Caroline Swarbrick

Occurrence and risk factors for falls in rheumatoid arthritis

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.

An exploratory randomized controlled study of a healthy living intervention in early intervention services for psychosis: the INTERvention to encourage ACTivity, improve diet, and reduce weight gain (INTERACT) study.

BACKGROUND People with psychosis often experience weight gain, which places them at risk of cardiovascular disease, diabetes, and early death. OBJECTIVE To determine the uptake, adherence, and clinical effectiveness of a healthy living intervention designed to reduce weight gain. METHOD An exploratory randomized controlled trial, comparing the intervention with treatment as usual (TAU) in 2 early intervention services for psychosis in England. DSM-IV classification was the diagnostic criteria used to assign the psychiatric diagnoses. The primary outcome was change in body mass index (BMI) from baseline to 12-month follow-up. The study was conducted between February 2009 and October 2012. RESULTS 105 service users, with a BMI of ≥ 25 (≥ 24 in South Asians), were randomized to intervention (n = 54) or TAU (n = 51) after stratification by recent commencement of antipsychotic medication. Ninety-three service users (89%) were followed up at 12 months. Between-group difference in change in BMI was not significant (effect size = 0.11). The effect of the intervention was larger (effect size = 0.54, not significant) in 15 intervention (28%) and 10 TAU (20%) participants who were taking olanzapine or clozapine at randomization. CONCLUSIONS The healthy living intervention did not show a significant difference in BMI reduction compared to the TAU group. TRIAL REGISTRATION www.isrctn.org identifier: ISRCTN22581937.

The senses in practice: Enhancing the quality of care for residents with dementia in care homes

AIM The study aimed to develop, deliver, and evaluate a training programme in care homes to enhance the quality of care for people living with dementia based on the principles of relationship-centred care expressed through the Senses Framework. BACKGROUND There are increasing numbers of people living with dementia worldwide with a growing proportion requiring residential long-term care. This makes the quest for enhancing the quality of care and quality of life for people with dementia ever more pressing. DESIGN A mixed-methods design was used adopting a Practice Development approach. The findings from one care home in the North West of England are reported. METHODS Eight facilitated workshops based on the principles of relationship-centred care were completed and evaluated in 2010, using pre- and postintervention design. A focus group was undertaken with staff on completion of the study to gain a more comprehensive understanding of the practice/training context, augmented by case examples of changes in practice identified from the study workshops. RESULTS Structured questionnaires were used to profile the care home before and after the training. Following the workshops, staff felt more able to collect and use biographical information. In particular, staff reported how this information supported them to initiate meaningful conversations with the person with dementia as part of everyday care routines, thus improving overall feelings of well-being. CONCLUSION Using a biographical approach to care planning structured through the Senses Framework helped staff to develop a greater understanding of the person with dementia.

Using sense-making theory to aid understanding of the recognition, assessment and management of pain in patients with dementia in acute hospital settings

BACKGROUND The recognition, assessment and management of pain in hospital settings is suboptimal, and is a particular challenge in patients with dementia. The existing process guiding pain assessment and management in clinical settings is based on the assumption that nurses follow a sequential linear approach to decision making. In this paper we re-evaluate this theoretical assumption drawing on findings from a study of pain recognition, assessment and management in patients with dementia. AIM To provide a revised conceptual model of pain recognition, assessment and management based on sense-making theories of decision making. METHODS The research we refer to is an exploratory ethnographic study using nested case sites. Patients with dementia (n=31) were the unit of data collection, nested in 11 wards (vascular, continuing care, stroke rehabilitation, orthopaedic, acute medicine, care of the elderly, elective and emergency surgery), located in four NHS hospital organizations in the UK. Data consisted of observations of patients at bedside (170h in total); observations of the context of care; audits of patient hospital records; documentary analysis of artefacts; semi-structured interviews (n=56) and informal open conversations with staff and carers (family members). FINDINGS Existing conceptualizations of pain recognition, assessment and management do not fully explain how the decision process occurs in clinical practice. Our research indicates that pain recognition, assessment and management is not an individual cognitive activity; rather it is carried out by groups of individuals over time and within a specific organizational culture or climate, which influences both health care professional and patient behaviour. CONCLUSIONS We propose a revised theoretical model of decision making related to pain assessment and management for patients with dementia based on theories of sense-making, which is reflective of the reality of clinical decision making in acute hospital wards. The revised model recognizes the salience of individual cognition as well as acknowledging that decisions are constructed through social interaction and organizational context. The model will be used in further research to develop decision support interventions to assist with the assessment and management of patients with dementia in acute hospital settings.

