unpredictable and ambiguous period of life. They have to face all kinds of losses that considerably change and disrupt their relationships with 1) their own body, 2) with others and 3) with the surrounding world. This experience is explicated in the following themes: 1a) scrutinizing your disrupted body; 1b) trying to control your bodily loss-of-control; 2a) feeling scrutinized by the suspicious gaze of others; 2b) drifting away from significant others; 2c) having difficulties sharing the struggle; 2d) longing to be taken seriously; 2e) engaging in a world of peers; and 3a) sensing disorientation in an alien place; 3b) feeling closed in within a shrinking space; 3c) trying to control a dreaded future; 3d) trying to control a dreaded future by means of euthanasia. Discussion Our study demonstrates how the people with dementia are affected by ‘the eyes of others’. They longed for a safe and accepting environment, but quite often felt scrutinized by inquisitive and disapproving looks. The outcomes also reveal a connection between dominant social imaginaries and people’s self-understanding of dementia. Much of the suffering stems from living under the shadow of negative imaginaries. Furthermore, our study supports the demand for a socio-relational approach by demonstrating that–from a first-person perspective–dementia can be seen a disorder that is related in particular to questions about selfhood, social relations and social roles. For the people involved, instead of what dementia is , the focus is on what Alzheimer’s disease means and does and how it affects daily life.

Reconceptualising Behavioral and Psychological Symptoms of Dementia: Views of People Living With Dementia and Families/Care Partners

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The experience of lived body as expressed by people with dementia: A systematic meta-synthesis

“…In our material, this emerges when the participants talk about feelings of loss of control, powerlessness and helplessness. As also reported by van Wijngaard et al (2019), participants in the current study try to imitate normalcy in the meeting with loss of control (van Wijngaarden, Alma, & The, 2019). The literature has repeatedly demonstrated that people with dementia express a desire to ‘stay normal’ and stick to routines despite dementia, and that this can be considered a coping strategy (Bjørkløf et al, 2019; Cedervall & Aberg, 2010; Menne, Kinney, & Morhardt, 2002).…”

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“…A complete list of these variables, the rationale for their inclusion, and the data sources for each variable is provided in Table 1 ( Gielen et al, 2009 ; Tanuseputro, 2017 ; Pew Research Center, 2018 ; van Wijngaarden et al, 2019 ; Karumathil and Tripathi, 20202020 ; Hofstede Insights, 2021 ; Inglehart et al, 2021 ; The World Bank, 2021 ; Tran et al, 2021 ).…”

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