14 Development of a resource for family carers of people living with dementia with nutrition and hydration difficulties towards the end-of-life. Issue Volume 11: Issue (2021)Supplement 1 (16th March 2021)

• Record Type: Journal Article
• Authors: Barrado-Martín, Yolanda; Nair, Pushpa; Anantapong, Kanthee; Moore, Kirsten J; Smith, Christina H; Rait, Greta; Sampson, Elizabeth L; Manthorpe, Jill; Davies, Nathan
• Is Part Of: BMJ supportive & palliative care. Volume 11: Issue (2021)Supplement 1
• Page Start: A6
• Page End: A6
• Publication Date: 2021-03-16
• Subjects: Palliative treatment -- Periodicals; Terminal care -- Periodicals; 616.029
• DOI: 10.1136/spcare-2021-PCC.14
• Languages: English
• ISSNs: 2045-435X

Abstract

Abstract : Background: Family carers often struggle to support relatives living with dementia with nutrition and hydration towards the end-of-life. The aim of this study was to co-design with family carers and professionals an information resource to support family carers with this task. Methods: This study consisted of four phases: 1) qualitative systematic review; 2) a scoping review of existing resources; 3) 61 qualitative interviews with people with dementia, professionals, and family carers; 4) data synthesis and co-design development of an information resource. We constructed a matrix synthesising the key findings from phases 1–3, devising themes of the key content across the evidence and providing summaries from each source of evidence. The matrix provided a transparent pathway of the evidence and content for the design process. For the co-design phase 18 participants were recruited, 9 family carers and 9 professionals, split into two mixed groups. Four co-design workshops were conducted (two with each group) to develop the resource. During the workshops participants were presented with a summary of results from the matrix. Using modified nominal group processes and a series of tasks including categorisation and ranking we produced an initial prototype of the resource. The prototype was refined in subsequent co-design meetings and via email with individual participants. Results: The main areas covered within the resource include: eating and drinking difficulties in dementia; end of life; managing swallowing difficulties; points to discuss with professionals in future appointments; support for family carers and; further resources. Information is presented in a booklet with a mix of formats including: diagrams; quotes; top tips; flow charts; and visual images. Conclusions: This practical resource is the first to focus on nutrition and hydration towards the end-of-life in dementia care. This study provides a transparent stepwise approach to developing interventions, key for future similar studies.