The Minimum Clinically Important Difference on the Sleep Disorders Inventory for People with Dementia

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 important difference MCID to be equal to four points. We note the clinicians and carers opinions from the Delphi process determined the MCID to be lower at three points

Monetary costs of agitation in older adults with Alzheimer's disease in the UK: prospective cohort study

While nearly half of all people with Alzheimer's disease (AD) have agitation symptoms every month, little is known about the costs of agitation in AD. We calculated the monetary costs associated with agitation in older adults with AD in the UK from a National Health Service and personal social services perspective

Comparing proxy rated quality of life of people living with dementia in care homes

Background: Improving quality of life (QOL) for people with dementia is a priority. In care homes, we often rely on proxy ratings from staff and family but we do not know if, or how, they differ in care homes. Methods: We compared 1056 pairs of staff and family DEMQOL-Proxy ratings from 86 care homes across England. We explored factors associated with ratings quantitatively using multilevel modelling and, qualitatively, through thematic analysis of 12 staff and 12 relative interviews. Results: Staff and family ratings were weakly correlated (ρs = 0.35). Median staff scores were higher than family's (104 v. 101; p < 0.001). Family were more likely than staff to rate resident QOL as ‘Poor’ (χ2 = 55.91, p < 0.001). Staff and family rated QOL higher when residents had fewer neuropsychiatric symptoms and severe dementia. Staff rated QOL higher in homes with lower staff:resident ratios and when staff were native English speakers. Family rated QOL higher when the resident had spent longer living in the care home and was a native English. Spouses rated residents’ QOL higher than other relatives. Qualitative results suggest differences arise because staff felt good care provided high QOL but families compared the present to the past. Family judgements centre on loss and are complicated by decisions about care home placement and their understandings of dementia. Conclusion: Proxy reports differ systematically between staff and family. Reports are influenced by the rater:staff and family may conceptualise QOL differently

Caring for relatives with agitation at home: a qualitative study of positive coping strategies

Background Trials of psychological interventions for reducing agitation in people with dementia living at home have been unsuccessful. Aims To inform future interventions by identifying successful strategies of family carers with relatives with dementia and agitation living at home. Method Qualitative in-depth individual interviews were performed with 18 family carers. We used thematic analysis to identify emerging themes. Results Carers described initial surprise and then acceptance that agitation is a dementia symptom and learned to respond flexibly. Their strategies encompassed: prevention of agitation by familiar routine; reduction of agitation by addressing underlying causes and using distraction; prevention of escalation by risk enablement, not arguing; and control of their emotional responses by ensuring their relative’s safety then walking away, carving out some time for themselves and using family and services for emotional and practical help. Conclusions These strategies can be manualised and tested in future randomised controlled trials for clinical effectiveness in reducing agitation in people with dementia living at home

Becoming or remaining agitated: the course of agitation in people with dementia living in care homes: the English longitudinal Managing Agitation and Raising Quality of Life (MARQUE) study

Care home residents with dementia often have accompanying agitation. We investigated agitation’s course at 5 time-points in 1,424 people with dementia over 16 months in 86 English care homes. We categorized baseline agitation symptoms on the Cohen-Mansfield Agitation Inventory (CMAI) into none (CMAI = 29; 15%), subclinical (CMAI = 30–45; 45%), or clinically-significant (CMAI > 45; 40%). 88% of those with no agitation at baseline remained free of clinically-significant agitation at all follow-ups. Seventy percent of those exhibiting clinically-significant agitation at baseline had clinically-significant agitation at some follow-ups. Over a 16-month observation period, this study finds many care home residents with dementia never develop clinically significant agitation and interventions should be for treatment not prevention

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

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

Burnout in UK care home staff and its effect on staff turnover: MARQUE English national care home longitudinal survey

