Process evaluation of a New psychosocial goal-setting and manualised support intervention for Independence in Dementia (NIDUS-Family).

Introduction: We report a mixed-methods process evaluation embedded within a randomised controlled trial. We aimed to test and refine a theory of change model hypothesising key causal assumptions to understand how the New Interventions for Independence in Dementia Study (NIDUS)-Family (a manualised, multimodal psychosocial intervention), was effective relative to usual care, on the primary outcome of Goal Attainment Scaling (GAS) over 1 year.

Methods: In 2021-2022, intervention-arm dyads completed an acceptability questionnaire developed to test causal assumptions.

Pre-implementation planning for a new personalised, dementia post-diagnostic support intervention: exploring the perspective of professional stakeholders.

Background: Only a third of people with dementia receive a diagnosis and post-diagnostic support. An eight session, manualised, modular post-diagnostic support system (New Interventions for Independence in Dementia Study (NIDUS) - family), delivered remotely by non-clinical facilitators is the first scalable intervention to improve personalised goal attainment for people with dementia. It could significantly improve care quality.

Chatting: Family Carers' Perspectives on Receiving Support from Dementia Crisis Teams.

Family caregivers are vital to enabling people with dementia to live longer in their own homes. For these caregivers, chatting with clinicians-being listened to empathetically and receiving reassurance-can be seen as not incidental but important to supporting them. This paper considers and identifies the significance of this relational work for family carers by re-examining data originally collected to document caregivers' perspectives on quality in crisis response teams.

Evaluating an interactive tool that reasons about quality of life to support life planning by older people.

Objectives: In response to the lack of digital support for older people to plan their lives for quality of life, research was undertaken to co-design and then evaluate a new digital tool that combined interactive guidance for life planning with a computerised model of quality of life.

Method: First, a workshop-based process for co-designing the SCAMPI tool with older people is reported. A first version of this tool was then evaluated over eight consecutive weeks by nine older people living in their own homes.

A process evaluation of the NIDUS-Professional dementia training intervention for UK homecare workers.

Introduction: This process evaluation was conducted in parallel to the randomised controlled feasibility trial of NIDUS-Professional, a manualised remote dementia training intervention for homecare workers (HCWs), delivered alongside an individualised intervention for clients living with dementia and their family carers (NIDUS-Family). The process evaluation reports on: (i) intervention reach, dose and fidelity; (ii) contexts influencing agency engagement and (iii) alignment of findings with theoretical assumptions about how the intervention might produce change.

Methods: We report proportions of eligible HCWs receiving any intervention (reach), number of sessions attended (dose; attending ≥4/6 main sessions was predefined as adhering), intervention fidelity and adherence of clients and carers to NIDUS-Family (attending all 6-8 planned sessions).

Feasibility and acceptability of NIDUS-professional, a training and support intervention for homecare workers caring for clients living with dementia: a cluster-randomised feasibility trial.

Introduction: In the first randomised controlled trial of a dementia training and support intervention in UK homecare agencies, we aimed to assess: acceptability of our co-designed, manualised training, delivered by non-clinical facilitators; outcome completion feasibility; and costs for a future trial.

Methods: This cluster-randomised (2:1) single-blind, feasibility trial involved English homecare agencies. Intervention arm agency staff were offered group videocall sessions: 6 over 3 months, then monthly for 3 months (NIDUS-professional).

An exploration of how specialist dementia nurses perceive and maintain the skills and competencies that frame their specialism: A qualitative survey.

Background: UK policy for complex and long-term health conditions including dementia has recommended that specialist nursing intervention is offered across the trajectory of the condition, but there is a lack of agreement regarding the skills and competencies that specialist nurses are expected to possess. Admiral Nurses are the largest UK group of specialist dementia nurses.

Objective: To explore how Admiral Nurses met and were supported to meet competencies as defined in the Admiral Nurse Competency Framework, and to develop and maintain skills as dementia specialists.

A psychosocial goal-setting and manualised support intervention for independence in dementia (NIDUS-Family) versus goal setting and routine care: a single-masked, phase 3, superiority, randomised controlled trial.

Background: Although national guidelines recommend that everyone with dementia receives personalised post-diagnostic support, few do. Unlike previous interventions that improved personalised outcomes in people with dementia, the NIDUS-Family intervention is fully manualised and deliverable by trained and supervised, non-clinical facilitators. We aimed to investigate the effectiveness of home-based goal setting plus NIDUS-Family in supporting the attainment of personalised goals set by people with dementia and their carers.

Risk assessment for people living with dementia: a systematic review.

Objective: This systematic review identified key components of risk assessment for people with dementia, examined attitudes toward risk identification and risk assessment, and appraised existing risk assessment tools.

Methods: Systematic searches of five databases on two platforms (EBSCO, OVID) and gray literature databases (Open Grey, Base) were conducted. Studies were screened for inclusion based on predetermined eligibility criteria and quality assessed using the Mixed Methods Appraisal Tool.

Specialist dementia nursing models and impacts: a systematic review.

Purpose Of Review: Dementia policy priorities recommend that people who are living with dementia and their family should have access to support and interventions delivered by dementia specialists, including specialist nurses. However, specialist dementia nursing models and role-related competencies are not clearly defined. We systematically review the current evidence regarding specialist dementia nursing models and their impacts.

Caring for people living with dementia in their own homes: A qualitative study exploring the role and experiences of registered nurses within a district nursing service in the UK.

Background: In the UK, district nursing services (DNS) deliver care to people intheir own homes and have regular contact with people with dementia. Research conducted with nurses working in similar roles outside the UK suggests their contribution to high quality dementia care is limited by compassion fatigue, lack of dementia training and low levels of confidence. However, there is a paucity of research exploring the role and learning and support needs of nurses within DNS.

