What is important to people living with dementia?: the 'long-list' of outcome items in the development of a core outcome set for use in the evaluation of non-pharmacological community-based health and social care interventions.

BACKGROUND: Core outcome sets (COS) prioritise outcomes based on their importance to key stakeholders, reduce reporting bias and increase comparability across studies. The first phase of a COS study is to form a 'long-list' of outcomes. Key stakeholders then decide on their importance. COS reporting is described as suboptimal and this first phase is often under-reported. Our objective was to develop a 'long-list' of outcome items for non-pharmacological interventions for people with dementia living at home. METHODS: Three iterative phases were conducted. First, people living with dementia, care partners, health and social care professionals, policymakers and researchers (n = 55) took part in interviews or focus groups and were asked which outcomes were important. Second, existing dementia trials were identified from the ALOIS database. 248 of 1009 pharmacological studies met the inclusion criteria. Primary and secondary outcomes were extracted from a 50% random sample (n = 124) along with eight key reviews/qualitative papers and 38 policy documents. Third, extracted outcome items were translated onto an existing qualitative framework and mapped into domains. The research team removed areas of duplication and refined the 'long-list' in eight workshops. RESULTS: One hundred seventy outcome items were extracted from the qualitative data and literature. The 170 outcome items were consolidated to 54 in four domains (Self-Managing Dementia Symptoms, Quality of Life, Friendly Neighbourhood & Home, Independence). CONCLUSIONS: This paper presents a transparent blueprint for 'long-list' development. Though a useful resource in their own right, the 54 outcome items will be distilled further in a modified Delphi survey and consensus meeting to identify core outcomes.

What factors affect clinical decision-making about access to stroke rehabilitation? A systematic review.

OBJECTIVES:: To determine the factors affecting clinical decision-making about which patients should receive stroke rehabilitation. METHODS:: Data sources (MEDLINE, CINAHL, AMED and PsycINFO) were searched systematically from database inception to August 2018. Full-text English-language studies of data from stroke clinicians were included. Studies of patients were excluded. The included studies were any design focussed on clinical decision-making for referral or admission into stroke rehabilitation. Summary factors were compiled from each included study. The quality of the included studies was assessed using the Mixed Methods Appraisal Tool. RESULTS:: After removing duplicates, 1915 papers were identified, of which 13 met the inclusion criteria. Eight included studies were qualitative and one used mixed methods. A total of 292 clinicians were included in the studies. Quality of the included studies was mixed. Patient-level and organizational factors as well as characteristics of individual clinicians contributed to decisions about rehabilitation. The most often described factors were patients' pre- and poststroke function ( n = 6 studies), presence of dementia ( n = 6), patients' social/family support ( n = 6), organizational service pressures ( n = 7) and the decision-making clinician's own knowledge ( n = 5) and emotions ( n = 5). CONCLUSION:: The results highlight a lack of clinical guidance to aid decision-making and reveal that a subjective approach to rehabilitation decision-making influenced by patient-level and organizational factors alongside clinicians' characteristics occurs across services and countries.

Does pre-existing cognitive impairment impact on amount of stroke rehabilitation received? An observational cohort study.

OBJECTIVE: To examine whether stroke survivors in inpatient rehabilitation with pre-existing cognitive impairment receive less therapy than those without. DESIGN: Prospective observational cohort. SETTING: Four UK inpatient stroke rehabilitation units. PARTICIPANTS: A total of 139 stroke patients receiving rehabilitation, able to give informed consent/had an individual available to act as personal consultee. In total, 33 participants were categorized with pre-existing cognitive impairment based on routine documentation by clinicians and 106 without. MEASURES: Number of inpatient therapy sessions received during the first eight weeks post-stroke, referral to early supported discharge, and length of stay. RESULTS: On average, participants with pre-existing cognitive impairment received 40 total physiotherapy and occupational therapy sessions compared to 56 for those without (mean difference = 16.0, 95% confidence interval (CI) = 2.9, 29.2), which was not fully explained by adjusting for potential confounders (age, sex, National Institutes of Health Stroke Scale (NIHSS), and pre-stroke modified Rankin Scale (mRS)). While those with pre-existing cognitive impairment received nine fewer single-discipline physiotherapy sessions (95% CI = 3.7, 14.8), they received similar amounts of single-discipline occupational therapy, psychology, and speech and language therapy; two more non-patient-facing occupational therapy sessions (95% CI = -4.3, -0.6); and nine fewer patient-facing occupational therapy sessions (95% CI = 3.5, 14.9). There was no evidence to suggest they were discharged earlier, but of the 85 participants discharged within eight weeks, 8 (42%) with pre-existing cognitive impairment were referred to early supported discharge compared to 47 (75%) without. CONCLUSION: People in stroke rehabilitation with pre-existing cognitive impairments receive less therapy than those without, but it remains unknown whether this affects outcomes.

