• Behavioural and psychiatric symptoms in people with dementia admitted to the acute hospital: Prospective Cohort study

      Sampson, E.L.; White, N.; Leurent, B.; Scott, S.; Lord, Kathryn; Round, J.; Jones, L. (2014-09)
      Background Dementia is common in older people admitted to acute hospitals. There are concerns about the quality of care they receive. Behavioural and psychiatric symptoms of dementia (BPSD) seem to be particularly challenging for hospital staff. Aims To define the prevalence of BPSD and explore their clinical associations. Method Longitudinal cohort study of 230 people with dementia, aged over 70, admitted to hospital for acute medical illness, and assessed for BPSD at admission and every 4 (± 1) days until discharge. Other measures included length of stay, care quality indicators, adverse events and mortality. Results Participants were very impaired; 46% at Functional Assessment Staging Scale (FAST) stage 6d or above (doubly incontinent), 75% had BPSD, and 43% had some BPSD that were moderately/severely troubling to staff. Most common were aggression (57%), activity disturbance (44%), sleep disturbance (42%) and anxiety (35%). Conclusions We found that BPSD are very common in older people admitted to an acute hospital. Patients and staff would benefit from more specialist psychiatric support.
    • CoMPASs: IOn programme (Care Of Memory Problems in Advanced Stages of dementia: Improving Our Knowledge): protocol for a mixed methods study

      Jones, L.; Harrington, J.; Scott, S.; Davis, S.; Lord, Kathryn; Vickerstaff, V.; Round, J.; Candy, B.; Sampson, E.L. (2012-01-01)
      Introduction: Approximately 700 000 people in the UK have dementia, rising to 1.2 million by 2050; one-third of people aged over 65 will die with dementia. Good end-of-life care is often neglected, and detailed UK-based research on symptom burden and needs is lacking. Our project examines these issues from multiple perspectives using a rigorous and innovative design, collecting data which will inform the development of pragmatic interventions to improve care. Methods and analysis: To define in detail symptom burden, service provision and factors affecting care pathways we shall use mixed methods: prospective cohort studies of people with advanced dementia and their carers; workshops and interactive interviews with health professionals and carers, and a workshop with people with early stage dementia. Interim analyses of cohort data will inform new scenarios for workshops and interviews. Final analysis will include cohort demographics, the symptom burden and health service use over the follow-up period. We shall explore the level and nature of unmet needs, describing how comfort and quality of life change over time and differences between those living in care homes and those remaining in their own homes. Data from workshops and interviews will be analysed for thematic content assisted by textual grouping software. Findings will inform the development of a complex intervention in the next phase of the research programme. Ethics and dissemination: Ethical approval was granted by National Health Service ethical committees for studies involving people with dementia and carers (REC refs. 12/EE/0003; 12/LO/0346), and by university ethics committee for work with healthcare professionals (REC ref. 3578/001). We shall present our findings at conferences, and in peer-reviewed journals, prepare detailed reports for organisations involved with end-of-life care and dementia, publicising results on the Marie Curie website. A summary of the research will be provided to participants if requested.
    • Context, mechanisms and outcomes in end of life care for people with advanced dementia

