Establishing and sustaining high-quality services for people with young onset dementia: the perspective of senior service providers and commissioners.

Objectives: We aimed to understand the facilitators to developing and sustaining high-quality services for people with young onset dementia (YOD) and their families/supporters.

Design: This qualitative study used semi-structured interviews with commissioners and service managers, analyzed using inductive thematic analysis.

Setting: A purposive sample of providers was selected from diverse areas and contrasting YOD services.

A Systematic Review of the Effectiveness of Educational Interventions in Promoting Person-Centred Care in Dementia Services.

Objectives: To review evidence about the effectiveness of educational programmes in promoting the delivery of person-centered care by staff in dementia services.

Methods: Several databases were searched, and the methodological quality of identified studies systematically evaluated. A summary mean effect size was calculated for several types of outcome (direct knowledge, applied knowledge, attitudes, self-reported and observed working practices).

Lessons learnt from delivering the public and patient involvement forums within a younger onset dementia project.

Including the 'voices' of people living with dementia in a meaningful way is pivotal in shaping local, national and international health and social dementia care research. The Alzheimer's Society (United Kingdom) funded Angela Project (2016-19) was aimed at improving the diagnosis and post-diagnostic support for younger people living with dementia. From the outset, the Project Team ensured that the knowledge and expertise of people living with a younger onset dementia was integral to all decisions taken in respect to overall project design, implementation, and dissemination processes.

Implementation processes in a cognitive rehabilitation intervention for people with dementia: a complexity-informed qualitative analysis.

Objectives: Healthcare is often delivered through complex interventions. Understanding how to implement these successfully is important for optimising services. This article demonstrates how the complexity theory concept of 'self-organisation' can inform implementation, drawing on a process evaluation within a randomised controlled trial of the GREAT (oal-oriented cognitive ehabilitation in arly-stage lzheimer's and related dementias: a multi-centre single-blind randomised controlled rial) intervention which compared a cognitive rehabilitation intervention for people with dementia with usual treatment.

Helpful post-diagnostic services for young onset dementia: Findings and recommendations from the Angela project.

There is a significant lack of evidence regarding optimum models for service provision in young onset dementia (YOD). Our study aim was to gather detailed information about services experienced as helpful by those with YOD and family carers. The objective was to identify the core features of these services to inform service design, delivery and improvements.

Impact of dementia education and training on health and social care staff knowledge, attitudes and confidence: a cross-sectional study.

Objectives: The aim of this study was to establish the impact of dementia education and training on the knowledge, attitudes and confidence of health and social care staff. The study also aimed to identify the most effective features (content and pedagogical) of dementia education and training.

Design: Cross-sectional survey study.

Effectiveness-implementation hybrid type 2 study evaluating an intervention to support 'information work' in dementia care: an implementation study protocol.

Introduction: Patients with long-term conditions consistently report a lack of information around services and support available to them. This unmet need for information is significant among people with dementia and family carers. A quality improvement intervention is being carried out to tackle this issue as part of a co-creation initiative in the North East of England (UK).

Receiving a diagnosis of young onset dementia: Evidence-based statements to inform best practice.

Introduction: Better understanding of patient experience is an important driver for service improvements and can act as a lever for system change. In the United Kingdom, the patient experience is now a central issue for the National Health Service Commissioning Board, clinical commissioning groups and the providers they commission from. Traditionally, dementia care in the United Kingdom has focused predominantly on the individual experience of those with late onset dementia, while the voice of those with young onset dementia has been, comparatively, unheard.

How people of African Caribbean or Irish ethnicity cope with long-term health conditions in UK community settings: A systematic review of qualitative, quantitative and mixed method studies.

Living with a chronic or mental health condition can be challenging and requires considerable adjustment. As ways of coping are culturally influenced, it is important to understand how minority ethnic populations cope, to inform appropriate services. This review aimed to explore the coping strategies used by UK residents from an African Caribbean or Irish background between 1960 and 2020.

Using technology to support the emotional and social well-being of nurses: A scoping review.

Aims: (a) To review the literature on the use of technology to offer emotional and social support to nurses; (b) to identify and evaluate gaps in the research; (c) to assess whether a systematic review would be valuable and (d) to make recommendations for future research.

Design: A robust methodological scoping framework was used as the basis for this review design. A manualized systematic approach to quality appraisal was implemented.

Goal-oriented cognitive rehabilitation for early-stage Alzheimer's and related dementias: the GREAT RCT.

Background: Cognitive rehabilitation (CR) is an individualised, person-centred intervention for people with mild to moderate dementia that addresses the impact of cognitive impairment on everyday functioning.

Objectives: To determine whether or not CR is a clinically effective and cost-effective intervention for people with mild to moderate Alzheimer's disease or vascular or mixed dementia, and their carers.

Design: This multicentre randomised controlled trial compared CR with treatment as usual (TAU).

Individual goal-oriented cognitive rehabilitation to improve everyday functioning for people with early-stage dementia: A multicentre randomised controlled trial (the GREAT trial).

Objectives: To determine whether individual goal-oriented cognitive rehabilitation (CR) improves everyday functioning for people with mild-to-moderate dementia.

Design And Methods: Parallel group multicentre single-blind randomised controlled trial (RCT) comparing CR added to usual treatment (CR) with usual treatment alone (TAU) for people with an ICD-10 diagnosis of Alzheimer, vascular or mixed dementia, and mild-to-moderate cognitive impairment (Mini-Mental State Examination [MMSE] score ≥ 18), and with a family member willing to contribute. Participants allocated to CR received 10 weekly sessions over 3 months and four maintenance sessions over 6 months.