What influences decisions about ongoing stroke rehabilitation for patients with pre-existing dementia or cognitive impairment: a qualitative study?

OBJECTIVE: To identify factors influencing clinicians decision-making about ongoing stroke rehabilitation for people with pre-existing dementia/cognitive impairment and the impact on clinical practice. DESIGN: Qualitative semi-structured interviews with stroke specialist healthcare professionals analysed using thematic analysis. SETTING: Acute stroke unit, inpatient stroke rehabilitation units, and community stroke services. PARTICIPANTS: Twenty three professionals from six multidisciplinary stroke teams involved in decision-making about stroke patients' rehabilitation potential and clinical pathways. RESULTS: Factors influencing decision-making about ongoing rehabilitation were (1) gaining understanding of the individual patient, (2) clinician's knowledge of dementia/cognitive impairment, (3) predicting rehabilitation potential, (4) organizational constraints, and (5) clinician's perceptions of their role within the team. Decision-making led to two outcomes, either accommodating the pre-existing dementia/cognitive impairment within delivery of rehabilitation or ending rehabilitation for that patient to allocate limited resources where they were perceived more likely to be effective. Participants felt that patients with pre-existing dementia/cognitive impairment had difficulty demonstrating the required rehabilitation potential within the short timescales available in the current model of service delivery. Participants identified a need for training to improve their knowledge and confidence for decision-making and delivery of rehabilitation for this growing population. CONCLUSION: Clinicians' decision-making about ongoing rehabilitation for patients with prestroke dementia/cognitive impairments is influenced by gaps in their knowledge and by service constraints. Increased training and more flexible, patient-centred services would enable clinicians to better accommodate these patients in rehabilitation.

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

BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

Do people with dementia and carers get what they need? Barriers in social care and carers needs assessments.

BACKGROUND: People with dementia and unpaid carers need to go through a social care or carers needs assessment to access and receive subsidised or fully-funded social care. With no previous evidence, this qualitative study aimed to provide insights into the access to, experiences of receiving and conducting social care or carers needs assessments, and access to social care. METHODS: Unpaid carers of people with dementia and professionals conducting social care or carers needs assessment living or working in England were interviewed remotely about their experiences between April and August 2023. Topic guides were co-produced with two unpaid carers, and both were supported to code anonymised transcripts. Thematic analysis was used to analyse the data. FINDINGS: Twenty-seven unpaid carers (n = 21) and professionals (n = 6) participated. Four themes were generated: (1) Issues with accessing needs assessments, not the process; (2) Knowledge of needs assessments and the health and social care system; (3) Expectations of unpaid carers; and (4) Post-assessment unmet needs. The most prominent barriers unpaid carers and their relatives with dementia encountered were awareness of and access to needs assessment. Unpaid carers were mostly unaware of the existence and entitlement to a needs assessment, and sometimes realised they had participated in one without their knowledge. Professionals described the pressures on their time and the lack of financial resources within services. CONCLUSIONS: To facilitate improved access to dementia care and support for carers, the pathway to accessing needs assessments needs to be clearer, with better integration and communication between health and social care.

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.

Introducing the bio-psycho-social-physical model of dementia through a collective case study design.

AIMS AND OBJECTIVES: To provide evidence for the development of a physical domain attached to the well-known bio-psycho-social model of dementia. The objectives were to develop a set of international case studies that followed a trajectory approach, from prevention to end-of-life care. BACKGROUND: In the UK the bio-psycho-social model has informed the shape of the National Institute for Health and Clinical Excellence and the Social Care Institute for Excellence 'dementia' guideline. However, limited attention has been paid to outlining and describing a physical domain of dementia, a discrepancy that informed the rationale for this study. DESIGN: A collective case study design was used to address the research aim and objectives. METHODS: Case studies from along the trajectory of dementia were provided by an international team of contributors from an inter-disciplinary background comprising nursing (general and mental health), social work and social science. RESULTS: The team's synthesis and analysis of the six case studies generated five repeating themes with each theme becoming components of a 'physical' domain of dementia. The five identified physical components were: (1) physical well-being, (2) physical health and examination, (3) physical care, (4) physical treatment and (5) physical environment. CONCLUSIONS: The development of a bio-psycho-social-physical model of dementia presents a holistic and culturally sensitive approach to understanding the experience of living with dementia, and to providing care and support in a variety of situations and contexts. RELEVANCE TO CLINICAL PRACTICE: The physical domain of dementia has particular relevance to nursing and nursing practice, such as providing physical care at the end-of-life. The interplay between the biological-psychological-social-physical domains of dementia and the trajectory of dementia could form the basis of clinical decision-making and practice.