Achieving Quality and Effectiveness in Dementia Using Crisis Teams (AQUEDUCT): a study protocol for a randomised controlled trial of a Resource Kit.

Background: Improving care at home for people with dementia is a core policy goal in the dementia strategies of many European countries. A challenge to effective home support is the occurrence of crises in the care of people with dementia which arise from changes in their health and social circumstances. Improving the management of these crises may prevent hospital admissions and facilitate better and longer care at home.

The Bubble of Normalisation: A Qualitative Study of Carers of People With Dementia Who Do Not Seek Help for a Diagnosis.

Objective: Improving dementia diagnosis rates are a key feature of dementia strategy and policy worldwide. This study aimed to explore the experience of carers of people diagnosed with dementia during or following a hospital admission in order to identify factors that had prevented them from seeking help beforehand. Semi-structured interviews were conducted with 12 informal carers including adults caring for a parent, a friend or a spouse diagnosed with dementia between 2010-2019, following an acute hospital admission for a physical health problem, having not sought help previously.

What are the experiences and the perceptions of service users attending Emergency Department for a mental health crisis? A systematic review.

Historically, dualistic healthcare systems have resulted in limited mental healthcare provision within physical health settings, with service users reporting poor care specifically while attending emergency departments (EDs) in a mental health crisis. Modern approaches to healthcare recognize these inequalities and are moving towards integrating healthcare systems that allow more holistic and seamless experiences for service users. This mixed-method review examines the experiences and perceptions of service users attending EDs for a mental health crisis.

Clinical and cost-effectiveness of a New psychosocial intervention to support Independence in Dementia (NIDUS-family) for family carers and people living with dementia in their own homes: a randomised controlled trial.

Background: Most people living with dementia want to remain living in their own homes and are supported to do so by family carers. No interventions have consistently demonstrated improvements to people with dementia's life quality, functioning, or other indices of living as well as possible with dementia. We have co-produced, with health and social care professionals and family carers of people with dementia, a new intervention (NIDUS-family).

Needs of older persons living in long-term care institutions: on the usefulness of cluster approach.

Background: Long-term care units' residents do not constitute a homogeneous population. Providing effective care, tailored to individual needs, is crucial in this context. It can be facilitated by suitable tools and methods, which include needs assessment along with the physical, psychological and social aspects of care.

Development of an Evidence-Based Best Practice Model for Teams Managing Crisis in Dementia: Protocol for a Qualitative Study.

Background: Teams working in the community to manage crisis in dementia currently exist, but with widely varying models of practice, it is difficult to determine the effectiveness of such teams.

Objective: The aim of this study is to develop a "best practice model" for dementia services managing crisis, as well as a set of resources to help teams implement this model to measure and improve practice delivery. These will be the best practice tool and toolkit to be utilized by teams to improve the effectiveness of crisis teams working with older people with dementia and their caregivers.

Developing a model of best practice for teams managing crisis in people with dementia: a consensus approach.

Background: Teams delivering crisis resolution services for people with dementia and their carers provide short-term interventions to prevent admission to acute care settings. There is great variation in these services across the UK. This article reports on a consensus process undertaken to devise a Best Practice Model and evaluation Tool for use with teams managing crisis in dementia.

Persistent barriers and facilitators to seeking help for a dementia diagnosis: a systematic review of 30 years of the perspectives of carers and people with dementia.

Objective: To identify barriers and facilitators to help seeking for a dementia diagnosis from the perspective of carers and people with dementia.

Design: A systematic review of the literature was conducted according to the PRISMA guidelines (PROSPERO protocol registration CRD42018092524). Nine electronic databases were searched for qualitative, quantitative, and mixed methods primary research studies.

Why do staff and family think differently about quality of life in dementia? A qualitative study exploring perspectives in care homes.

Background: Quality of life is important especially in incurable illness. In dementia, we often need proxy reports of quality of life, but we know little about how individuals make their judgements. In care homes, proxies may be staff providing care or relatives, but staff rate quality of life differently to family.

Clinical effectiveness of the START (STrAtegies for RelaTives) psychological intervention for family carers and the effects on the cost of care for people with dementia: 6-year follow-up of a randomised controlled trial.

Background: The START (STrAtegies for RelaTives) intervention reduced depressive and anxiety symptoms of family carers of relatives with dementia at home over 2 years and was cost-effective.

Aims: To assess the clinical effectiveness over 6 years and the impact on costs and care home admission.

Method: We conducted a randomised, parallel group, superiority trial recruiting from 4 November 2009 to 8 June 2011 with 6-year follow-up (trial registration: ISCTRN 70017938).

Effectiveness of an intervention to facilitate prompt referral to memory clinics in the United Kingdom: Cluster randomised controlled trial.

Background: Most people with dementia do not receive timely diagnosis, preventing them from making informed plans about their future and accessing services. Many countries have a policy to increase timely diagnosis, but trials aimed at changing general practitioner (GP) practice have been unsuccessful. We aimed to assess whether a GP's personal letter, with an evidence-based leaflet about overcoming barriers to accessing help for memory problems-aimed at empowering patients and families-increases timely dementia diagnosis and patient presentation to general practice.

Caring for relatives with agitation at home: a qualitative study of positive coping strategies.

Background: Trials of psychological interventions for reducing agitation in people with dementia living at home have been unsuccessful.

Aims: To inform future interventions by identifying successful strategies of family carers with relatives with dementia and agitation living at home.

Method: Qualitative in-depth individual interviews were performed with 18 family carers.