Using photographs and narratives to contextualise and map the experience of caring for a person with dementia

Abstract

Aim. To capture the meaning and context of how carers adapt and develop their relationships throughout their caring role. Background. Family carers play a pivotal role in supporting and caring for a person living with dementia at home. To date, the majority of social research on carers has focussed upon the stress and burden that such demands evoke, and limited attention has been paid to locating the carer’s own construction of their role with a relationship‐centred approach. This paper attempts to build on this emerging understanding. Design. A participative, qualitative study using photographs and supportive narratives to contextualise and map carer’s experiences of caring for a person with dementia. The study was conducted in one area of South East England, UK with all necessary ethical permission to conduct the study obtained prior to data collection. Method. Data was obtained between May–June 2008 with nine carers recruited from a not for profit organisation based in the UK. Photographs were taken by participants using a 27‐print disposable camera with supporting written narratives provided on six photographs that participants selected to best represent their caring role and relationship. These photographs and supporting text were then shared with other participants in a focus group. Through this process, participants were helped to sort and group the data into narrative themes. Results. From this collaborative process, the group identified four types of caring relationships, these were: recognising (1); transforming (2); stabilising (3); and ‘moving on’ (4). Photographs and the supporting narratives were used to illustrate each type of relationship that helped to give meaning and shape to everyday life. Conclusion. The four types of caring relationships help nurses and other service providers to understand how carers of people with dementia construct and manage their day‐to‐day life. Recognition of a carer’s personhood needs to be acknowledged in order to promote and support their role throughout the caring trajectory. Relevance to clinical practice. Recognition of the knowledge and skills held by carers of people with dementia can help inform professional decision‐making and provide a platform for practice intervention.