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14 Development of a resource for family carers of people living with dementia with nutrition and hydration difficulties towards the end-of-life
  1. Yolanda Barrado-Martín1,
  2. Pushpa Nair1,
  3. Kanthee Anantapong2,3,
  4. Kirsten J Moore2,4,
  5. Christina H Smith5,
  6. Greta Rait1,
  7. Elizabeth L Sampson2,6,
  8. Jill Manthorpe7 and
  9. Nathan Davies1,2
  1. 1Research Department of Primary Care and Population Health, UCL
  2. 2Marie Curie Palliative Care Research Department, UCL
  3. 3Department of Psychiatry, Prince of Songkla University
  4. 4National Ageing Research Institute, Parkville, Victoria, Australia
  5. 5Language and Cognition, Division of Psychology and Language Sciences, UCL
  6. 6Barnet Enfield and Haringey Mental Health Trust Liaison Team, North Middlesex University Hospital
  7. 7NIHR Policy Research Unit in Health and Social Care Workforce Research Unit, and NIHR Applied Research Collaborative (ARC) South London, King’s College London


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.

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