Psychometric evaluation of the Pain Assessment in Advanced Dementia scale in an acute general hospital setting

BACKGROUND: People with dementia are at risk of unplanned hospital admissions and commonly have painful conditions. Identifying pain is challenging and may lead to undertreatment. The psychometric properties of the Pain Assessment in Advanced Dementia (PAINAD) scale, in medical inpatients with dementia have not been evaluated. METHODS: A secondary data analysis from a longitudinal study of 230 people with dementia admitted to two acute general hospitals in London, UK. Internal consistency, inter-rater reliability, test-retest reliability, concurrent validity, construct validity and discriminant validity of PAINAD were tested at rest and in movement. RESULTS: This predominantly female (65.7%) sample had a mean age of 87.2 (Standard Deviation; SD = 5.92) years. Inter-rater reliability showed an intra-class correlation (ICC) of 0.92 at rest and 0.98 in movement, test-retest reliability ICC was 0.54 at rest and 0.66 in movement. Internal consistency was 0.76 at rest and 0.80 in movement (Cronbach's α). Concurrent validity was weak between PAINAD and a self-rating level of pain (Kendall's Tau; τ = 0.29; p > 0.001). There was no correlation between PAINAD and a measure of behavioural and psychological symptoms of dementia, suggesting no evidence of convergent validity. PAINAD scores were higher during movement than rest, providing evidence of discriminant validity (z = -8.01, p < 0.001). CONCLUSIONS: We found good inter-rater reliability and internal consistency. The test-retest reliability was modest. This study raises concerns about the validity of the PAINAD in general acute hospitals. This provides an insight into pain assessment in general acute hospitals which may inform further refinements of the PAINAD

A systematic review and critical appraisal of quality indicators to assess optimal palliative care for older people with dementia

© The Author(s) 2019Background: A challenge for commissioners and providers of end-of-life care in dementia is to translate recommendations for good or effective care into quality indicators that inform service development and evaluation. Aim: To identify and critically evaluate quality indicators for end-of-life care in dementia. Results: We found 8657 references, after de-duplication. In all, 19 publications describing 10 new and 3 updated sets of indicators were included in this review. Ultimately, 246 individual indicators were identified as being relevant to dementia end-of-life care and mapped against EAPC guidelines. Conclusions: We systematically derived and assessed a set of quality indicators using a robust framework that provides clear definitions of aspects of palliative care, which are dementia specific, and strengthens the theoretical underpinning of new complex interventions in end-of-life care in dementia.Peer reviewedFinal Published versio

Patterns of unplanned hospital admissions among people with dementia: from diagnosis to the end of life

BACKGROUND: hospitalisations are sentinel events for people with dementia. How patterns of unplanned hospital admissions change among people with dementia after diagnosis is relatively unknown. OBJECTIVE: to describe patterns of unplanned hospital admissions of people with dementia from diagnosis until death/study end. METHODS: retrospective cohort study using mental healthcare provider data of people diagnosed with dementia in London, UK (1995-2017), linked to mortality and hospital data. The primary outcome was the rate of unplanned hospital admissions after diagnosis until death/study end. We calculated the cumulative incidence of unplanned hospital admissions. The rates of unplanned hospital admissions and the percentage of time spent as an inpatient were stratified by time from first dementia diagnosis. RESULTS: for 19,221 people with dementia (61.4% female, mean age at diagnosis 81.0 years (standard deviation, SD 8.5)), the cumulative incidence of unplanned hospital admissions (n = 14,759) was 76.8% (95% CI 76.3%-77.3%). Individuals remained in the study for mean 3.0 (SD 2.6) years, and 12,667 (65.9%) died. Rates and lengths of unplanned hospital admissions remained relatively low and short in the months after the dementia diagnosis, increasing only as people approached the end of life. Percentage of time spent as an inpatient was <3% for people who were alive at the study end but was on average 19.6 and 13.3% for the decedents in the last 6 and 12 months of life, respectively. CONCLUSIONS: the steep rise in hospitalisations before death highlights the need for improved community care and services for people with dementia who are approaching the end of life

Improving the care of people with dementia in general hospitals: evaluation of a whole-system train the trainer model

