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

Abstract

Introduction People with dementia undergo extensive bodily changes during the course of dementia. Even though this is largely unrecognised in the literature, these changes greatly impact on the persons’ experiences of living with dementia. Consequently, health care professionals and family caregivers need to be aware of the implications this has for delivering care to people with dementia. Hence, a systematic review that synthesises the knowledge on this topic is called for. Method This article presents a qualitative systematic meta-synthesis of interview studies with people with dementia. The theoretical framework of lifeworlds by van Manen provided the context for the study. The Critical Appraisal Skills Program criteria for qualitative studies were used to appraise the studies. Thirty-nine qualitative research studies were included in the review. The analysis followed the principles of interpretive synthesis. Findings When exploring people’s experiences of their body when living with dementia, four categories emerge: (1) My body works; (2) My body betrays me; (3) Understanding and adapting to my body’s changes; and (4) My body in relation to others. Discussion/Conclusion Every individual has their own personal experience of living with dementia; however, if health professionals fail to regard the body as more than an object, this may lead to the person’s alienation both from the relation and from the body. The lived body experience has relational aspects as people with dementia are aware that others observe them, and they also observe others. Others’ behaviour may affect the person’s experience of body; one can perceive oneself as approved or denounced. People with dementia describe that a body that is capable and strong gives access to the world and to participation.

Lifeworld perspectives of people with dementia: a meta-aggregation of qualitative studies

“…The data consist of four meta-syntheses describing the different lifeworld perspectives in accordance with van Manen’s existentials: specifically, lived relations [ 9 ], lived space [ 10 ], lived time [ 11 ] and lived body [ 12 ]. Each of the four published articles contain a specific description of the literature search and a presentation of the inclusion and exclusion process addressed in PRISMA descriptions with corresponding flowcharts [ 13 ].…”

“…The lived experience of dementia has been studied with different approaches, at different stages of the syndrome and in different contexts. Qualitative, interview-based studies have shown that the experience of losing the ability and the right to decide for oneself, lacking control over the body and daily life, and feeling different than others and not ‘normal’ in one’s own and others’ eyes is common when living with dementia [ 9 – 12 ].…”

Lifeworld perspectives of people with dementia: A meta-aggregation of qualitative studies

“…The data consist of four meta-syntheses describing the different lifeworld perspectives in accordance with van Manen's existentials: speci cally, lived relations (9), lived space (10), lived time (11) and lived body (12). Each of the four published articles contain a speci c description of the literature search and a presentation of the inclusion and exclusion process addressed in PRISMA descriptions with corresponding owcharts (13).…”

“…Some managed to actively cope with the diagnosis by making an effort to take control and keep going. d) My body in relation to others: In this perspective, people with dementia described the experience of their bodies as being perceived and seen by others, how they compare their body to other people's bodies and how they feel objecti ed because of the dementia (12).…”

“…The lived experience of dementia has been studied with different approaches using information retrieved from people with dementia at different stages of the disease and living in different contexts. Qualitative, interview-based studies have shown that the experience of losing the ability and the right to decide for oneself, lacking control over the body and daily life, and feeling different than others and not 'normal' in one's own and others' eyes is common when living with dementia (9,10,11,12).…”