      Kupeli, N.; Leavey, G.; Moore, K.; Harrington, J.; Lord, Kathryn; King, M.; Nazareth, I.; Sampson, E.L.; Jones, L. (2016-03-10)
      Background: The majority of people with dementia in the UK die in care homes. The quality of end of life care in these environments is often suboptimal. The aim of the present study was to explore the context, mechanisms and outcomes for providing good palliative care to people with advanced dementia residing in UK care homes from the perspective of health and social care providers. Method: The design of the study was qualitative which involved purposive sampling of health care professionals to undertake interactive interviews within a realist framework. Interviews were completed between September 2012 and October 2013 and were thematically analysed and then conceptualised according to context, mechanisms and outcomes. The settings were private care homes and services provided by the National Health Service including memory clinics, mental health and commissioning services in London, United Kingdom. The participants included 14 health and social care professionals including health care assistants, care home managers, commissioners for older adults’ services and nursing staff. Results: Good palliative care for people with advanced dementia is underpinned by the prioritisation of psychosocial and spiritual care, developing relationships with family carers, addressing physical needs including symptom management and continuous, integrated care provided by a multidisciplinary team. Contextual factors that detract from good end of life care included: an emphasis on financial efficiency over person-centred care; a complex health and social care system, societal and family attitudes towards staff; staff training and experience, governance and bureaucratisation; complexity of dementia; advance care planning and staff characteristics. Mechanisms that influence the quality of end of life care include: level of health care professionals’ confidence, family uncertainty about end of life care, resources for improving end of life care and supporting families, and uncertainty about whether dementia specific palliative care is required. Conclusions: Contextual factors regarding the care home environment may be obdurate and tend to negatively impact on the quality of end of life dementia care. Local level mechanisms may be more amenable to improvement. However, systemic changes to the care home environment are necessary to promote consistent, equitable and sustainable high quality end of life dementia care across the UK care home sector
    • Development of a model for integrated care at the end of life in advanced dementia: A whole systems UK-wide approach

      Jones, L.; Candy, B.; Davis, S.; Elliott, M.; Gola, A.; Harrington, J.; Kupeli, N.; Lord, Kathryn; Moore, K.; Scott, S.; et al. (2016)
      Background: The prevalence of dementia is rising worldwide and many people will die with the disease. Symptoms towards the end of life may be inadequately managed and informal and professional carers poorly supported. There are few evidence-based interventions to improve end-of-life care in advanced dementia. Aim: To develop an integrated, whole systems, evidence-based intervention that is pragmatic and feasible to improve end-of-life care for people with advanced dementia and support those close to them. Design: A realist-based approach in which qualitative and quantitative data assisted the development of statements. These were incorporated into the RAND/UCLA appropriateness method to achieve consensus on intervention components. Components were mapped to underlying theory of whole systems change and the intervention described in a detailed manual. Setting/participants: Data were collected from people with dementia, carers and health and social care professionals in England, from expert opinion and existing literature. Professional stakeholders in all four countries of the United Kingdom contributed to the RAND/UCLA appropriateness method process. Results: A total of 29 statements were agreed and mapped to individual, group, organisational and economic/political levels of healthcare systems. The resulting main intervention components are as follows: (1) influencing local service organisation through facilitation of integrated multi-disciplinary care, (2) providing training and support for formal and informal carers and (3) influencing local healthcare commissioning and priorities of service providers. Conclusion: Use of in-depth data, consensus methods and theoretical understanding of the intervention components produced an evidence-based intervention for further testing in end-of-life care in advanced dementia.
    • Evidence-based intervention to reduce avoidable hospital admissions in care home residents (the Better Health in Residents in Care Homes (BHiRCH) study): Protocol for a pilot cluster randomised trial

      Sampson, E.L.; Feast, A.; Blighe, Alan J.; Froggatt, K.; Hunter, R.; Marston, L.; McCormack, B.; Nurock, S.; Panca, M.; Powell, Catherine; et al. (2019-05)
      Introduction: Acute hospital admission is distressing for care home residents. Ambulatory care sensitive conditions, such as respiratory and urinary tract infections, are conditions that can cause unplanned hospital admission but may have been avoidable with timely detection and intervention in the community. The Better Health in Residents in Care Homes (BHiRCH) programme has feasibility tested and will pilot a multicomponent intervention to reduce these avoidable hospital admissions. The BHiRCH intervention comprises an early warning tool for noting changes in resident health, a care pathway (clinical guidance and decision support system) and a structured method for communicating with primary care, adapted for use in the care home. We use practice development champions to support implementation and embed changes in care. Methods and analysis: Cluster randomised pilot trial to test study procedures and indicate whether a further definitive trial is warranted. Fourteen care homes with nursing (nursing homes) will be randomly allocated to intervention (delivered at nursing home level) or control groups. Two nurses from each home become Practice Development Champions trained to implement the intervention, supported by a practice development support group. Data will be collected for 3 months preintervention, monthly during the 12-month intervention and 1 month after. Individual-level data includes resident, care partner and staff demographics, resident functional status, service use and quality of life (for health economic analysis) and the extent to which staff perceive the organisation supports person centred care. System-level data includes primary and secondary health services contacts (ie, general practitioner and hospital admissions). Process evaluation assesses intervention acceptability, feasibility, fidelity, ease of implementation in practice and study procedures (ie, consent and recruitment rates).
    • Improving the end of life care for people with advanced dementia and their informal carers: a method of developing a complex intervention using a whole systems UK wide approach.

