Good Practice in Needs-based Post-diagnostic Support for People with Young Onset Dementia: Findings from the Angela Project.

Evidence on post-diagnostic support for people with young onset dementia is scarce. Previous studies have employed a problem-focused approach; however, evidence on 'what works' in real-life practice is essential to develop recommendations for service design and delivery. This study aimed to provide insight into 'what works' from the perspectives of people with young onset dementia and their supporters.

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.

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.

Current UK clinical practice in diagnosing dementia in younger adults: compliance with quality indicators in electronic health records from mental health trusts.

Objectives: To examine current UK practice in diagnosis of patients under 65 with young onset dementia, within 5 years of date of diagnosis, identified from electronic health records of 8 NHS mental health trusts.

Methods: Patients diagnosed with young onset dementia were assembled from the UK-Clinical Record Interactive System, (UK-CRIS) using diagnosis of dementia as the index date. A pre-designed proforma, derived by international Delphi consensus from experts in the field in previous work, was used to assess components of the diagnostic assessment in 402 electronic health records across 8 NHS sites.

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.

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.

Services for people with young onset dementia: The 'Angela' project national UK survey of service use and satisfaction.

Objectives: Young onset dementia is associated with distinctive support needs but existing research on service provision has been largely small scale and qualitative. Our objective was to explore service use, cost and satisfaction across the UK.

Methods: Information about socio-demographic characteristics, service use and satisfaction were gathered from people with young onset dementia (YOD) and/or a family member/supporter via a national survey.

International consensus on quality indicators for comprehensive assessment of dementia in young adults using a modified e-Delphi approach.

Objective: To develop guidance for clinicians about essential elements that can support clinical decision-making in the diagnostic workup of young onset dementia.

Methods/design: Three iterations of a modified e-Delphi consensus survey comprising 23 international expert clinicians specialising in diagnosis of young onset dementia.

Outcome Measures: A priori consensus was pre-defined as 80% of experts ranking statements in the upper threshold on a seven-point Likert scale that ranged from "not important at all" to "absolutely essential" to diagnosis.

The nature of positive post-diagnostic support as experienced by people with young onset dementia.

Objectives: Studies on service needs of people with young onset dementia have taken a problem-oriented approach with resulting recommendations focusing on reducing service shortcomings. This study aimed to build on 'what works' in real-life practice by exploring the nature of post-diagnostic support services that were perceived positively by younger people with dementia and carers.

Method: Positive examples of support were gathered between August 2017 and September 2018, via a national survey.

Receiving a diagnosis of young onset dementia: a scoping review of lived experiences.

Objectives: Personal experiences of receiving a diagnosis of young onset dementia (YOD) are often overlooked in a complex assessment process requiring substantial investigation. A thematic synthesis of published until November 2018 qualitative studies was completed to understand the lived experiences of younger people. This informed a Delphi study to learn how diagnostic processes could be improved, identify the strengths and weaknesses of current approaches, and help educate professionals concerning key issues.

Young-onset dementia: scoping review of key pointers to diagnostic accuracy.

Background: Routine psychiatric assessments tailored to older patients are often insufficient to identify the complexity of presentation in younger patients with dementia. Significant overlap between psychiatric disorders and neurodegenerative disease means that high rates of prior incorrect psychiatric diagnosis are common. Long delays to diagnosis, misdiagnosis and lack of knowledge from professionals are key concerns.

The Balanced Participation Model: Sharing opportunities for giving people with early-stage dementia a voice in research.

Much has been written about the stigmatisation and discrimination ascribed to people with dementia in society and in research. This marginalisation has led to a silencing of their voices and their experiences both on a national and international scale, and an often limited understanding about how people with dementia experience daily life. In this study, a participatory research project was conducted in collaboration with people with early-stage dementia who attended an adult school in Denmark.

Going back to school - An opportunity for lifelong learning for people with dementia in Denmark (Innovative practice).

The provision of lifelong learning for older people is often promoted as a way of engaging socially and maintaining cognitive function. The concept is also used with people with dementia, but is often limited to short-term programmes. Innovative practice from Denmark takes this concept further, offering people with early stage dementia the opportunity to return to school to attend classes in cognitive training, music, art and woodcraft.

Introducing students to clinical audit.

It is more than a decade since the UK Central Council for Nursing Midwifery and Health Visiting said that engaging with clinical audit is 'the business of every registered practitioner', yet there appears to be little evidence that nursing has embraced the process. To address this issue, Northampton General Hospital and the University of Northampton implemented a pilot project in which two third-year adult nursing students worked on a 'real life' audit. Supported by the hospital's audit department, and supervised by academic tutors with the relevant experience, the students worked on a pressure-ulcer care audit for their final year dissertation.

An evaluation of a Singing for the Brain pilot with people with a learning disability and memory problems or a dementia.

This paper presents the findings from a pilot project introducing Singing for the Brain into care centres with people with a learning disability and a form of dementia or memory problem. Through participant observations, patient and staff feedback, there was strong support for the use of Singing for the Brain with this client group, with participants reporting high levels of enjoyment and engagement in the sessions. The potential for these sessions to support communication, memory, social engagement and choice was reported by staff and participants.

'Going into the unknown': experiences of male patients in secure settings during environmental transition.

Little is known about the experiences of male patients in secure mental health and intellectual disability units during environmental transition. We interviewed patients before (n = 9) and after (n = 8) a side-to-side security transition from medium-secure wards in an older building to new wards in a purpose-built building. We inquired about transitional experiences in general and about this transition specifically.

Partners in projects: preparing for public involvement in health and social care research.

In recent years, several UK and, international funders of health and social care related research have adopted the policy of requiring explicit evidence of the 'public' voice in all aspects of project design. For many academic researchers engaged within research, evaluations or audit projects, this formal requirement to actively engage members of the public will present them with both benefits and challenges to securing knowledgeable, skilled, and confident lay representation onto project teams. This could potentially lead to the exploitation of those individuals who are available, appropriately informed, and adequately prepared for such activities.

European study of frequency of participation of adolescents with and without cerebral palsy.

Children with cerebral palsy participate less in everyday activities than children in the general populations. During adolescence, rapid physical and psychological changes occur which may be more difficult for adolescents with impairments. Within the European SPARCLE project we measured frequency of participation of adolescents with cerebral palsy by administering the Questionnaire of Young People's Participation to 667 adolescents with cerebral palsy or their parents from nine European regions and to 4666 adolescents from the corresponding general populations.