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. PARTICIPANTS: Eighteen senior staff from YOD services and two dementia service commissioners took part. MEASUREMENTS: For commissioners, key interview topics were experiences of commissioning YOD services, perceived facilitators or barriers, and how future guidance should be structured for ease of use. For service providers, key topics explored experiences of delivering YOD services; what was achievable or challenging; how the service was funded; how it linked with broader provision for YOD in the area; and how guidance should be structured. RESULTS: Recorded interviews lasted 30-40 minutes. Seven key facilitators to the development and sustaining of YOD services were identified: having knowledgeable, committed local champions; involvement of people living with YOD and family supporters; initial delivery within existing resources; partnership working within and between sectors; having a reflective, supportive organizational culture; gathering evidence of impact; and having wider support and guidance. CONCLUSIONS: Improvements in provision for those with YOD and their families need to be built on understanding of service-level and interpersonal influences as well as on understanding of YOD itself. Our findings highlight a set of facilitators which need to be in place to establish and sustain high-quality YOD services that fit the local context.

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. This was achieved by establishing two project public and patient involvement (PPI) forums; a London PPI Forum and a Bradford-based local PPI Hub. This paper describes how the two groups were formed; the format of the meetings; and the key points learnt by the Project Team from involving people with dementia in all aspects of developing and delivering the Angela Project. Ultimately, the aim is to demonstrate to other researchers in the dementia field how the perspectives of those with a diagnosis can be included in research studies in an active and meaningful way.

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. A qualitative approach based on appreciative inquiry was used, posing open-ended questions about services experienced as helpful, as part of a national UK survey of people with YOD and carers. We used inductive thematic analysis to analyse the free-text responses. The resulting template was used as a basis for analysis of in-depth follow-up interviews, conducted to acquire greater in-depth understanding. Two hundred and thirty-three survey respondents provided 856 examples of helpful support. Twenty-four follow-up interviews were conducted (two with dyads, so 26 participants in total: 8 with people with YOD, 14 with carers, 2 with dyads). Twelve themes capturing the features of helpful services were clustered into three super-ordinate themes. 'Person-centredness' reflects micro levels of person-professional interaction (positive attitude, flexibility, collaborative, user-friendly materials, and in-person). 'Functional consistency' captures the meso level, demonstrating that services were helpful when organised consistently with needs (age-appropriate, holistic, responsive, and accessible). 'Organisational coherence', at the macro level, emphasises the need for service integration, specialist services and service continuity. Key conclusions are that the needs for flexibility and a collaborative stance may be particularly important for those under 65 years with dementia, who have full lives and are used to being in control; to be age-appropriate, helpful services need to provide activities and opportunities suitable for active middle-aged people; and to be holistic, services need to provide for needs associated with rare dementias and be family-centred. Specialist services need to be commissioned and arrangements need to be stable over time to enable continuity.

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. Information was extracted on key aspects of clinical and physical examination according to both a minimum and gold standard. RESULTS: Percentage compliance rates analysed by NHS site and statement, including compliance for site for minimum standard (11 statements), the additional 20 statements required for Gold standard, and the complete Gold standard set (31 statements) show that the additional 20 statements in the Gold standard had consistently higher compliance rates for every site compared to the minimum set. CONCLUSION: Findings confirmed variation in clinical practice and identified commonly missed items in examination and enquiry compared to expert consensus. This suggests that a template proforma, which contains the key indicators for comprehensive assessment of dementia in young adults according to a quality standard could help support clinicians to improve record keeping and reduce gaps in knowledge.

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. METHOD: Systematic searches of bibliographic databases were conducted involving self-reported experiences of diagnosis of YOD. Eight out of 47 papers identified were quality assessed using Walsh & Browne's criteria for methodological appraisal. RESULTS: The review emphasises that delays in diagnosis can often be attributed to (1) delays in accessing help, and (2) misattribution of symptoms by the clinician. The impact of diagnosis is influenced by the clinician's use of language; and reactions to diagnosis varied from feelings of reassurance (in that their symptoms are now explained), to shock and destabilisation. CONCLUSION: This review suggests that improving the recognition of presenting symptoms, reducing diagnostic errors, and identifying the emotional needs arising from diagnosis are required to improve the diagnostic experience for younger adults, and to promote future engagement with services.

