Effects of the Namaste Care Family programme on quality of life of nursing home residents with advanced dementia and on family caregiving experiences: study protocol of a cluster-randomised controlled trial

Smaling, Hanneke J A; Joling, Karlijn J.; Ven, Peter M. van de; Bosmans, Judith E.; Simard, Joyce; Volicer, Ladislav; Achterberg, Wilco P.; Francké, Anneke L.; Steen, Jenny T. van der

doi:10.1136/bmjopen-2018-025411

Cited by 26 publications

(37 citation statements)

References 88 publications

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“…Learning from other ongoing international studies in this area could inform recommendations. 31 In terms of implementation processes, the resources created for the intervention delivery were well received, but not greatly referred to following the initial training. Further review of the materials, including the guide, would be undertaken prior to a full trial (see below) at which time consideration of family and volunteer roles could be addressed.…”

Section: Intervention Content and Implementationmentioning

confidence: 99%

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

Froggatt

Best

Bunn

et al. 2020

Health Technol Assess

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Background 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. Objectives 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. Design 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. Setting Nursing homes in England providing care for people with dementia. Participants Residents with advanced dementia (assessed as having a Functional Assessment Staging Test score of 6 or 7), their informal carers and nursing home staff. Intervention 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. Main outcome measures 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. Results 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 (n = 32) were recruited in intervention (n = 18) and control (n = 14) homes. Informal carers (total, n = 12: intervention, n = 5; control, n = 7) and 97 staff from eight sites (intervention, n = 75; control, n = 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. Conclusions A subsequent definitive trial is feasible if there are amendments to the recruitment process, outcome measure choice and intervention specification. Future work 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. Trial registration Current Controlled Trials ISRCTN14948133. Funding This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 24, No. 6. See the NIHR Journals Library website for further project information.

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Section: Intervention Content and Implementationmentioning

confidence: 99%

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

Froggatt

Best

Bunn

et al. 2020

Health Technol Assess

View full text Add to dashboard Cite

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“…NC can improve communication and the relationships families and friends have with the person with dementia 18. NC is a psychosocial intervention that has been implemented variably internationally;18 research is beginning to develop understanding about the intervention and it’s cost implications,19–25 but to our knowledge has only been formally evaluated in care home settings. A hospice in the North East of England has made provisions to provide NC in the person’s own home.…”

Section: Introductionmentioning

confidence: 99%

Namaste care in the home setting: developing initial realist explanatory theories and uncovering unintended outcomes

Dalkin

Lhussier

Kendall³

et al. 2020

BMJ Open

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IntroductionThe End-of-Life Namaste Care Program for People with Dementia, challenges the misconception that people with dementia are a ‘shell’; it provides a holistic approach using the five senses, which can provide positive ways of communicating and emotional responses. It is proposed Namaste Care can improve communication and the relationships families and friends have with the person with dementia. Previously used in care homes, this study is the first to explore the pioneering use of Namaste Care in people’s own homes.ObjectiveTo develop initial programme theories detailing if, how and under which circumstances Namaste Care works when implemented at home.DesignA qualitative realist approach following the RAMESES II guidelines was employed to understand not only whether Namaste Care has positive outcomes, but also how these are generated, for whom they happen and in which circumstances.SettingA hospice in the North East of England, operating in the community, through volunteers.ParticipantsProgramme theories were developed from three focus groups with volunteers implementing Namaste Care (n=8; n=8; n=11) and eight interviews with family carers (n=8).ResultsFour refined explanatory theories are presented: increasing engagement, respite for family carers, importance of matched volunteers and increasing social interaction. It was identified that while Namaste Care achieved some of the same goals in the home setting as it does in the care home setting, it could also function in a different way that promoted socialisation.ConclusionsNamaste Care provides holistic and personalised care to people with both moderate and advanced dementia, improving engagement and reducing social isolation. In the present study carers often chose to use Namaste Care sessions as respite. This was often linked to their frustration of the unavoidable dominance of task-focussed care in daily life. Individualised Namaste Care activities thus led to positive outcomes for both those with dementia and their carers.

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“…The committee declared that no further formal review was needed, since the study was declared exempt from the scope of the Medical Research Involving Human Subjects Act. Detailed information on the study design and the Namaste Care Family program trial is provided elsewhere [17]. Funding sources were not involved in the design and execution of the study or writing of the study results.…”

Section: Methodsmentioning

confidence: 99%

“…Due to the nature of the intervention, the group allocation could not be masked. Sample size calculations indicated that with 192 participants, power sufficed to detect a relevant difference in participants' quality of life [17].…”

Section: Randomization and Sample Sizementioning

confidence: 99%

Cost-effectiveness of the Namaste care family program for nursing home residents with advanced dementia in comparison with usual care: a cluster-randomized controlled trial

Alili

Smaling

Joling

et al. 2020

BMC Health Serv Res

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Background: Dementia is a progressive disease that decreases quality of life of persons with dementia and is associated with high societal costs. The burden of caring for persons with dementia also decreases the quality of life of family caregivers. The objective of this study was to assess the societal cost-effectiveness of Namaste Care Family program in comparison with usual care in nursing home residents with advanced dementia. Methods: Nursing homes were randomized to either Namaste Care Family program or usual care. Outcome measures of the cluster-randomized trial in 231 residents included Quality of Life in Late-Stage Dementia (QUALID) and the Gain in Alzheimer Care Instrument (GAIN) for family caregivers over 12 months of follow-up. Health states were measured using the EQ-5D-3L questionnaire which were translated into utilities. QALYs were calculated by multiplying the amount of time a participant spent in a specific health state with the utility score associated with that health state. Healthcare utilization costs were estimated using standard unit costs, while intervention costs were estimated using a bottom-up approach. Missing cost and effect data were imputed using multiple imputation. Bootstrapped multilevel models were used after multiple imputation. Cost-effectiveness acceptability curves were estimated.

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Effects of the Namaste Care Family programme on quality of life of nursing home residents with advanced dementia and on family caregiving experiences: study protocol of a cluster-randomised controlled trial

Cited by 26 publications

References 88 publications

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

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

Namaste care in the home setting: developing initial realist explanatory theories and uncovering unintended outcomes

Cost-effectiveness of the Namaste care family program for nursing home residents with advanced dementia in comparison with usual care: a cluster-randomized controlled trial

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