Dining with dementia: Continuing to find meaning in eating-related practices as a social experience among family dyads living with typical dementia and posterior cortical atrophy

Abstract

Dementia affects around 850,000 people in the UK. Whilst there is no cure, understanding how to support people to live well with this condition is important. There are ‘many faces of dementia’ and delineating experiences of living with different dementias in daily life is a key step towards understanding how to support people to live well with different symptoms. Supporting eating-related practices in a socio-relational context, referred to in this thesis as ‘dining’ experiences, may help promote the psychological needs related to living well with dementia, including inclusion, occupation and identity. This study aimed to understand how dining experiences and interactions were affected when living with typical dementia (tAD) and posterior cortical atrophy (PCA) and the processes involved in supporting dining experiences. Data collection included in-depth interviews with 20 family dyads (9 tAD; 11 PCA) and video-based observations of four dining interactions. An ‘informed’ grounded theory approach was used and Goffman’s (1974) Frame Analysis was identified to support understanding dining experiences in this study. Goffman’s (1974) theory provides understanding around how people structure and define their social experiences and coordinate these understandings in interaction. Findings revealed how dining could become disrupted when living with tAD and PCA, relating to vulnerabilities in this experience and eating-related practices becoming more about ‘management’. Interacting processes of revising frames, management strategies, optimising opportunities for continuity and engaging in supportive environments, were identified to support maintaining-meaning in dining. Video-based observations extended understanding in terms of contextual factors which shaped experiences and how people used the environment to support their dining interactions. Implications include supporting dining by using a balanced system of various processes to continue to create new meanings and experiences and using the environment to make ‘dining’ central, as opposed to focusing on eating-related practices as a ‘care-task’.