The assessment and management of pain in patients with dementia in hospital settings: a multi-case exploratory study from a decision making perspective

BackgroundPain 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.MethodsA 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.ResultsStaff 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.ConclusionsThere 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.

Tea, talk and technology: patient and public involvement to improve connected health ‘wearables’ research in dementia

Plain English summaryThere are a growing number of mobile phones, watches and electronic devices which can be worn on the body to track aspects of health and well-being, such as daily steps, sleep and exercise. Dementia researchers think that these devices could potentially be used as part of future research projects, for example to help spot changes in daily activity that may signal the early symptoms of dementia. We asked a range of older people, including people living with dementia and their carers, to participate in interactive discussions about how future participants might find using these devices as part of research projects. We also invited volunteers to borrow a range of devices to test at home, giving them further insights. Discussions revealed that people were generally supportive of this type of research, provided they gave informed consent and that devices were discreet, comfortable and easy to use. They also valued technical support and regular feedback on study progress to encourage ongoing participation. These findings were used to develop a pool of devices for researchers, with computer software and written guidance to help plan, design and support studies. Our work shows that when given the right opportunities, people who are affected by dementia can provide valuable insights that can enhance the design, delivery and quality of future research.AbstractBackground Increasingly, researchers are recognising the potential for connected health devices, including smartphones and smartwatches, to generate high resolution data about patterns of daily activity and health outcomes. One aim of the Dementias Platform UK (DPUK) project is to provide researchers with a secure means to collect, collate and link data generated by such devices, thereby accelerating this type of research in the field of dementia. We aimed to involve members of the public in discussions about the acceptability and feasibility of different devices and research designs to inform the development of a device pool, software platform and written guidance to support future studies. Methods Over 30 people attended a series of interactive workshops, drop-in sessions and meetings in Greater Manchester. This included people living with dementia and cognitive impairments, carers and people without memory problems. Discussions were tailored to suit different audiences and focused on the feasibility and acceptability of a range of different wearable devices and research designs. We also invited volunteers to borrow a device to test at home, enabling further insights from hands-on interactions with devices. Results Discussions revealed that people were supportive of connected health dementia research in principle, provided they gave informed consent and that devices were discreet, comfortable and easy to use. Moreover, they recommended technical support and regular feedback on study progress to encourage ongoing participation. Conclusion By using a range of discussion-based and practical activities, we found it was feasible to involve people affected by dementia and use their insights to shape the development of a software platform and device pool to support future connected health dementia research. We recommend that researchers planning such studies in future pay adequate attention to designing suitable participant information, technical support and mechanisms of providing study progress updates to support sustained engagement from participants.

Visioning change: Co-producing a model of involvement and engagement in research (Innovative Practice):

The involvement of people living with dementia in research has traditionally been located in the realms of ‘subject’ or ‘participant’. However, there has been an increase in demand for greater transparency by academic bidding teams (particularly within the UK) in demonstrating how people with a lived experience have been and will be involved in the research process. Located within the Economic and Social Research Council/National Institute for Health Research (ESRC/NIHR)-funded Neighbourhoods and Dementia Study (2014–2019), led by The University of Manchester (UK), this paper outlines the development of the CO-researcher INvolvement and Engagement in Dementia (COINED) Model, which was co-produced alongside three independent groups of people living with dementia: Open Doors, the Scottish Dementia Working Group and EDUCATE.

