Authors' objectives: This project aims to identify if it is feasible to: (1) introduce a new programme (Namaste Care) to improve the quality of dying at the end of life for care home residents with dementia; (2) undertake a trial in care homes to establish if Namaste Care makes a difference to the care of people dying with advanced dementia. Background to the research For many people with dementia, a move into a care home occurs. This is likely to be where they die. People with dementia rarely access specialist palliative care services, although they have palliative care needs. Namaste Care has been developed to provide care for people with advanced dementia at the end of life. It takes place in a prepared group space, where people receive daily individualised comfort assessment and care. A structured approach to care, provided by the usual staff (four hours a day, seven-days a week), engages the individual's senses, offering meaningful activities that reflect their interests. There is some evidence from small studies that Namaste Care is beneficial for people with dementia. We do not know if this programme achieves better results than usual approaches to end of life care. Design and methods used Phase 1 will involve a review of the literature, to identity the effective features of programmes that provide end of life care in care homes for people with advanced dementia. In Phase 2, Namaste Care resource materials will be reviewed by care home staff and family members. Phase 3, the main study, is a feasibility trial, process and economic evaluation. It will be undertaken in 8 care homes; 8 people with advanced dementia will be recruited in each facility. Six care homes will deliver Namaste care and two will continue to deliver their usual care. The main outcome of this study is to establish the appropriateness, acceptability, timing and use of instruments for a full trial. A number of measures will be assessed: quality of dying, quality of life, sleep and activity (using an actiwatch), behavioural symptoms, pain, infections, use of clinical services. Family and staff outcome measures assess satisfaction and experiences of care. Economic data will be collected using new tools, being tested to see if they are appropriate for assessing this type of care. Data will be collected initially over 4 weeks, as the programme has a quick effect for people with advanced dementia, and then for up to 6 months or until the resident dies. The process evaluation will assess the context for change in each NCH, whether the programme and research have been delivered as planned, and how acceptable they are to family and staff. Data will be collected by the use of activity logs, observations of care, and staff and family interviews. Analysis will look at the acceptability of the programme and which outcome measures are most easily adhered to and provide the most relevant data. Patient and public involvement Consultation has been undertaken with two members of the Alzheimer's Society Research Network, who have experience as relatives of people with dementia living and dying in a care home. They have agreed to be co-applicants on the study and will facilitate a Public Involvement Panel, involving family carer representatives. The PIP will provide advice on documents, and also introduce the study to relatives in care homes. Dissemination The results of this study will be shared through conference presentations and journal publications.

Project Status: Completed

URL for project: https://www.journalslibrary.nihr.ac.uk/programmes/hta/151011/#/

Year Published: 2020

URL for published report: https://www.journalslibrary.nihr.ac.uk/programmes/hta/151011/#/

English language abstract: An English language summary is available

Publication Type: Not Assigned

Country: England, United Kingdom

Organisation Name: NIHR Health Technology Assessment programme

Contact Address: NIHR Journals Library, National Institute for Health and Care Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science Park, Southampton SO16 7NS, UK

Contact Name: journals.library@nihr.ac.uk

Contact Email: journals.library@nihr.ac.uk

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