A group intervention to improve quality of life for people with advanced dementia living in care homes: the Namaste feasibility cluster RCT



Froggatt, Katherine, Best, Ashley ORCID: 0000-0002-7268-8735, Bunn, Frances, Burnside, Girvan ORCID: 0000-0001-7398-1346, Coast, Joanna, Dunleavy, Lesley, Goodman, Claire, Hardwick, Ben, Jackson, Clare, Kinley, Julie
et al (show 10 more authors) (2020) A group intervention to improve quality of life for people with advanced dementia living in care homes: the Namaste feasibility cluster RCT. HEALTH TECHNOLOGY ASSESSMENT, 24 (6). 1-+.

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Abstract

<h4>Background</h4>People with advanced dementia who live and die in nursing homes experience variable quality of life, care and dying. There is a need to identify appropriate, cost-effective interventions that facilitate high-quality end-of-life care provision.<h4>Objectives</h4>To establish the feasibility and acceptability to staff and family of conducting a cluster randomised controlled trial of the Namaste Care intervention for people with advanced dementia in nursing homes.<h4>Design</h4>The study had three phases: (1) realist review and (2) intervention refinement to inform the design of (3) a feasibility cluster randomised controlled trial with a process evaluation and economic analysis. Clusters (nursing homes) were randomised in a 3 : 1 ratio to intervention or control (usual care). The nature of the intervention meant that blinding was not possible.<h4>Setting</h4>Nursing homes in England providing care for people with dementia.<h4>Participants</h4>Residents with advanced dementia (assessed as having a Functional Assessment Staging Test score of 6 or 7), their informal carers and nursing home staff.<h4>Intervention</h4>Namaste Care is a complex group intervention that provides structured personalised care in a dedicated space, focusing on enhancements to the physical environment, comfort management and sensory engagement.<h4>Main outcome measures</h4>The two contender primary outcome measures were Comfort Assessment in Dying - End of Life Care in Dementia for quality of dying (dementia) and Quality of Life in Late Stage Dementia for quality of life. The secondary outcomes were as follows: person with dementia, sleep/activity (actigraphy), neuropsychiatric symptoms, agitation and pain; informal carers, satisfaction with care at the end of life; staff members, person-centred care assessment, satisfaction with care at the end of life and readiness for change; and other data - health economic outcomes, medication/service use and intervention activity.<h4>Results</h4>Phase 1 (realist review; 86 papers) identified that a key intervention component was the activities enabling the development of moments of connection. In phase 2, refinement of the intervention enabled the production of a user-friendly 16-page A4 booklet. In phase 3, eight nursing homes were recruited. Two homes withdrew before the intervention commenced; four intervention and two control homes completed the study. Residents with advanced dementia (<i>n</i> = 32) were recruited in intervention (<i>n</i> = 18) and control (<i>n</i> = 14) homes. Informal carers (total, <i>n</i> = 12: intervention, <i>n</i> = 5; control, <i>n</i> = 7) and 97 staff from eight sites (intervention, <i>n</i> = 75; control, <i>n</i> = 22) were recruited over a 6-month period. Recruitment is feasible. Completion rates of the primary outcome questionnaires were high at baseline (100%) and at 4 weeks (96.8%). The Quality of Life in Late Stage Dementia was more responsive to change over 24 weeks. Even where economic data were missing, these could be collected in a full trial. The intervention was acceptable; the dose varied depending on the staffing and physical environment of each care home. Staff and informal carers reported changes for the person with dementia in two ways: increased social engagement and greater calm. No adverse events related to the intervention were reported.<h4>Conclusions</h4>A subsequent definitive trial is feasible if there are amendments to the recruitment process, outcome measure choice and intervention specification.<h4>Future work</h4>In a full trial, consideration is needed of the appropriate outcome measure that is sensitive to different participant responses, and of clear implementation principles for this person-centred intervention in a nursing home context.<h4>Trial registration</h4>Current Controlled Trials ISRCTN14948133.<h4>Funding</h4>This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in <i>Health Technology Assessment</i>; Vol. 24, No. 6. See the NIHR Journals Library website for further project information.

Item Type: Article
Uncontrolled Keywords: Humans, Dementia, Terminal Care, Severity of Illness Index, Feasibility Studies, Quality of Life, Aged, Aged, 80 and over, Nursing Homes, Cost-Benefit Analysis, Technology Assessment, Biomedical, Patient-Centered Care, England, Female, Male, Surveys and Questionnaires
Depositing User: Symplectic Admin
Date Deposited: 18 Feb 2020 13:19
Last Modified: 19 Jan 2023 00:02
DOI: 10.3310/hta24060
Open Access URL: https://www.journalslibrary.nihr.ac.uk/hta/hta2406...
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URI: https://livrepository.liverpool.ac.uk/id/eprint/3075556