Creating and Reliving the Moment: Using Musical Improvisation and Care Aesthetics as a Lens of Connection and Self-Expression for Younger People Living with Dementia.

Musical improvisation is a generative process of spontaneously creating music 'in the moment'. For people with young onset dementia, musical improvisation provides an extended opportunity for creative self-expression and connection to one's own body and life story. Using visual research methods, including video elicitation interviews, this paper explores the 'in the moment' musical experiences of five people living with young onset dementia who took part in a 15-week improvised music-making programme (Music in Mind).

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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

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.

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 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.

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.

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.

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.

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.