Preprint / Version 1

Experiences of Carers and People with Dementia from Ethnic Minority Groups Managing Eating and Drinking at Home in the United Kingdom

Authors

  • Pushpa Nair Research Department of Primary Care and Population Health, University College London (Medical School), Upper Third Floor, Royal Free Hospital, Rowland Hill Street, London NW3 2PF, UK; [email protected] (Y.B.-M.); [email protected] (K.W.); [email protected] (N.D.)
  • Yolanda Barrado-Martín Research Department of Primary Care and Population Health, University College London (Medical School), Upper Third Floor, Royal Free Hospital, Rowland Hill Street, London NW3 2PF, UK; [email protected] (Y.B.-M.); [email protected] (K.W.); [email protected] (N.D.)
  • Kanthee Anantapong Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, 6th Floor, Wing A, Maple House, 149 Tottenham Court Road, London W1T 7NF, UK; [email protected] (K.A.); [email protected] (K.M.); [email protected] (E.S.)
  • Kirsten Moore Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, 6th Floor, Wing A, Maple House, 149 Tottenham Court Road, London W1T 7NF, UK; [email protected] (K.A.); [email protected] (K.M.); [email protected] (E.S.)
  • Christina Smith Language and Cognition, Division of Psychology and Language Sciences, University College London, Chandler House, 2 Wakefield Street, London WC1N 1PF, UK; [email protected]
  • Elizabeth Sampson Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, 6th Floor, Wing A, Maple House, 149 Tottenham Court Road, London W1T 7NF, UK; [email protected] (K.A.); [email protected] (K.M.); [email protected] (E.S.)
  • Jill Manthorpe NIHR Policy Research Unit in Health & Social Care Workforce and NIHR Applied Research Collaborative (ARC) South London, King’s College London, Strand, London WC2 4LL, UK; [email protected]
  • Kate Walters Research Department of Primary Care and Population Health, University College London (Medical School), Upper Third Floor, Royal Free Hospital, Rowland Hill Street, London NW3 2PF, UK; [email protected] (Y.B.-M.); [email protected] (K.W.); [email protected] (N.D.)
  • Nathan Davies Research Department of Primary Care and Population Health, University College London (Medical School), Upper Third Floor, Royal Free Hospital, Rowland Hill Street, London NW3 2PF, UK; [email protected] (Y.B.-M.); [email protected] (K.W.); [email protected] (N.D.)

Keywords:

nutrition, hydration, dementia, eating, drinking, food, ethnic minorities, culture

Abstract

Eating and drinking difficulties, such as loss of appetite and swallowing problems, are common in dementia, but little is known about the experiences of ethnic minority groups who are managing these difficulties at home. The purpose of our study was to explore the meaning of food, the impact of dementia on eating and drinking, and carers’ experiences of support. We undertook semi-structured interviews with 17 carers and people with dementia from ethnic minority backgrounds living in England, using thematic analysis to analyse the data. Food/drink had strong links to identity, culture and emotions. Providing culturally familiar foods, celebrating traditional festivals and supporting previous food-related roles promoted reminiscence, which encouraged the people living with dementia to eat and drink, as did social interactions, although these could lead to distress in those with more advanced dementia. Food choices were also influenced by carer strain, generational differences and the impact of health conditions. Despite a strong sense of duty to care for relatives at home, there was low awareness of community support services. The carers expressed a need for culturally tailored support for managing dementia-related eating and drinking difficulties at home. Healthcare professionals must provide contextually relevant advice to carers, being mindful of how cultural backgrounds can affect dietary choices. Keywords: nutrition, hydration, dementia, eating, drinking, food, ethnic minorities, culture

Author Biographies

Kanthee Anantapong, Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, 6th Floor, Wing A, Maple House, 149 Tottenham Court Road, London W1T 7NF, UK; [email protected] (K.A.); [email protected] (K.M.); [email protected] (E.S.)

Department of Psychiatry, Faculty of Medicine, Prince of Songkla University, Hat Yai, Songkhla 90110, Thailand

Kirsten Moore, Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, 6th Floor, Wing A, Maple House, 149 Tottenham Court Road, London W1T 7NF, UK; [email protected] (K.A.); [email protected] (K.M.); [email protected] (E.S.)

Melbourne Ageing Research Collaboration, National Ageing Research Institute, 34-54 Poplar Road, Royal Melbourne Hospital, Victoria 3050, Australia

Elizabeth Sampson, Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, 6th Floor, Wing A, Maple House, 149 Tottenham Court Road, London W1T 7NF, UK; [email protected] (K.A.); [email protected] (K.M.); [email protected] (E.S.)

Department of Psychological Medicine, Royal London Hospital, East London NHS Foundation Trust, Whitechapel, London E1 1BB, UK

Nathan Davies, Research Department of Primary Care and Population Health, University College London (Medical School), Upper Third Floor, Royal Free Hospital, Rowland Hill Street, London NW3 2PF, UK; [email protected] (Y.B.-M.); [email protected] (K.W.); [email protected] (N.D.)

Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, 6th Floor, Wing A, Maple House, 149 Tottenham Court Road, London W1T 7NF, UK; [email protected] (K.A.); [email protected] (K.M.); [email protected] (E.S.)

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