A follow-up evaluation of the impact of the Chief Nursing Officer's review of mental health nursing in Mental Health Trusts and Universities in England: comparisons of two e-surveys.

AIMS: This article is a report of a study that aimed to establish a national picture of the implementation of Review recommendations over time in both Mental Health Trusts and Higher Education Institutions (Universities) in England. BACKGROUND: The 2006 Review of Mental Health Nursing in England by the Chief Nursing Officer made 17 key recommendations for Mental Health Trusts and Universities to improve mental health nursing. This article outlines key findings from a national survey of National Health Service Trusts and Universities in England with regard to prioritization and progress on implementation of these recommendations. METHODS: An e-survey was carried out in 2008-2009 based on the Chief Nursing Officer review recommendations and guidance. Participants included all Trusts which delivered mental health services (n = 68) and Universities which delivered pre-registration mental health nursing education (n = 50) in England. RESULTS: There appears to be some evidence that the Chief Nursing Officer review of Mental Health Nursing in England continues to be implemented in both Mental Health Trusts and Universities. There is variety in levels of implementation, but Mental Health Trusts and Universities broadly agree on priority areas. CONCLUSIONS: The Chief Nursing Officer review has been influential in focusing the care and education of mental health nurses and services in England. There appears to be a range of barriers and facilitators which aid the implementation of healthcare policy. More attention is required from researchers to enhance and evaluate the impact of policy implementation on the quality of care provided.

Strategies used by care home staff to manage behaviour that challenges in dementia: A systematic review of qualitative studies.

BACKGROUND: Psychotropic drugs are often prescribed to manage behaviour that challenges in care home residents with dementia but contravene guidelines as evidence shows their use increases the risk of strokes and death. Therefore, a review is needed that conceptualises understanding of the pharmacological and non-pharmacological strategies implemented by care home staff to manage behaviour that challenges in dementia and the factors that influence decision-making. This knowledge is important to develop dementia guidelines to implement a sustainable non-pharmacological approach to support residents with behaviour that challenges. AIM: To review qualitative studies to synthesise understanding of strategies implemented by care home staff to manage behaviour that challenges in dementia. METHODS: This systematic review involved a synthesis of qualitative data (PROSPERO protocol registration CRD42020165948). Searches of three electronic databases, PubMed, PsycINFO and CINAHL were conducted from inception until July 2021, supplemented by grey literature searches. Studies were included if they used qualitative methods and explored how care home staff respond to behaviour that challenges; data exploring other aspects of dementia care were excluded. Study quality was assessed using the Critical Appraisal Skills Programme checklist. Thematic synthesis was used to conceptualise understanding of the strategies implemented by care home staff to manage behaviour that challenges in dementia. FINDINGS: In total 1151 records were identified of which 34 studies were included in the review. Three themes emerged, 'Putting out the fires', refers to reactive strategies, implemented by staff to quell behaviour that challenges. However, if these strategies fail, staff may resort to pharmacological approaches for convenience to suppress these behaviours. The theme 'Personhood, human rights and respect' highlights the need for people with dementia to feel valued and useful by engaging residents in meaningful activities. Furthermore, the theme "Person focused approach - A paradigm shift" reflects changes in culture, required to implement non-pharmacological strategies to behaviour management these include staff training, collaboration and equitable decision-making. CONCLUSIONS: This review has identified strategies used by care home staff to manage behaviour that challenges. Non-pharmacological approaches to support residents with behaviour that challenges require staff training in behaviour management and psychotropic medicine management as part of their formal education program, and enhanced opportunities for collaboration and decision-making. In addition, residents should receive person focused support to facilitate participation in meaningful activities. These findings will be beneficial in developing guidelines to implement sustainable non-pharmacological approaches to manage behaviour that challenges in dementia.

The 'demented other' or simply 'a person'? Extending the philosophical discourse of Naue and Kroll through the situated self.