      Jones, L.; Harrington, J.; Lord, Kathryn; Davis, S.; Chan, D.; Vickerstaff, V.; Scott, S.; Candy, B.; Round, J.; Sampson, E.L. (2014)
      Complete abstract: FC 16. Background: We aimed to develop a complex intervention to improve end of life care (EOLC) for people with advanced dementia and their carers. We collected data from 4 sources: literature review; qualitative data from health and social care professionals, carers and people with early dementia; quantitative data from people with advanced dementia and their carers; review of UK health and social care policy documents. Method and results: To develop the intervention we synthesised these data. 49 emerging statements were considered in workshops with health and social care professionals across UK to achieve consensus using the RAND Appropriateness Method (RAM) to develop components of the intervention. 1. Prior to workshops we sent invitees the RAM form consisting of 49 statements and asked them to rate these on a scale of 1-9 for appropriateness. 2. At the workshops statements rated as ‘uncertain’ or ‘inappropriate’ were discussed and all 49 items were rated again. 3. Analysis resulted in the retention of 29 statements rated as appropriate. 4. Post workshop attendees were sent the RAM form and asked to rate 29 statements for necessity. All 29 statements were rated as necessary and retained then mapped onto impact theories (Grol 2007) comprised of individual, social interaction, organisational or political/ economic context, and categorised as enablers and barriers for an intervention. Three core intervention components emerged: 1. Integrated systems and approaches to the delivery of careoperational plan 2. Education, training and support for health and social care professionals and carers - utilisation plan 3. Political and economic context dependent on reimbursement and contracting through CCG commissioning. Discussion: The next phase is to pilot components 1 and 2 of the intervention in a naturalistic experiment in one inner city and one suburban locality at different stages of development for services for EOLC for people with dementia and their carers.
    • The management of behavioural and psychological symptoms of dementia in the acute general medical hospital: A longitudinal cohort study

      White, N.; Leurent, B.; Lord, Kathryn; Scott, S.; Jones, L.; Sampson, E.L. (2017)
      Background: The acute hospital is a challenging place for a person with dementia. Behavioural and psychological symptoms of dementia (BPSD) are common and may be exacerbated by the hospital environment. Concerns have been raised about how BPSD are managed in this setting and about over reliance on neuroleptic medication. This study aimed to investigate how BPSD are managed in UK acute hospitals. Method(s): A longitudinal cohort of 230 patients with dementia admitted to two acute NHS hospitals. BPSD were measured every four days (Behave-AD scale), as well as documentation of pharmacological prescriptions and non-pharmacological management. Results: The overall prevalence of BPSD was 75%, with aggression and activity disturbance being the most common. Antipsychotics were prescribed for 28 (12%) patients; 70% of these prescriptions were new on admission. Benzodiazepines were prescribed for 27 (12%) patients, antidepressants were prescribed for 37 (16%) patients, and sedatives were prescribed for 14 (3%) patients. Patients who were prescribed antipsychotics, after adjusting for end of life medication, age and dementia severity, were significantly more likely to die (adjusted hazard ratio 5.78, 95% CI 1.57, 21.26, p= 0.008). Nonpharmacological management was used in 55% of participants, most commonly psychosocial interventions (36%) with little evidence of monitoring their effectiveness. A form of restraint was used during 50 (22%) patients’ admissions. Conclusions: Antipsychotic medications and psychosocial interventions were the main methods used to manage BPSD; however, these were not implemented or monitored in a systematic fashion.
    • Pain and delirium in people with dementia in the acute general hospital setting

