BACKGROUND:People with learning disability (LD) have complex comorbidities that develop at an earlier age than the general population and with which they are now living longer. Identification, assessment and management of these conditions is important but challenging.AIM:To develop resources with care staff to enable them to recognise and manage changes and decline in the health of a person with a LD.METHODS:Two resources (PIP-LD and CIRC) were developed through undertaking a literature review; networking with experts; and collaborating with staff in the care homes for people with a LD. Care staff then used these resourcesto review their residents.FINDINGS:The PIP-LD and CIRC were used in 39 care homes. The PIP-LD empowered staff to meet people's immediate health needs, and the CIRC helped them to recognise changes or a decline.CONCLUSIONS:The combined use of the PIP-LD and the CIRC enabled care staff to recognise the signs and symptoms of each person's comorbidities early, and to identify and manage changes when their health declined.

This study is part of The Impact of acute Hospitalisation on People with Dementia: The Behaviour and Pain (BepAid) Study. This project is funded jointly by the Alzheimer’s Society and the BUPA Foundation (Grant reference number: 131)

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 programme's 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.

ObjectivesThe 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. MethodLongitudinal 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. ResultsA nine-item two-factor model of aggressive and nonaggressive behaviours proved to be the best-fitting measurement model in this sample, ((2)=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. ConclusionThe 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 (c) 2017 John Wiley & Sons, Ltd.

BackgroundThe 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.ResultsThe 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). Non‐pharmacological 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.ConclusionsAntipsychotic medications and psychosocial interventions were the main methods used to manage BPSD; however, these were not implemented or monitored in a systematic fashion.

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.

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 (β = 0.20, 95% confidence interval [CI] = 0.07-0.32, P = 0.002) and at rest (β = 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.

Introduction Carers of people with advanced dementia (AdvD) have high burden and poor mental and physical health. The CoMPASs:IOn programme has developed and is piloting a complex intervention to improve end-of-life care for people with AdvD including support for families. Aim(s) and method(s) Pilot longitudinal cohort study of carers (target N=40) of people with AdvD (Functional Assessment Staging Scale 7a and above), assessed at study entry then monthly for 9 months or until patient death using the HADS, SF-12 and Satisfaction with Care at the End of Life in Dementia Scale (SWCEOLD). Results 25 carers currently recruited (mean age 62, range 43–91; 68% female; 76% child of the person with dementia, 48% in paid employment). 92% of those they care for reside in care homes. Initial SWC-EOLD scores were 29.7 (range 13–40), consistent even in 7 carers whose relative died (mean score 30.3 (range 13–40) a month before death, 32.1 (range 13–40) after bereavement). On HADS (cut off ≥8), at initial assessment 40% had anxiety, 28% depression. Anxiety decreased over time; 20% have recorded anxiety 9 months later (7 carers). Two months post-bereavement, 14% of carers had anxiety or depression. At first assessment, SF-12 physical scores were 50 (range 33–58) remaining constant, mental health 48 (range 19–64) declining to 44 post death. Conclusion(s) It is feasible to recruit carers of people with AdvD and retain them into bereavement. Carers were satisfied with on-going care and around the time of death for the person with AdvD. Accrual continues for a further 4 months.

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.

Advanced dementia is associated with a high symptom burden. However, people with advanced dementia and their carers are less likely to be cared for by specialist palliative care services than people with other conditions such as cancer. The traditional model of specialist palliative care, with its high level of symptom support input in the last weeks/months of life, is not appropriate for people with dementia as the condition is associated with a longer, dwindling trajectory towards death, associated with progressive decline in physical and cognitive functioning. There is also a fear in some quarters that if people with dementia have access to specialist palliative care, services such as hospices will become inundated with referrals. Thus, there is an urgent need to develop models of palliative care services for people with advanced dementia and their carers. This article provides an overview of a 3-year project that was conducted by St Christopher’s Hospice, London, with the aim of studying the problems faced by these patients and their families/carers and developing a feasible model of specialist palliative care for advanced dementia. Conflicts of interest: none

International Journal of Palliative NursingVol. 18, No. 5 CommentaryThe Compassion programme: looking at improving end-of-life care for people with advanced dementiaSharon Scott, Elizabeth L Sampson, Louise JonesSharon ScottSearch for more papers by this author, Elizabeth L SampsonSearch for more papers by this author, Louise JonesSearch for more papers by this authorSharon Scott; Elizabeth L Sampson; Louise JonesPublished Online:28 Sep 2013https://doi.org/10.12968/ijpn.2012.18.5.212AboutSectionsView articleView Full TextPDF/EPUB ToolsAdd to favoritesDownload CitationsTrack CitationsPermissions ShareShare onFacebookTwitterLinked InEmail View article References Aminoff BZ, Adunsky A (2005) Dying dementia patients: too much suffering, too little palliation. Am J Hosp Palliat Care 22(5): 344–8 Crossref, Medline, Google ScholarBanerjee S, Owen J (2009) Living Well with Dementia: A National Dementia Strategy. Department of Health, London Google ScholarBlack BS, Finucane T, Baker Aet al. 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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.

Dementia is common and becoming commoner. In developed countries the number of people with dementia is doubling every 20 years as a result of an aging population. In developing countries the situation is even worse as their life expectancy is catching up rapidly with richer nations. This has important economic and social consequences for the state, but also huge personal implications for people with dementia and their carers....

Subject Clinical Medicine Neurology Communication Skills Pain Medicine Pharmacology Palliative Medicine Series Oxford Specialist Handbooks in End of Life Care