Understanding the eating and drinking experiences of people living with dementia and dysphagia in care homes: A qualitative study of the multiple perspectives of the person, their family, care home staff and Speech and Language Therapists

Abstract

Aims: The aim of this study was to understand the eating and drinking experiences of people living with dementia and dysphagia in care homes from their perspective and those of their family members, formal care staff and Speech and Language Therapists (SLT). Design and methods: In this multi-method qualitative study, semi-structured interviews were carried out with 14 care home residents, seven family members of people living with dementia and dysphagia, and 13 care home staff with a variety of roles. Structured observations, using Dementia Care Mapping, were carried out with eight people living with dementia and dysphagia. Additionally, focus groups were carried out with a total of 31 SLTs. Data were analysed using thematic analysis. Findings: The findings of this study highlighted the changes experienced by people living in care homes, and those living with dementia and dysphagia, in relation to eating and drinking. In particular an impact on identity was found. This study highlighted the challenges of multiple people being involved in dysphagia care, with unclear roles and responsibilities and ineffective channels of communication. Despite the challenges identified, there were also examples of positive eating and drinking experiences through connections with others and the celebration of meaningful events. Conclusion: This was the first study that sought to explore and understand the eating and drinking experiences of people living with dementia and dysphagia from multiple perspectives. The findings highlight the challenges involved and possible solutions to promote a more person-centred approach to eating and drinking for people living with dementia and dysphagia.