      Feast, A.R.; White, N.; Lord, Kathryn; Kupeli, N.; Vickerstaff, V.; Sampson, E.L. (2018-11-01)
      Background: Pain and delirium are common in people with dementia admitted to hospitals. These are often under-diagnosed and under-treated. Pain is implicated as a cause of delirium but this association has not been investigated in this setting. Objective: To investigate the relationship between pain and delirium in people with dementia, on admission and throughout a hospital admission. Design: Exploratory secondary analysis of observational prospective longitudinal cohort data. Setting: Two acute hospitals in the UK. Methodology: Two-hundred and thirty participants aged ≥70 years were assessed for dementia severity, delirium ((Confusion Assessment Method (CAM), pain (Pain Assessment in Advanced Dementia (PAINAD)) scale and prescription of analgesics. Logistic and linear regressions explored the relationship between pain and delirium using cross-sectional data. Results: Pain at rest developed in 49%, and pain during activity for 26% of participants during their inpatient stay. Incident delirium developed in 15%, of participants, and 42% remained delirious for at least two assessments. Of the 35% of participants who were delirious and unable to self-report pain, 33% of these participants experienced pain at rest, and 56 experienced pain during activity. The odds of being delirious were 3.26 times higher in participants experiencing pain at rest (95% Confidence Interval 1.03–10.25, P = 0.044). Conclusion: An association between pain at rest and delirium was found, suggesting pain may be a risk factor for delirium. Since pain and delirium were found to persist and develop during an inpatient stay, regular pain and delirium assessments are required to manage pain and delirium effectively.
    • Pain, agitation, and behavioural problems in people with dementia admitted to general hospital wards

      Sampson, E.L.; White, N.; Lord, Kathryn; Leurent, B.; Vickerstaff, V.; Scott, S.; Jones, L. (2015-04)
      Pain is underdetected and undertreated in people with dementia. We aimed to investigate the prevalence of pain in people with dementia admitted to general hospitals and explore the association between pain and behavioural and psychiatric symptoms of dementia (BPSD). We conducted a longitudinal cohort study of 230 people, aged above 70, with dementia and unplanned medical admissions to 2 UK hospitals. Participants were assessed at baseline and every 4 days for self-reported pain (yes/no question and FACES scale) and observed pain (Pain Assessment in Advanced Dementia scale [PAINAD]) at movement and at rest, for agitation (Cohen–Mansfield Agitating Inventory [CMAI]) and BPSD (Behavioural Pathology in Alzheimer Disease Scale [BEHAVE-AD]). On admission, 27% of participants self-reported pain rising to 39% on at least 1 occasion during admission. Half of them were able to complete the FACES scale, this proportion decreasing with more severe dementia. Using the PAINAD, 19% had pain at rest and 57% had pain on movement on at least 1 occasion (in 16%, this was persistent throughout the admission). In controlled analyses, pain was not associated with CMAI scores but was strongly associated with total BEHAVE-AD scores, both when pain was assessed on movement (b 5 0.20, 95% confidence interval [CI] 5 0.07- 0.32, P 5 0.002) and at rest (b 5 0.41, 95% CI 5 0.14-0.69, P 5 0.003). The association was the strongest for aggression and anxiety. Pain was common in people with dementia admitted to the acute hospital and associated with BPSD. Improved pain management may reduce distressing behaviours and improve the quality of hospital care for people with dementia.
    • Pilot cluster randomised trial of an evidence-based intervention to reduce avoidable hospital admissions in nursing home residents (Better Health in Residents of Care Homes with Nursing - BHiRCH-NH Study)