This article presents a critique of an article previously featured in Nursing Philosophy (10: 26-33) by Ursula Naue and Thilo Kroll, who suggested that people living with dementia are assigned a negative status upon receipt of a diagnosis, holding the identity of the 'demented other'. Specifically, in this critique, we suggest that unwitting use of the adjective 'demented' to define a person living with the condition is ill-informed and runs a risk of defining people through negative (self-)attributes, which has a deleterious impact upon that person's social and relational personae. Moreover, use of the locution 'demented' reinforces a divide between the 'demented' (them) and the 'healthy others' (us). Social constructionist theory, malignant positioning and viewing people with dementia as semiotic subjects are the philosophical pillars through which we construct the main arguments of the critique. The article concludes with the voice of one of the authors, a younger person with dementia, asking for language in dementia care to be carefully reconsidered and reframed and for the recognition of the diagnosed person's agency in the conduct of their day-to-day lives.

Developing a Management Guide (the DemPower App) for Couples Where One Partner Has Dementia: Nonrandomized Feasibility Study.

BACKGROUND: Promoting the health and well-being of couples where one partner has dementia is an overlooked area of care practice. Most postdiagnostic services currently lack a couple-centered approach and have a limited focus on the couple relationship. To help address this situation, we developed a tablet-based self-management guide (DemPower) focused on helping couples enhance their well-being and relationship quality. OBJECTIVE: The aim of this study is to investigate the feasibility and acceptability of the DemPower app. METHODS: A nonrandomized feasibility design was used to evaluate the DemPower intervention over 3 months among couples where a partner had a diagnosis of dementia. The study recruited 25 couples in the United Kingdom and 19 couples in Sweden. Outcome measures were obtained at baseline and postintervention. The study process and interventions were evaluated at various stages. RESULTS: The study was completed by 48% (21/44) of couples where one partner had dementia, of whom 86% (18/21) of couples accessed all parts of the DemPower app. Each couple spent an average of 8 hours (SD 3.35 hours) using the app during the study period. In total, 90% (19/21) of couples reported that all sections of DemPower were useful in addressing various aspects of daily life and helped to focus on how they interacted in their relationship. Of the 4 core subjects on which the DemPower app was structured, home and neighborhood received the highest number of visits. Couples used activity sections more often than the core subject pages. The perception of DemPower's utility varied with each couple's lived experience of dementia, geographic location, relationship dynamics, and opportunities for social interaction. A 5.2-point increase in the dementia quality of life score for people with dementia and a marginal increase in the Mutuality scale (+1.23 points) for caregiver spouses were found. Design and navigational challenges were reported in the DemPower app. CONCLUSIONS: The findings suggest that the DemPower app is a useful resource for couples where one partner has dementia and that the implementation of the app requires the support of memory clinics to reach couples at early diagnosis. TRIAL REGISTRATION: ISRCTN Registry ISRCTN10122979; http://www.isrctn.com/ISRCTN10122979.

Developing the evidence base for evaluating dementia training in NHS hospitals (DEMTRAIN): a mixed-methods study protocol.

INTRODUCTION: Around 70% of acute hospital beds in the UK are occupied by older people, approximately 40% of whom have dementia. Improving the quality of care in hospitals is a key priority within national dementia strategies. Limited research has been conducted to evaluate dementia training packages for staff, and evaluation of training often focuses on immediate, on-the-day training feedback and effects. OBJECTIVES: Our study aims to answer two research questions: (1) How do variations in content, implementation and intensity of staff dementia training in acute hospitals in England relate to health service outcome/process measures and staff outcomes? and (2) What components of staff dementia training are most strongly related to improved patient and staff outcomes? METHODS AND ANALYSIS: Using the principles of programme theory, a mixed-method study will be used to identify mechanisms and the interactions between them, as well as facilitators and barriers to dementia training in hospitals. We will use existing data, such as Hospital Episode Statistics, alongside two surveys (at hospital and staff level).We will recruit up to 193 acute hospitals in England to participate in the hospital level survey. We aim to recruit up to 30 staff members per hospital, from a random sample of 24 hospitals. In addition, we will explore the cost-effectiveness of dementia training packages and carry out an in-depth case study of up to six hospitals. ETHICS AND DISSEMINATION: The study has been reviewed and approved by the Faculty of Health and Medicine Research Ethics Committee (FHMREC 17056) and Health Research Authority (Integrated Research Approval System (IRAS) ID 242166: REC reference 18/HRA/1198). We plan to develop both standard (eg, academic publications, presentations at conferences) and innovative (eg, citizen scientist web portals, online fora, links with hospitals and third sector organisations) means of ensuring the study findings are accessible and disseminated regionally, nationally and internationally.