Background: There are concerns about the quality of care that people with dementia receive in the general hospital. Staff report a lack of confidence and inadequate training in dementia care. Methods: A train-the-trainer model was implemented across eight acute hospital trusts in London via a large academic health and science network. Impact was evaluated using mixed methods. Data was collected at (a) Individual level: ‘Sense of Competence in Dementia Care’ (SCID) (b) Ward level: Person Interaction and Environment (PIE) observations (c) Organisation level: use of specific tools i.e. “This Is Me”, (d) Systems level: numbers and types of staff trained per trust. Results were analysed with descriptive statistics and paired t-test with thematic framework analysis for PIE observations. Results: Number of staff trained per trust ranged from 67 to 650 (total 2,020). 1,688 (85%) baseline questionnaires and 456 (27%) 3 month follow-up questionnaires were completed. Mean SCID score was 43.2 at baseline and 50.7 at follow-up (paired t-test, p<0.001). All sub-scales showed a small increase in competence, the largest being for ‘building relationships’. Organisational level data suggested increased use of carer’s passport, “This Is Me” documentation, dementia information leaflets, delirium screening scales and pathways. PIE observations demonstrated improved staff-patient interactions but little change in hospital environments. Conclusions: There was a significant improvement in staffs’ sense of competence in dementia care and the quality of interactions with patients. More hospitals adopted person centred tools and pathways. Work is required to investigate if these changes improve hospital outcomes for people with dementia

Grief in family carers of people living with dementia: A systematic review

OBJECTIVES: Grief research in family carers of people with dementia has increased. We aimed to report the prevalence of pre-death and post-death grief and to synthesize associated factors and the relationship between pre-death factors and post-death grief and services used to manage grief. DESIGN: (Prospero protocol: CRD42020165071) We systematically reviewed literature from PsycINFO, MEDLINE, CINAHL, and ASSIA until April 2020. Effectiveness of intervention data and studies not written in English were excluded; qualitative studies were additionally excluded during study selection. Study quality was assessed using the Mixed Methods Appraisal Tool. Evidence was narratively summarized. PARTICIPANTS: Family non-paid carers of somebody with any dementia type. MEASUREMENTS: Validated measures of pre-death and/or post-death grief. RESULTS: We included quantitative data from 55 studies (44 rated as high quality). Most included solely spouse or adult child carers. Forty-one studies reported pre-death grief, 12 post-death grief, and 6 service use; eight were longitudinal. 17% met the Prolonged Grief Disorder criteria pre-death (n = 1) and 6-26% (n = 4) of participants met the Complicated Grief criteria post-death. Being a spouse, less educated, caring for somebody with advanced dementia, and greater burden and depression were associated with higher pre-death grief. Lower education level and depression were predictive of higher post-death grief. Pre-death factors found to influence post-death grief were grief and depression. Limited service use evidence was reported. CONCLUSION: Awareness of characteristics which increase the likelihood of higher grief can help identify those in need of support. Future research should focus on what supports or services are beneficial to grief experiences

Survival and critical care use among people with dementia in a large English cohort

BACKGROUND: Admitting people with dementia to critical care units may not always lead to a clear survival benefit. Critical care admissions of people with dementia vary across countries. Little is known about the use and trends of critical care admissions of people with dementia in England. OBJECTIVE: To investigate critical care use and survival among people with dementia in a large London catchment area. METHODS: A retrospective cohort study using data from dementia assessment services in south London, UK (2007-20) linked with national hospitalisation data to ascertain critical care admissions. Outcomes included age-sex-standardised critical care use and 1-year post-critical care admission survival by dementia severity (binary: mild versus moderate/severe). We used logistic regression and Kaplan-Meier survival plots for investigating 1-year survival following a critical care admission and linear regressions for time trends. RESULTS: Of 19,787 people diagnosed with dementia, 726 (3.7%) had ≥1 critical care admission at any time after receiving their dementia diagnosis. The overall 1-year survival of people with dementia, who had a CCA, was 47.5% (n = 345). Dementia severity was not associated with 1-year survival following a critical care admission (mild dementia versus moderate-severe dementia odds of 1-year mortality OR: 0.90, 95% CI [0.66-1.22]). Over the 12-year period from 2008 to 2019, overall critical care use decreased (β = -0.05; 95% CI = -0.01, -0.0003; P = 0.03), while critical care admissions occurring during the last year of life increased (β = 0.11, 95% CI = 0.01, 0.20, P = 0.03). CONCLUSIONS: In this cohort, while critical care use among people with dementia declined overall, its use increased among those in their last year of life. Survival remains comparable to that observed in general older populations