      Sampson, E.L.; Feast, A.; Blighe, Alan; Froggatt, K.; Hunter, R.; Marston, L.; McCormack, B.; Nurock, S.; Panca, M.; Powell, Catherine; et al. (2020-12)
      Objectives To pilot a complex intervention to support healthcare and improve early detection and treatment for common health conditions experienced by nursing home (NH) residents. Design Pilot cluster randomised controlled trial. Setting 14 NHs (7 intervention, 7 control) in London and West Yorkshire. Participants NH residents, their family carers and staff. Intervention Complex intervention to support healthcare and improve early detection and treatment of urinary tract and respiratory infections, chronic heart failure and dehydration, comprising: (1) ‘Stop and Watch (S&W)’ early warning tool for changes in physical health, (2) condition-specific care pathway and (3) Situation, Background, Assessment and Recommendation tool to enhance communication with primary care. Implementation was supported by Practice Development Champions, a Practice Development Support Group and regular telephone coaching with external facilitators. Outcome measures Data on NH (quality ratings, size, ownership), residents, family carers and staff demographics during the month prior to intervention and subsequently, numbers of admissions, accident and emergency visits, and unscheduled general practitioner visits monthly for 6 months during intervention. We collected data on how the intervention was used, healthcare resource use and quality of life data for economic evaluation. We assessed recruitment and retention, and whether a full trial was warranted. Results We recruited 14 NHs, 148 staff, 95 family carers and 245 residents. We retained the majority of participants recruited (95%). 15% of residents had an unplanned hospital admission for one of the four study conditions. We were able to collect sufficient questionnaire data (all over 96% complete). No NH implemented intervention tools as planned. Only 16 S&W forms and 8 care pathways were completed. There was no evidence of harm. Conclusions Recruitment, retention and data collection processes were effective but the intervention not implemented. A full trial is not warranted.
    • Psychometric evaluation of the Cohen-Mansfield Agitation Inventory in an acute general hospital setting

      Kupeli, N.; Vickerstaff, V.; White, N.; Lord, Kathryn; Scott, S.; Jones, L.; Sampson, E.L. (2018-01)
      Objectives The Cohen-Mansfield Agitation Inventory (CMAI; (Cohen-Mansfield and Kerin, 1986)) is a well-known tool for assessing agitated behaviours in people with dementia who reside in long-term care. No studies have evaluated the psychometric qualities and factor structure of the CMAI in acute general hospitals, a setting where people with demand may become agitated. Method Longitudinal study investigating pain, agitation and behavioural problems in 230 people with dementia admitted to acute general hospitals in 2011–2012. Cohen-Mansfield Agitation Inventory was completed as part of a battery of assessments including PAINAD to measure pain. Results A nine-item two-factor model of aggressive and nonaggressive behaviours proved to be the best-fitting measurement model in this sample, (χ2 = 96.3, df = 26, p<0.001; BIC [Bayesian Information Criterion] = 4593.06, CFI [Comparative Fit Index] = 0.884, TLI [Tucker Lewis Index] = 0.839, RMSEA [Root Mean Square Error of the Approximation] = 0.108). Although similar to the original factor structure, the new model resulted in the elimination of item 13 (screaming). Validity was confirmed with the shortened CMAI showing similar associations with pain as the original version of the CMAI, in particular the link between aggressive behaviours and pain. Conclusion The factor structure of the CMAI was broadly consistent with the original solution although a large number of items were removed. Scales reflecting physical and verbal aggression were combined to form an Aggressive factor, and physical and verbal nonaggressive behaviours were combined to form the Nonaggressive factor. A shorter, more concise version of the CMAI was developed for use in acute general hospital settings. Copyright © 2017 John Wiley & Sons, Ltd.
    • Tools to Assess Pain or Lack of Comfort In Dementia: A Content Analysis

