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

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: la) 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 self-hood, 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.