Exploring how family carers of a person with dementia manage pre-death grief: A mixed methods study

Objectives: Many family carers of a person with dementia experience pre-death grief. We aimed to identify strategies that help carers manage pre-death grief. We hypothesised that emotion and problem focussed styles would be associated with lower, and dysfunctional coping with higher grief intensity. Methods: Mixed methods observational study using structured and semi-structured interviews with 150 family carers of people with dementia living at home or in a care home. Most participants were female (77%), caring for a parent (48%) or partner/spouse (47%) with mild (25%), moderate (43%) or severe (32%) dementia. They completed the Marwit-Meuser Caregiver Grief Inventory Short Form and the Brief Coping Orientation to Problems Experienced (Brief-COPE) questionnaire. We asked carers to identify strategies used for managing grief. We recorded field notes for 150 interviews and audio-recorded additional interviews with a sub-sample of 16 participants. Results: Correlations indicated that emotion-oriented coping was associated with lower grief (R = −0.341), and dysfunctional coping with higher grief (R = 0.435), with a small association with problem-focused strategies (R = −0.109), partly supporting our hypothesis. Our qualitative themes broadly match the three Brief-COPE styles. Unhelpful strategies of denial and avoidance align with dysfunctional coping strategies. Psychological strategies (including acceptance and humour) and seeking support were consistent with emotion-focused strategies, but we did not identify a theme relating to problem-focused strategies. Conclusion: Most carers identified multiple strategies for processing grief. Carers could readily identify supports and services that they found helpful for managing pre-death grief, yet current services appear under-resourced to meet growing demand. (ClinicalTrials.gov ID: NCT03332979)

Incidence and associations of hospital delirium diagnoses in 85979 people with severe mental illness: a data linkage study

INTRODUCTION: Delirium is an acute neuro-psychiatric disturbance precipitated by a range of physical stressors, with high morbidity and mortality. Little is known about its relationship with severe mental illness (SMI). METHODS: We conducted a retrospective cohort study using linked data analyses of the UK Clinical Practice Research Datalink (CPRD) and Hospital Episodes Statistics (HES) databases. We ascertained yearly hospital delirium incidence from 2000 - 2017 and used logistic regression to identify associations with delirium diagnosis in a population with severe mental illness. RESULTS: The cohort included 249,047 people with severe mental illness with median follow-up time in CPRD of 6.4 years. 85,979 patients were eligible for linkage to HES. Delirium incidence increased from 0.04 (95% CI 0.02 - 0.07) delirium associated admissions per 100 person-years in 2000 to 1.05 (95% CI 0.93 - 1.17) per 100 person-years in 2017, increasing most notably from 2010 onwards. Delirium was associated with older age at study entry (OR 1.05 per year, 95% CI 1.05-1.06), SMI diagnosis of bipolar affective disorder (OR 1.66, 95% CI 1.44 - 1.93) or other psychosis (OR 1.56, 95% CI 1.35 - 1.80) relative to schizophrenia, and more physical comorbidities (OR 1.08 per additional comorbidity of the Charlson Comorbidity Index, 95% CI 1.02 - 1.14). Patients with delirium received more antipsychotic medication during follow-up (1-2 antipsychotics OR 1.65, 95% CI 1.44 - 1.90; >2 antipsychotics OR 2.49, 95% CI 2.12 - 2.92). CONCLUSIONS: The incidence of recorded delirium diagnoses in people with severe mental illness has increased in recent years. Older people prescribed more antipsychotics and with more comorbidities have a higher incidence. Linked electronic health records are feasible for exploring hospital diagnoses such as delirium in SMI