Nutri-Dem
Research type
Research Study
Full title
Nutrition, hydration and care for people with dementia at the end of life: How can we best support family carers?
IRAS ID
255240
Contact name
Nathan Davies
Contact email
Sponsor organisation
University College London
Clinicaltrials.gov Identifier
Z6364106/2019/01/139 , Data protection number
Duration of Study in the UK
1 years, 3 months, 31 days
Research summary
Background
Difficulties with eating and drinking are common in dementia and may worsen as a person approaches life’s end. Problems may include: recognition of food, difficulty in chewing food, loss of appetite or an inability to swallow. However, many people with dementia towards the end-of-life will not accept food or drink. Our previous work suggests that family and friends who are carers do not have enough information about end-of-life care and in particular around eating, drinking and swallowing difficulties.Aims and objectives
The aims of this study are to explore carers’ understanding of how best to manage eating and drinking at the end of life for someone with dementia; establishing if there are gaps in their knowledge and also identifying what information practitioners provide to carers. We will set the scene for developing a carer resource if this appears desirable.Methods
This study will consist of three phases: 1) identify existing information resources for carers and existing guidelines for practitioners; 2) interview carers to explore how they manage end-of-life eating and drinking with the person with dementia; interview people with mild dementia to understand what information they think should be given to carers when problems get severe; interview practitioners to understand what information they provide to carers and how and in what format; 3) with the help of a group of practitioners and carers consider from the findings of Phase 2 if there is a need to develop a carer resource providing advice and information on eating and drinking at the end-of-life. If that is required, work with this group to develop such a resource. If not, then produce a ‘map’ that carers can access or about resources that are considered helpful.REC name
London - Queen Square Research Ethics Committee
REC reference
19/LO/0369
Date of REC Opinion
12 Apr 2019
REC opinion
Further Information Favourable Opinion