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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 .

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.

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: 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. 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. 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. 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 .

Plain English summary There 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. Background 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.

IntroductionAround 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.ObjectivesOur 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 analysisUsing 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 disseminationThe 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.

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. The aim of this study is to investigate the feasibility and acceptability of the DemPower app. 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. 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. 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. ISRCTN Registry ISRCTN10122979; http://www.isrctn.com/ISRCTN10122979.

The term ‘in the moment’ has received growing interest in the context of music programmes for people living with dementia, with music therapists, family carers, health-care professionals and people living with dementia themselves reporting the value of framing musical experiences in the ‘here and now’. Although this term is being used more frequently within the literature, there has yet to be a formal examination of such ‘in the moment’ musical experiences and how they might benefit a person living with dementia. We used a multiple-case study approach to develop a thematic framework of ‘in the moment’ musical experiences within the context of a music-making programme for people living with dementia. The research followed six people living with dementia and four family carers, and used video-observation and video-elicitation interviews to capture and analyse ‘in the moment’ experiences. Four thematic observations were developed which captured ‘in the moment’ musical experiences: Sharing a life story through music, Musical agency ‘in the moment’, Feeling connected ‘in the moment’ and Musical ripples into everyday life. These findings showcase the creativity and musical abilities of people living with dementia whilst affirming music as a medium to connect people living with dementia with their own life story, other people and the environments in which music-making takes place.

This article draws upon six social research studies completed by members of the Dementia and Ageing Research Team at The University of Manchester and their associated networks over an eight-year period (2011–2019) with the aim of constructing a definition of ‘being in the moment’ and situating it within a continuum of moments that could be used to contextualise and frame the lived experience of dementia. Using the approach formulated by Pound et al. (2005) in synthesising qualitative studies, we identified this continuum of moments as comprising four sequential and interlinked steps: (a) ‘creating the moment’, defined as the processes and procedures necessary to enable being in the moment to take place – the time necessary for this to occur can range from fleeting to prolonged; (b) ‘being in the moment’, which refers to the multi-sensory processes involved in a personal or relational interaction and embodied engagement – being in the moment can be sustained through creativity and flow; (c) ‘ending the moment’, defined as when a specific moment is disengaged – this can be triggered by the person(s) involved consciously or subconsciously, or caused by a distraction in the environment or suchlike; and (d) ‘reliving the moment’, which refers to the opportunity for the experience(s) involved in ‘being in the moment’ to be later remembered and shared, however fragmentary, supported or full the recall.

IntroductionCaring for someone with moderate to advanced dementia can be burdensome and time consuming. Understanding the nature and impact of such family caregiving at home is important to plan effective care, especially towards the end of life. Synthesising existing research will allow greater insight into this experience.AimsTo understand the experiences of family carers of people living with moderate to advanced dementia in a domestic home setting.MethodsSystematically constructed review of qualitative research using a narrative synthesis approach. Databases (MEDLINE, CINAHL, EMBASE, PsychINFO, Web of Science and Academic Search Complete) were systematically searched from 1984 onwards, combining concepts of family carers, moderate and advanced dementia, and care within a domestic home setting. Similarities and differences between papers were grouped using textual narrative synthesis.ResultsIncluded papers (n=17) incorporated those focused on caring for people with advanced dementia (n=8), and those with moderate dementia (n=9). Family carers reported an experience of loss, burden and grief. Psychological distress was experienced due to internal conflict while caring. Although these experiences have a negative impact on general health, an improvement in the family carer’s inter-relationships and the feeling of being useful were positive aspects of caregiving.ConclusionsFamily carers’ justifications and determinants for balancing challenges and possible distress to morals remain unclear. A complete description of all their experiences may be inadequate in conveying an acknowledgement of the illness within home-based caregiving. The caregiver-attributed personified value resulted in holding on to what remains of the care recipient for longer. Research is required to ascertain how family carers may proportionally balance their personified loss with their personified value earlier in the disease trajectory.ImpactFear of losing a care recipient’s personified value may affect how home-based caregiving is viewed by family carers and their willingness to accept or continue home-based caregiving.

ObjectivesLittle 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.DesignCross-sectional qualitative study. Semistructured interviews were conducted face to face with participants. Interviews were audio recorded and transcribed prior to thematic analysis.SettingPatients 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.ParticipantsPurposeful sample of 10 patients with a diagnosis of cancer–dementia, informal caregivers (n=9) and oncology HCPs (n=12).ResultsFour 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.ConclusionsAlthough 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.