The quest for a new methodology for dementia care research

Several years ago, I interviewed Ann, who is a good friend of mine and has young onset Alzheimer’s disease. We explored the representation of dementia as a medical syndrome and the representation of people with the lived experience. She shared the words that are at the start of the Editorial. Ann tells things as they are and has taught me so much over the years. Her words also make me reflect on the meaning of the authentic knowledge and understandings of dementia. Working as a researcher in dementia care for over 12 years, I have gained insight into the methodological approaches and have experienced their limitations in practice. Dementia care research demands a more collaborative approach than that offered by the traditional quantitative vs. qualitative debates and paradigms. It necessitates an approach which not only explores processes and journeys, but in ways that are not dependent on verbal abilities, recall or the written word. The search for a more collaborative and creative way of working has driven the theoretical underpinnings of own research agenda and its methodological applications. As Heron (1996) quite insightfully stated: ‘‘. . . to generate knowledge about persons without their full participation in deciding how to generate it, is to misrepresent their personhood and to abuse by neglect their capacity for autonomous intentionality. It is fundamentally unethical.’’ (pp. 21–22) Within the UK, inroads have been made in terms of supporting and facilitating involvement in research outside of the realms of ‘participant’. INVOLVE (see www. invo.org.uk) and the Dementia Empowerment and Engagement Project (see www. dementiavoices.org.uk) are examples of facilitative and supportive mechanisms to involve people in research through nationally accepted guidance. From a professional day-to-day perspective, the nucleus of my own work is in patient and public involvement in dementia care research. Amongst other roles, I currently lead a Work Programme on the UK Economic and Social Research Council (ESRC)/National Institute for Health Research

Developing a core outcome set for people living with dementia at home in their neighbourhoods and communities: study protocol for use in the evaluation of non-pharmacological community-based health and social care interventions

BackgroundThe key aim of the study is to establish an agreed standardised core outcome set (COS) for use when evaluating non-pharmacological health and social care interventions for people living at home with dementia.Methods/designDrawing on the guidance and approaches of the Core Outcome Measures in Effectiveness Trials (COMET), this study uses a four-phase mixed-methods design:1Focus groups and interviews with key stakeholder groups (people living with dementia, care partners, relevant health and social care professionals, researchers and policymakers) and a review of the literature will be undertaken to build a long list of outcomes.2Two rounds of Delphi surveys will be used with key stakeholder groups. Statements for the Delphi surveys and participation processes will be developed and informed through substantial member involvement with people living with dementia and care partners. A consensus meeting will be convened with key participant groups to discuss the key findings and finalise the COS.3A systematic literature review will be undertaken to assess the properties of tools and instruments to assess components of the COS. Measurement properties, validity and reliability will be assessed using the Consensus-based Standards for the Selection of Health Measurement (COSMIN) and COMET guidance.4A stated preference survey will elicit the preferences of key stakeholders for the outcomes identified as important to measure in the COS.DiscussionTo the best of our knowledge, this study is the first to use a modified Delphi process to involve people living with dementia as a participant group. Though the study is confined to collecting data in the United Kingdom, use of the COS by researchers will enhance the comparability of studies evaluating non-pharmacological and community-based interventions.Trial registrationThe study is registered on the COMET initiative, registered in 2014 at comet-initiative.org.

Cancer-related information needs and treatment decision-making experiences of people with dementia in England: a multiple perspective qualitative study

Objectives Little is known about the cancer experience and support needs of people with dementia. In particular, no evidence currently exists to demonstrate the likely complex decision-making processes for this patient group and the oncology healthcare professionals (HCP) involved in their care. The aim of this study was to explore the cancer-related information needs and decision-making experiences of patients with cancer and comorbid dementia, their informal caregivers and oncology HCPs. Design Cross-sectional qualitative study. Semistructured interviews were conducted face to face with participants. Interviews were audio recorded and transcribed prior to thematic analysis. Setting Patients with a diagnosis of cancer and dementia, their informal caregivers and oncology HCPs involved in their care, all recruited from a regional treatment cancer centre. Participants Purposeful sample of 10 patients with a diagnosis of cancer–dementia, informal caregivers (n=9) and oncology HCPs (n=12). Results Four themes were identified: (1) leading to the initial consultation—HCPs require more detailed information on the functional impact of dementia and how it may influence cancer treatment options prior to meeting the patient; (2) communicating clinically relevant information—informal caregivers are relied on to provide patient information, advocate for the patient and support decision-making; (3) adjustments to cancer care—patients with dementia get through treatment with the help of their family and (4) following completion of cancer treatment—there are continuing information needs. Oncology HCPs discussed their need to consult specialists in dementia care to support treatment decision-making. Conclusions Although patients with cancer–dementia are involved in their treatment decision-making, informal caregivers are generally crucial in supporting this process. Individual patient needs and circumstances related to their cancer must be considered in the context of dementia prognosis highlighting complexities of decision-making in this population. Oncology teams should strive to involve healthcare staff with dementia expertise as early as possible in the cancer pathway.