Sharon Scott

Pain, agitation, and behavioural problems in people with dementia admitted to general hospital wards: a longitudinal cohort study

Abstract 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 (&bgr; = 0.20, 95% confidence interval [CI] = 0.07-0.32, P = 0.002) and at rest (&bgr; = 0.41, 95% CI = 0.14-0.69, P = 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.

Behavioural and psychiatric symptoms in people with dementia admitted to the acute hospital: prospective cohort study.

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.

Development of a model for integrated care at the end of life in advanced dementia: A whole systems UK-wide approach

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.

When pain memories are lost: A pilot study of semantic knowledge of pain in dementia

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.

Study protocol: the behaviour and pain in dementia study (BePAID).

BackgroundPeople with dementia admitted to the acute hospital often receive poor quality care particularly with regards to management of behavioural and psychiatric symptoms of dementia (BPSD) and of pain. There have been no UK studies on the prevalence and type of pain or BPSD in people with dementia in this setting, or on how these may impact on patients, carers, staff and costs of care.Methods/DesignWe shall recruit older people with dementia who have unplanned acute medical admissions and measure the prevalence of BPSD using the Behave-AD (Behaviour in Alzheimers Disease) and the CMAI (Cohen Mansfield Agitation Inventory). Pain prevalence and severity will be assessed by the PAINAD (Pain Assessment in Advanced Dementia) and the FACES pain scale. We will then analyse how these impact on a variety of outcomes and test the hypothesis that poor management of pain is associated with worsening of BPSD.DiscussionBy demonstrating the costs of BPSD to individuals with dementia and the health service this study will provide important evidence to drive improvements in care. We can then develop effective training for acute hospital staff and alternative treatment strategies for BPSD in this setting.

The management of behavioural and psychological symptoms of dementia in the acute general medical hospital: a longitudinal cohort study.

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.

The first 50 patients: A brief report on the initial findings from the Palliative Care in Dementia Project

The St. Christophers Hospice Palliative Care in Dementia Project, funded for 3 years by the Kings Fund, aims to investigate the palliative care needs of patients with advanced dementia and their families; to clarify the role of specialist palliative care for this patient group; and to examine the usefulness of one model of working. This interim report outlines findings from the first 50 patients taken on by the project. Early results indicate that both patients and their carers have a high level of unmet need. The model of care chosen for this project appears to meet many of these needs, and appears to be both cost efficient and effective in terms of improving end of life care for dementia patients and their carers.

CoMPASs: IOn programme (Care Of Memory Problems in Advanced Stages of dementia: Improving Our Knowledge): protocol for a mixed methods study.

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.

Development and implementation of the Steps to Successful Palliative Care programme in residential care homes for people with a learning disability

BACKGROUND: For health and social care services to meet the needs of a growing and ageing population they need to respond appropriately. This response is only going to be possible if attention is paid to the individuals within it. This includes those people living with a learning disability (LD). AIMS: To develop and implement a palliative care programme that would meet the needs of people with a LD, their families and care home staff. METHODS: A palliative care programme and resource folder was created following a literature review and meetings with LD and specialist palliative care experts, organisations and care home managers. This folder was further developed collaboratively throughout the programmes implementation. FINDINGS: 39 homes were recruited and 86% completed the programme. CONCLUSIONS: This programme enabled the identification, assessment and management of the health and social care needs of people living and dying in a care home with a LD.

Psychometric evaluation of the Cohen-Mansfield Agitation Inventory in an acute general hospital setting

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.