      van der Steen, J.T.; Sampson, E.L.; Van den Block, L.; Lord, Kathryn; Vankova, H.; Sophie, P.; Vandervoort, A.; Radbruch, L.; Shvartzman, P.; Sacchi, V.; et al. (2015-11)
      Context. There is need for tools to help detect pain or lack of comfort in persons unable to communicate. However, pain and (dis)comfort tools have not been compared, and it is unclear to what extent they discriminate between pain and other possible sources of discomfort, or even if items differ. Objectives. To map and compare items in tools that assess pain and the broader notion of discomfort or comfort in people with severe dementia or at the end of life. Methods. Using qualitative content analysis with six classifications, we categorized each item of four thoroughly tested observational pain tools (Pain Assessment in Advanced Dementia [PAINAD], Pain Assessment Checklist for Seniors with Limited Ability to Communicate [PACSLAC], Doloplus-2, and draft Pain Assessment in Impaired Cognition [PAIC]), and four discomfort tools (including distress, comfort, and quality of life in severe dementia or at the end of life; Discomfort ScaleeDementia Alzheimer Type [DS-DAT], Disability Distress Assessment Tool [DisDAT], End-of-Life in DementiaeComfort Assessment in Dying with Dementia [EOLD-CAD], and Quality of Life in Late-Stage Dementia [QUALID] scale). We calculated median proportions to compare distributions of categories of pain and discomfort tools. Results. We found that, despite variable content across tools, items from pain and discomfort tools overlapped considerably. For example, positive elements such as smiling and spiritual items were more often included in discomfort tools but were not unique to these. Pain tools comprised more ‘‘mostly descriptive’’ (median 0.63 vs. 0.44) and fewer ‘‘highly subjective’’ items (0.06 vs. 0.18); some used time inconsistently, mixing present and past observations. Conclusion. This analysis may inform a more rigorous theoretical underpinning and (re)development of pain and discomfort tools and calls for empirical testing of a broad item pool for sensitivity and specificity in detecting and discriminating pain from other sources of discomfort.
    • What are the barriers to care integration for those at the advanced stages of dementia living in care homes in the UK? Health care professional perspective

      Kupeli, N.; Leavey, G.; Harrington, J.; Lord, Kathryn; King, M.; Nazareth, I.; Moore, K.; Sampson, E.L.; Jones, L. (2016)
      People with advanced dementia are frequently bed-bound, doubly incontinent and able to speak only a few words. Many reside in care homes and may often have complex needs requiring efficient and timely response by knowledgeable and compassionate staff. The aim of this study is to improve our understanding of health care professionals’ attitudes and knowledge of the barriers to integrated care for people with advanced dementia. In-depth, interactive interviews conducted with 14 health care professionals including commissioners, care home managers, nurses and health care assistants in the UK. Barriers to care for people with advanced dementia are influenced by governmental and societal factors which contribute to challenging environments in care homes, poor morale amongst care staff and a fragmentation of health and social care at the end of life. Quality of care for people with dementia as they approach death may be improved by developing collaborative networks to foster improved relationships between health and social care services.
    • When Pain Memories Are Lost: A Pilot Study of Semantic Knowledge of Pain in Dementia

      Oosterman, J.M.; Hendriks, H.; Scott, S.; Lord, Kathryn; White, N.; Sampson, E.L. (2014)
      Objective It has been documented that pain in people with dementia is often under-reported and poorly detected. The reasons for this are not clearly defined. This project aimed to explore semantic concepts of pain in people with dementia and whether this is associated with clinical pain report. Design Cohort study with nested cross-sectional analysis. Setting Acute general hospital medical wards for older people. Subjects People with dementia (N = 26) and control participants (N = 13). Methods Two subtests of semantic memory for pain: 1) Identifying painful situations from a standardized range of pictures; 2) Describing the concept of pain. Participants also indicated whether they were in pain or not, were observed for pain (PAINAD scale) and completed the Wong–Baker FACES scale to indicate pain severity. Results Compared with the control group, people with dementia were less able to identify painful situations and used fewer categories to define their concept of pain. In turn, the performance on these two measures was related to the reported presence and, albeit less strongly, to the reported severity of pain, indicating that a reduction in semantic memory for pain is associated with a decline in reported pain. Conclusions This study is the first to show that semantic memory for pain is diminished in dementia patients. When using clinical pain tools, clinicians should consider these effects which may bias clinical pain ratings when they evaluate and manage pain in these patients. This might improve the recognition and management of pain in people with dementia.