BACKGROUND: staff burnout and turnover lead to care home residents receiving poorer quality care. Burnout is thought to cause turnover, but this has never been investigated. We know little about which care home staffs are burnt out. AIMS: to explore burnout's relationship with staff turnover and prevalence and predictors of burnout. METHOD: we calculated the relationship between Maslach Burnout Inventory scores and future staff turnover (12-month number of staff leaving/number employed). We explored staff, resident and care home predictors of burnout, measured as emotional exhaustion (EE), depersonalisation (DP) and personal accomplishment (PA). RESULTS: two-thousand sixty-two care staff in 97 care home units participated. Median yearly staff turnover was 22.7%, interquartile range (IQR) 14.0-37.7%. Care staff recorded low median burnout (median EE: 14, IQR: 7-22; DP: 1, IQR: 0-5; PA 42, IQR: 36-45). We found no association between staff burnout and turnover rate. Younger staff age was associated with higher burnout (EE coefficient - 0.09; 95% confidence interval (CI): -0.13, -0.05; DP -0.02; 95% CI: -0.04, -0.01; PA 0.05; 95% CI: 0.02, 0.08). Speaking English as a second language predicted higher EE (1.59; 95% CI: 0.32, 2.85), males had higher DP (0.02; 95% CI: 0.01, 0.04) and staff working only night shifts lower PA (-2.08; 95% CI: -4.05, -1.30). CONCLUSIONS: we found no association between care homes staff burnout level and staff turnover rates. It is a myth that burnout levels are high. Interventions for burnout could focus on at-risk groups. Future studies could consider turnover at an individual level

Incidence, age at diagnosis and survival with dementia across ethnic groups in England: A longitudinal study using electronic health records.

INTRODUCTION: We investigated the incidence of diagnosed dementia and whether age at diagnosis and survival afterward differs among the United Kingdom's three largest ethnic groups. METHODS: We used primary care electronic health records, linked Hospital Episode Statistics and mortality data for adults aged ≥65 years. We compared recorded dementia incidence 1997-2018, age at diagnosis, survival time and age at death after diagnosis in White, South Asian, and Black people. RESULTS: Dementia incidence was higher in Black people (incidence rate ratios [IRR] 1.22, 95% CI 1.15-1.30). South Asian and Black people with dementia had a younger age of death than White participants (mean difference for South Asian participants -2.97 years, (95% CI -3.41 to -2.53); and Black participants -2.66 years, (95% CI -3.08 to -2.24). DISCUSSION: South Asian and Black peoples' younger age of diagnosis and death means targeted prevention and care strategies for these groups should be prioritized and tailored to facilitate take-up

Prevalence of and associations with agitation in residents with dementia living in care homes: MARQUE cross-sectional study

BACKGROUND: Agitation is reportedly the most common neuropsychiatric symptom in care home residents with dementia. AIMS: To report, in a large care home survey, prevalence and determinants of agitation in residents with dementia. METHOD: We interviewed staff from 86 care homes between 13 January 2014 and 12 November 2015 about residents with dementia with respect to agitation (Cohen-Mansfield Agitation Inventory (CMAI)), quality of life (DEMQOL-proxy) and dementia severity (Clinical Dementia Rating). We also interviewed residents and their relatives. We used random effects models adjusted for resident age, gender, dementia severity and care home type with CMAI as a continuous score. RESULTS: Out of 3053 (86.2%) residents who had dementia, 1489 (52.7%) eligible residents participated. Fifteen per cent of residents with very mild dementia had clinically significant agitation compared with 33% with mild (odds ratios (ORs)=4.49 95% confidence interval (CI)=2.30) and 45% with moderate or severe dementia (OR=6.95 95% CI=3.63, 13.31 and OR=6.23 95% CI=3.25, 11.94, respectively). More agitation was associated with lower quality of life (regression coefficient (rc)=-0.53; 95% CI=-0.61, -0.46) but not with staffing or resident ratio (rc=0.03; 95% CI=-0.04, 0.11), level of residents' engagement in home activities (rc=3.21; 95% CI=-0.82, 7.21) or family visit numbers (rc=-0.03; 95% CI=-0.15, 0.08). It was correlated with antipsychotic use (rc=6.45; 95% CI=3.98, 8.91). CONCLUSIONS: Care home residents with dementia and agitation have lower quality of life. More staffing time and activities as currently provided are not associated with lower agitation levels. New approaches to develop staff skills in understanding and responding to the underlying reasons for individual resident's agitation require development and testing. DECLARATION OF INTEREST: None. COPYRIGHT AND USAGE: © The Royal College of Psychiatrists 2017. This is an open access article distributed under the terms of the Creative Commons Non-Commercial, No Derivatives (CC BY-NC-ND) license