Abstract
AbstractLanguage can shape and reinforce attitudes and stereotypes about living with dementia. This can happen through use of metaphors. However, common metaphors may not capture the complexity of experience of dementia from the perspective of the individual person or a family carer. This paper presents an alternative metaphor – that of a theatre production – based on the strategies used by carers to support people with dementia to live well in the community. We conducted face-to-face semi-structured interviews with 12 family members caring for someone with dementia in the community in Queensland, Australia. Our aim was to explore the strategies these carers used to provide support. Interview recordings were fully transcribed and thematically analysed. We identified positive care-giving strategies that described multiple roles that carers fulfilled as they felt increasingly responsible for day-to-day decision making. Family carers explained how they supported the person with dementia to remain a central character in their life and continued to support the person to be themselves. To achieve this, family carers embodied roles that we identified as similar to roles in a theatre production: director, stage manager, supporting cast, scriptwriter, and costume designer and wardrobe manager. Our metaphor of a theatre production offers a fresh perspective to explore the experience of informal care-giving in the context of dementia.
Highlights
Dementia is a major public health issue with over 50 million people worldwide affected and 10 million new cases each year (World Health Organization, 2017)
This analysis led us to identify a theatre production metaphor because the strategies went beyond individual discrete activities to form an overall production that enabled the carer and person with dementia to maintain their relationship and continue activities and roles that gave their lives meaning
Viewing these roles through the metaphor of a theatre production provides a heuristic device to understand the changing pressures family carers are under when supporting the person with dementia to live their lives
Summary
Dementia is a major public health issue with over 50 million people worldwide affected and 10 million new cases each year (World Health Organization, 2017). Dementia generally refers to a syndrome related to changes in cognitive brain function resulting in a loss of capacity in undertaking activities of everyday life (Burns and Iliffe, 2009). Having dementia does not mean the person is unable to participate actively in community life. It does not mean they cannot participate in making decisions about health and express their perspectives (Mariani et al, 2017). Many people living with dementia actively campaign for recognition of the person with dementia and for changes to the health and social care systems internationally (Swaffer, 2014)
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