Objectives: To determine the one year period prevalence of falls by age and sex in patients with rheumatoid arthritis and the influence of concurrent medical treatment and disability on the occurrence of falls in this group. Methods: A consecutive series of rheumatoid patients aged 35 years and over, attending hospital outpatient clinics at Hope hospital, Salford, were asked to complete an interview assisted questionnaire which asked about the occurrence and number of falls in the previous 12 months. Subjects who took part were asked about current treatment with antihypertensive agents, diuretics, sedatives or hypnotics, antidepressants, and a history of previous hip/knee surgery. They also completed the health assessment questionnaire (HAQ). Logistic regression was used to determine the association between these variables and falls in the previous 12 months. Results: 253 men and women, mean age 62 years, were studied, and 84 (33%) reported falling in the previous year (36% of women and 26% of men). Of these, 52% had fallen on more than one occasion. There was no important increase in the frequency of falls with age. After adjusting for age and sex, those who had fallen in the previous year were more likely to report taking antidepressant treatment (odds ratio (OR) = 2.09) and to have impairment in both walking (OR = 1.37) and rising (OR = 1.41). The HAQ score was higher in those who reported a fall than those who did not, though the difference was not statistically significant. Conclusions: In this hospital based survey, one in three patients with rheumatoid arthritis reported falling in the previous 12 months. Falls were associated with self reported impairment in lower limb function.

Objectives: inconsistency in outcome measurement in dementia care trials impedes the comparisons of effectiveness between trials. The key aim of this study is to establish an agreed standardised core outcome set (COS) for use when evaluating non-pharmacological health and social care interventions for people with dementia living at home. Method: we used a mixed-methods research design, including substantive qualitative research with five key stakeholders groups. We consulted with people living with dementia for many aspects of this research. We applied a modified two-round 54 item Delphi approach to attain consensus on core outcomes. The COS was finalised in a face-to-face consensus meeting in 2018. Results: of the 288 who completed round 1 (21 people living with dementia, 58 care partners, 137 relevant health and social care professionals, 60 researchers, 12 policy makers), 246 completed round 2 (85% response rate). Twenty participants attended the consensus meeting. We reached consensus for the inclusion of 13 outcome items. Conclusion: we identified 13 outcome items which are considered core; many relate to social health. Providing there are adequate measures, measuring these core outcome items will enhance comparisons for effectiveness making trial evidence more useful. The items will provide commissioners and service planners with information on what types of interventions are most likely to be valued highly by people living with dementia. Trial registration: The study is registered on the COMET initiative database.

Summary: The National Dementia Strategy in England has performed an essential role in transforming health and social care services and improving the commissioning architecture. However, to date, little attention has been paid to understanding the ways in which the outdoor and built environment impacts and intersects with the lives of people with dementia and their carers. One way of better understanding the outdoor and built environment is through a focus on the ‘neighbourhood’ as this is an area of public policy where attempts are being made across disciplines to unpack its meanings, significance and identity. This paper adopts a realist review method to detail the key findings and messages from the body of work that links the experience of living with dementia to the neighbourhood. Our findings from this review are assimilated and defined/presented under three headings, namely: outdoor spaces, built environment, and everyday technologies. These headings and our definitions are not discrete properties and there is some overlap in content. We found no research that sets out to enquire about how people with dementia might define their neighbourhood or that explores everyday neighbourhood practices for those living with the condition. Emerging concepts such as citizenship and, in the UK, the Coalition Government advancement of the ‘Big Society’, promote a vision of civic responsibilities and networked, dementia-capable communities, but evaluation of such initiatives are virtually absent from the literature. The review did uncover some interesting and innovative research methods that extend neighbourhood working, such as the ‘walking interview’. In order to develop a neighbourhood model for dementia, future research should examine the relationship and interaction between the neighbourhood as a social space and as a physical space alongside the active role of people with dementia as ‘place-makers’.

Pain is often poorly managed in people who have a dementia. Little is known about how this patient population is managed in hospital, with research to date focused mainly on care homes. This study aimed to investigate how pain is recognised, assessed and managed in patients with dementia in a range of acute hospital wards, to inform the development of a decision support tool to improve pain management for this group. A qualitative, multi-site exploratory case study. Data were collected in four hospitals in England and Scotland. Methods included non-participant observations, audits of patient records, semi-structured interviews with staff and carers, and analysis of hospital ward documents. Thematic analysis was performed through the lens of decision making theory. Staff generally relied on patients’ self-report of pain. For patients with dementia, however, communication difficulties experienced because of their condition, the organisational context, and time frames of staff interactions, hindered patients’ ability to provide staff with information about their pain experience. This potentially undermined the trials of medications used to provide pain relief to each patient and assessments of their responses to these treatments. Furthermore, given the multidisciplinary environment, a patient’s communication about their pain involved several members of staff, each having to make sense of the patient’s pain as in an ‘overall picture’. Information about patients’ pain, elicited in different ways, at different times and by different health care staff, was fragmented in paper-based documentation. Re-assembling the pieces to form a ‘patient specific picture of the pain’ required collective staff memory, ‘mental computation’ and time. There is a need for an efficient method of eliciting and centralizing all pain-related information for patients with dementia, which is distributed in time and between personnel. Such a method should give an overall picture of a patient’s pain which is rapidly accessible to all involved in their care. This would provide a much-needed basis for making decisions to support the effective management of the pain of older people with dementia in hospital.

Recent recommendations promote the inclusion of people living with dementia beyond the role of ‘participant’ to involvement in all areas of the research process. This reflects shifts in dementia studies from ‘research on’ to ‘research with’ people living with the condition. In this paper, we describe the design process and features of a modified Delphi survey devised through consultation with people living with dementia. This article focusses on consultation with people living with dementia and care partners to design an accessible Delphi survey to facilitate participation in core outcome set development. We used the COINED model of co-research developed through the ESRC/NIHR Neighbourhoods and Dementia Study to structure consultation on three features of modified Delphi design. Consultation was achieved through 1:1 and group sessions with a total of 28 individuals (18 people living with dementia and seven care partners). A flexible, responsive and adaptive approach to ongoing consultation with people living with dementia and care partners through 1:1 face-to-face sessions facilitated: (1) the development of a 3-point non-categorical importance scale; (2) the translation of 54 outcome areas into ‘accessible statements’ for a two-round Delphi survey administered to five stakeholder groups (people living with dementia, care partners, health and social care professionals, policy-makers and researchers); and (3) the delivery of a Delphi survey. These features of core outcome set development facilitated the involvement of people living with dementia in study design and as research participants in the data collection phase. Involvement of people living with dementia as a key stakeholder group is not reflected in studies using Delphi survey methods for core outcome set development. Time, resources, researcher expertise and support, underpinned through targeted funding facilitate meaningful and productive inclusive approaches, now an expectation of dementia research. The study is registered on the COMET Initiative .