A manual-based intervention for carers of people with dementia and sleep disturbances: an acceptability and feasibility RCT

Kinnunen, Kirsi M.; Rapaport, Penny; Webster, Lucy; Barber, Julie; Kyle, Simon D.; Hallam, Brendan; Cooper, Claudia; Horsley, Rossana; Pickett, James; Vikhanova, Anastasia; Espie, Colin A.; Livingston, Gill

doi:10.3310/hta22710

Cited by 8 publications

(7 citation statements)

References 65 publications

(58 reference statements)

Supporting

Mentioning

Contrasting

Order By: Relevance

“…The results of the interviews revealed that some of the strategies used by staff to cope with sleep disturbances might be counterproductive. For example, feeding people at night might reinforce their sleep disturbance as they learn it is a time to eat, and their body may expect food, potentially maintaining the cycle of sleep disturbances (Kinnunen et al, 2018). In addition, residents were often given caffeinated tea in the night, which contains about half the caffeine of a cup of coffee (Oddy and O'Sullivan, 2009), more than enough to aggravate sleep disturbances.…”

Section: Discussionmentioning

confidence: 99%

“…In a qualitative study of 12 people with dementia and sleep problems living in their own homes and their family carers, six participants with dementia did not think they had sleep problems, and their carers described how their relatives' lack of awareness made it more difficult to cope with their own sleep being subsequently disturbed (Gibson et al, 2014). Family carers judge their relative's quality of life as lower when the person with dementia has sleep disturbances (Hodgson et al, 2014); however, in another study, carers discussed how sleep problems did not seem to matter too much to their relatives, but affected carers greatly (Kinnunen et al, 2018). However, there is a lack of qualitative research into the impact of sleep disturbances on care home residents with dementia and no previous studies on the opinions of care home staff on this topic.…”

Section: Introductionmentioning

confidence: 98%

See 1 more Smart Citation

The impact of sleep disturbances on care home residents with dementia: the SIESTA qualitative study

Webster¹,

Powell²,

Costafreda

et al. 2020

Int. Psychogeriatr.

Self Cite

View full text Add to dashboard Cite

Objectives: Nearly 40% of care home residents who are living with dementia also have symptoms of disturbed sleep. However, the impact of these disturbances is relatively unknown and is needed to indicate whether interventions are warranted; therefore, we aimed to investigate the impact. Design: One-to-one semi-structured interviews. Settings: Four UK care homes. Participants: We interviewed 18 nurses and care assistants about residents with sleep disturbances. Measurements: We used a topic guide to explore staff experience of sleep disturbance in residents with dementia. The interviews were audio recorded and transcribed and then analyzed thematically by two researchers independently. Results: Staff described that sleep disturbances in most, but not all, residents impacted negatively on the resident, other residents, staff, and relatives. Residents became more irritable or agitated if they had slept badly. They slept in the daytime after a bad night, which then increased their chances of being awake the following night. For some, being sleepy in the day led to falls, missing medication, drinks, and meals. Staff perceived hypnotics as having low efficacy, but increasing the risk of falls and drowsiness. Other residents were disturbed by noise, and staff described stress when several residents had sleep disturbance. Some of the strategies reported by staff to deal with sleep disturbances such as feeding or providing caffeinated tea at night might be counterproductive. Conclusions: Sleep disturbances in care home residents living with dementia negatively affect their physical and psychological well-being. These disturbances also disturb other residents and increase stress in staff.

show abstract

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 98%

The impact of sleep disturbances on care home residents with dementia: the SIESTA qualitative study

Webster¹,

Powell²,

Costafreda

et al. 2020

Int. Psychogeriatr.

Self Cite

View full text Add to dashboard Cite

show abstract

“…The estimated mean sleep duration was 7.6 hours (SD 2.05 hours) and sleep efficiency was 68% (SD 14%), lower than the 78.8% sleep efficiency reported among people with earlier-stage dementia. 179 The average sleep-wake ratio was 4.08 hours (SD 3.22 hours) and the average time of wake after sleep onset was 3.5 hours (SD 1.6 hours). In terms of the participants' circadian rhythm fragmentation, the average intradaily variability was 0.7 (SD 0.2) (high intradaily variability values of close to 1 or higher can indicate the occurrence of daytime naps and/or nocturnal activity episodes).…”

Section: Actigraphymentioning

confidence: 92%

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

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.

show abstract

“…This study used data collected from the DREAMS START project (Dementia RElAted Manual for Sleep; STrAtegies for RelaTives) to determine the MCID on the SDI. DREAMS START was a randomised control trial of the feasibility and acceptability of a multicomponent intervention for people with dementia and sleep disturbances 21,22 . The trial was approved by the London Queen Square Research Ethics Committee (reference number 16/LO/0670).…”

Section: Methodsmentioning

confidence: 99%

“…DREAMS START was a randomised control trial of the feasibility and acceptability of a multicomponent intervention for people with dementia and sleep disturbances. 21,22 The trial was approved by the London Queen…”

Section: Dreams Startmentioning

confidence: 99%

The minimum clinically important difference on the sleep disorders inventory for people with dementia

Webster¹,

Martin²,

Livingston³

2020

Int J Geriat Psychiatry

Self Cite

View full text Add to dashboard Cite

Objectives: Sleep disturbances in dementia causes distress to people with dementia and their family carers and are associated with care home admission. The Sleep Disorders Inventory (SDI) is a validated questionnaire of sleep disturbances in dementia often used to measure treatment effectiveness, but the minimum clinically important difference (MCID) is unknown. Methods: We triangulated three investigative methods to determine the MCID of the SDI. Using data on SDI from a randomised controlled trial (RCT) with 62 participants in an intervention for sleep disorders in dementia, we (1) calculated distribution-based values where MCID = 0.33 of a SD (SD) (2) an anchor based approach using quality of life (measured using DEMQOL-Proxy) as an anchor. We also employed a Delphi consensus process asking 12 clinicians, sleep researchers and family carers to rate which changes on vignettes were equivalent to a MCID. Results: We found that 0.33 SD in the SDI = 4.86. Reduction in SDI total score was not significantly correlated with improvement in DEMQOL-Proxy (Pearson's correlation = −0.01; P = 0.96) score. The Delphi consensus required two rounds to reach a consensus and concluded that changes equivalent to three points on the SDI equated to the MCID. Conclusions: Taking into account both the distribution-based values and the Delphi process we used a whole number at the midpoint and judged the minimum clinically

show abstract

A manual-based intervention for carers of people with dementia and sleep disturbances: an acceptability and feasibility RCT

Cited by 8 publications

References 65 publications

The impact of sleep disturbances on care home residents with dementia: the SIESTA qualitative study

The impact of sleep disturbances on care home residents with dementia: the SIESTA qualitative study

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

The minimum clinically important difference on the sleep disorders inventory for people with dementia

Contact Info

Product

Resources

About