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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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

The risk of living with dementia and, separately, cancer, increases exponentially with age. However, to date, there is a paucity of research investigating the experiences of people living with both these conditions. This study used semi-structured interviews to explore the decision-making and treatment options for people who live with both dementia and cancer. In total, ten people living with both dementia and cancer (aged 39–93 years) and nine family carers were interviewed. Braun and Clarke's approach to thematic analysis was used together with framework matrices to organise the data. In this article four sequential and descriptive themes are presented. 'Reaching a diagnosis of cancer' describes the vital role that family carers play in encouraging the person with dementia to seek an explanation for their presenting (undiagnosed cancer) symptoms to their general practitioner. 'Adjusting to the cancer diagnosis when living with dementia' outlines a variety of emotional and practical responses to receiving news of the diagnosis. 'Weighing up the cancer treatment options' highlights the different decisions and circumstances that family carers and people living with both dementia and cancer are faced with post-diagnosis. 'Undergoing cancer treatment' shares the finding that cancer treatment decision-making was not straightforward and that people living with both dementia and cancer would often forget about their cancer and what procedures they had been through. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

This review aimed to explore the psychological, social and emotional benefits of music activities for people living with dementia through a systematic review of qualitative literature. Eighteen studies were identified that covered a wide range of music programmes for people with dementia, with the majority of programmes focusing on active musical participation. A thematic synthesis revealed four key benefits of music engagement for people with dementia, namely: Taking Part, Being Connected, Affirming Identity and Immersion "in the moment". Overall, engaging with music was seen to have a number of psychological, social and emotional benefits for people with dementia. However, only seven studies actively included people with dementia in the research process. Going forward, it would appear essential that people with dementia are encouraged to take a more active role in research exploring musical experiences and that a heightened emphasis is placed upon participatory approaches to knowledge generation. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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." [ABSTRACT FROM AUTHOR]

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. To review qualitative studies to synthesise understanding of strategies implemented by care home staff to manage behaviour that challenges in dementia. 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. 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. 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. [ABSTRACT FROM AUTHOR]