Relationship continuity and person-centred care in how spouses make sense of challenging care needs.

Some spouses providing care for a partner with dementia experience continuity in the relationship: Despite the changes that have occurred, the person with dementia and the relationship are felt to be essentially the same as they were before the dementia. Others experience discontinuity: The person and the relationship feel very different. Previous qualitative research has suggested that continuity may be linked with the delivery of more person-centred care.

Involving minority ethnic communities and diverse experts by experience in dementia research: The Caregiving HOPE Study.

Patient and public involvement is imperative to ensure relevance of research. There is a growing literature on the theoretical underpinning on patient and public involvement including level and processes of involvement. The aim of this paper is to describe a person-centred and culturally sensitive approach to working with minority ethnic communities, involving carers, people living with dementia, members of the public and carer support workers, as used in the Caregiving HOPE study; and the influence of the approach on the study's research processes and outcomes.

Development of an Item Pool for a Needs-Based Measure of Quality of Life of Carers of a Family Member with Dementia.

Background And Objectives: This paper describes the development of an item pool for a needs-based self-report outcome measure of the impact of caring for a relative, friend or neighbour with dementia on carer quality of life. The aims are to give a detailed account of the steps involved and describe the resulting item pool.

Methods: Seven steps were followed: generation of an initial item set drawing on 42 needs-led interviews with carers; a content and face validity check; assessment of psychometric potential; testing of response formats; pre-testing through cognitive interviews with 22 carers; administration rehearsal with two carers; and final review.

Development of the Adolescent Attitudes towards Dementia Scale (A-ADS).

Objective: There has been an increasing interest in establishing dementia friendly communities leading to the development and delivery of various dementia awareness initiatives. These initiatives have generally been aimed at adults; however, to sustain dementia friendly communities, the involvement of young people is imperative. Very few dementia awareness initiatives exist for young people, and none have been independently evaluated to establish their impact.

A Needs-led Framework for Understanding the Impact of Caring for a Family Member With Dementia.

Background And Objectives: Approximately half the care for people with dementia is provided by families. It is therefore imperative that research informs ways of maintaining such care. In this study, we propose that a needs-led approach can provide a useful, novel means of conceptualizing the impact of caring on the lives of family carers.

Evaluation of a carers' information programme culturally adapted for South Asian families.

Objectives: The Alzheimer's Society has culturally adapted an Information Programme for South Asian families (IPSAF) who support an individual living with dementia. The objectives of this evaluation were to establish whether IPSAF had an immediate and medium-term impact on those who attended and how it impacted on the wider family and the person with dementia.

Methods: An inclusive, pluralistic approach was adopted.

Factors Underpinning Caregiver Burden in Frontotemporal Dementia Differ in Spouses and their Children.

The objectives of this observational study were to (1) compare spousal and child caregiver burden; (2) compare co-resident and live-out child caregiver burden; and (3) investigate factors influencing spousal and child caregiver burden. Data was collected from 90 caregivers of people with frontotemporal degeneration (FTD) recruited from the Frontotemporal Dementia Research Group (Frontier) at Neuroscience Research, Australia. Of this caregiver group, 43 were spousal caregivers and 47 were child caregivers.

Relationship continuity and emotional well-being in spouses of people with dementia.

Objectives: Qualitative research has suggested that spousal experiences of discontinuity in their relationship with a person who has dementia (i.e. the relationship is experienced as radically changed) may contribute to heightened feelings of burden, entrapment, isolation, guilt and intolerance of behaviours that challenge.

Living with a diagnosis of behavioural-variant frontotemporal dementia: The person's experience.

Research investigating behavioural-variant frontotemporal dementia has concentrated on identifying and quantifying people's difficulties; yet few studies have considered how people with behavioural-variant frontotemporal dementia make sense of their difficulties. Five participants were interviewed and interpretive phenomenological analysis used to analyse the data. Two superordinate themes emerged: 'Bewilderment' and 'Relationships with others'.

Psychosocial interventions for people with dementia: An overview and commentary on recent developments.

An influential review in 2010 concluded that non-pharmacological multi-component interventions have positive effects on cognitive functioning, activities of daily living, behaviour and mood of people with dementia. Our aim here is to provide an up-to-date overview of research into psychosocial interventions and their impact on psychosocial outcomes. We focused on randomised controlled trials, controlled studies and reviews published between October 2008 and August 2015, since the earlier review.

Perceptions of dementia and use of services in minority ethnic communities: a scoping exercise.

Despite the rapidly ageing population and a predicted sevenfold increase in the prevalence of dementia in minority ethnic communities, people from these communities remain under-represented in specialist dementia services. Leventhal's Model of Self-Regulation suggests perceptions of illness facilitate help-seeking behaviours such as the use of services. This scoping exercise makes use of the model to explore perceptions of dementia in British Indian, African and Caribbean, and East and Central European communities in the United Kingdom.

Consensus views on advance care planning for dementia: a Delphi study.

The uptake of advance care planning (ACP) is particularly low among people with dementia. This may reflect barriers to communication between professionals, patients and families in the face of lack of consensus about the process. This study aimed to methodically investigate consensus views of how ACP should be explained and carried out with people with dementia.