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.

Involving people living with dementia in research: an accessible modified Delphi survey for core outcome set development.

BACKGROUND: 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. METHODS: 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). RESULTS: 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. CONCLUSIONS: 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. TRIAL REGISTRATION: The study is registered on the COMET Initiative .

Designing and Implementing a Home-Based Couple Management Guide for Couples Where One Partner has Dementia (DemPower): Protocol for a Nonrandomized Feasibility Trial.

BACKGROUND: The increasing rate of dementia and high health and social care costs call for effective measures to improve public health and enhance the wellbeing of people living with dementia and their relational networks. Most postdiagnostic services focus on the condition and the person with dementia with limited attention to the caring spouse or partner. The key focus of the study is to develop a guide for couples where one partner has a diagnosis of dementia. This couple management guide is delivered in the form of an app, DemPower. OBJECTIVE: This study aims to investigate the feasibility and acceptability of DemPower and to assess the criteria for a full-integrated clinical and economic randomized control trial. DemPower couple management app will be introduced to couples wherein one partner has dementia. METHODS: The study will recruit 25 couples in the United Kingdom and 25 couples in Sweden. Couples will be given 3 months to engage with the app, and the amount of time taken to complete the guide (can be <3 or >3 months) will be reviewed. A set of outcome measures will be obtained at baseline and postintervention stages. RESULTS: The proposed study is at the recruitment phase. The DemPower app is being introduced to couples from consultation groups at a pretrial phase for identifying any bugs and exploring if any navigation challenges exist. The feasibility testing will begin in April 2018. CONCLUSIONS: The study will determine how much support couples need to engage with DemPower and whether or not they make use of it in their everyday lives. If there is support for app use, a future study will assess whether it is superior to "usual care." TRIAL REGISTRATION: International Standard Randomized Controlled Trial Number (ISRCTN): 10122979; http://www.isrctn.com/ISRCTN10122979 (Archived by WebCite at http://www.webcitation.org/70rB1iWYI). REGISTERED REPORT IDENTIFIER: RR1-10.2196/9087.

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.

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.

BACKGROUND: The 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/DESIGN: Drawing on the guidance and approaches of the Core Outcome Measures in Effectiveness Trials (COMET), this study uses a four-phase mixed-methods design: 1 Focus 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. 2 Two 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. 3 A 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. 4 A stated preference survey will elicit the preferences of key stakeholders for the outcomes identified as important to measure in the COS. DISCUSSION: To 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 REGISTRATION: The study is registered on the COMET initiative, registered in 2014 at comet-initiative.org .

Vitamin D status and bone mass in UK South Asian women.

INTRODUCTION: Low vitamin D status is prevalent among South Asians living in the UK. The relationship, however, between serum 25-hydroxyvitamin D level (25OHD), serum parathyroid level (PTH) and bone mass in this group of women is unknown. The aim of this study was to determine the association between serum PTH, 25OHD and bone mass in a population based sample of young UK South Asian women. MATERIALS AND METHODS: Names of South Asian women aged 18 to 36 years of Pakistani origin living in the Greater Manchester area were identified from primary care registers using validated computer software. Subjects were invited to attend for (i) a blood test for assessment of serum calcium (Ca), albumin, PTH and 25OHD and (ii) for bone mineral density (BMD) scanning using the following: areal BMD at the hip (femoral neck, total hip) and lumbar spine using dual X-ray absorptiometry (Hologic QDR 4500), and volumetric BMD at the distal radius using peripheral quantitative computed tomography (Norland Stratec XCT 2000). Linear regression was used to determine the association between serum 25OHD, PTH and BMD at the different sites with adjustments made for age. RESULTS: In all, 78 women (mean age 29.2 years) were included in the analysis. Mean serum Ca level was 2.42 mmol/l, 25OHD, 7.9 ng/ml and PTH, 52.8 pg/ml. The majority of women (94%) had serum 25OHD levels 15 ng/ml, though rose progressively in subjects with levels below 10 ng/ml. Serum 25OHD was positively associated with BMD at the hip and spine while PTH was negatively associated with BMD at the hip and spine. When categorized by serum 25OHD level there was an increase in BMD at the total hip and distal radial site at least up to levels of 15 ng/ml. CONCLUSIONS: Despite widespread recognition, hypovitaminosis D is still prevalent among young UK South Asian women. In these women a decrease in serum 25OHD level