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. Inductive thematic analysis was employed to explore the nature of positively experienced services provided for younger people with dementia, including analysis of what was provided by positively experienced services. RESULTS: Two hundred and thirty-three respondents reported 856 positive experiences of support. Data analysis yielded eight themes regarding the objectives of positive services: Specialist Advice and Information on Young Onset Dementia, Access to Age-appropriate Services, Interventions for Physical and Mental Health, Opportunities for Social Participation, Opportunities to Have a Voice, Enablement of Independence while Managing Risk, Enablement of Financial Stability, and Support Interventions for Family Relationships. CONCLUSION: The study findings (a) suggest that positive services may collectively create an enabling-protective circle that supports YPD to re-establish and maintain a positive identity in the face of young onset dementia, and (b) provide a basis from which future good practice can be developed.

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. RESULTS: Two hundred and thirty-three responses were analysed. Diagnosis was most commonly received through a Memory Clinic or Neurology. The type of service delivering diagnosis impacted on post-diagnostic care. Those diagnosed in specialist YOD services were more likely to receive support within the first 6 weeks and receive ongoing care in the service where they were diagnosed. Ongoing care management arrangements varied but generally care was lacking. Around 42% reported no follow-up during 6-weeks after diagnosis; over a third reported seeing no health professional within the previous 3 months; just over a third had a key worker and just under a third had a care plan. Satisfaction and quality of care were highest in specialist services. Almost 60% of family members spent over 5 h per day caring; median costs of health and social care, 3 months, 2018, were £394 (interquartile range £389 to 640). CONCLUSIONS: Variation across diagnostic and post-diagnostic care pathways for YOD leads to disparate experiences, with specialist young onset services being associated with better continuity, quality and satisfaction. More specialist services are needed so all with YOD can access age-appropriate care.

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. This study aims to improve the understanding of the personal experience of younger people undergoing investigation for dementia. METHODS: A modified Delphi approach was undertaken with 18 younger people with dementia and 18 supporters of people with young onset dementia. Questions were informed by a scoping review of the literature (O'Malley, M., Carter, J., Stamou, V., Lafontaine, J., & Parkes, J. (2019a). Receiving a diagnosis of young onset dementia: A scoping review of lived experiences. Ageing & Mental Health, 0(0), 1-12). Summary individual statements were refined over two rounds to a final list of 29 key statements. RESULTS: Twenty-seven of these statements were rated as absolutely essential or very important and included (1) for the general practitioner to identify dementia in younger people, (2) clinicians should be compassionate, empathic and respectful during the assessment and particularly sensitive when providing information about a diagnosis, and (3) remembering that receiving the diagnosis is a lot to absorb for a person with dementia and their supporter. Statistical analyses found no difference in the scoring patterns between younger people with dementia and supporters, suggesting similar shared experiences during the diagnostic process. CONCLUSION: Understanding the uniquely personal experience of young people going through the process of diagnosis for dementia is essential to provide person-centred, needs-led, and cost-effective services. Patient's values and experiences should be used to support and guide clinical decision-making.

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. RESULTS: 80% consensus was reached on 48 statements that were rated as "absolutely essential" or "very important" to a comprehensive assessment of dementia in a younger adult. In order to inform a subsequent audit of clinical records in which compliance with these statements was assessed, the statements were divided into a Minimum Standard, (consisting of the 15 statements voted by all experts as being "absolutely essential" or "very important") and a Gold Standard where 48 statements were voted by 80% of the experts as being "absolutely essential" or "very important". The experts' response rate across the three rounds was 91.3%. CONCLUSION: A Minimum Standard and Gold Standard have been created for the diagnostic workup of young onset dementia. The standards provide a clinically useful tool for decision-making, particularly for generalists and those with less experience in the field. The standards will be used to inform a UK case note audit of recently diagnosed patients with young onset dementia.

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. The study explored how to work collaboratively with people with dementia to develop their own research projects. Based on the findings, a qualitative participatory research model has been designed to support the active engagement of people with early-stage dementia in research. The project involved 12 people with early-stage dementia, who were divided into two groups (n = 6 in each group) and then trained in research skills. Each group was then supported to design, develop and undertake a group research project. This was one continuous process, and constantly took account of the individual competencies of each group member. Based upon the knowledge gained from the training in research skills and the participatory research project The Balanced Participation Model was developed. The model illustrates five phases in a participatory research process focusing on the considerations needed for participant recruitment, planning, training in research skills, the participatory research project, and the evaluation and dissemination of results. The core of the model highlights the importance of the researcher role in facilitating the collaboration.

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. A pilot study conducted by the school of teaching and communication (Voksenskolen For Undervisning og Kommunikation) offers evidence for the benefits of prolonged educational programmes for people with dementia in maintaining decision-making, cognitive function and social interactions, with limited evidence of the impact on memory. Further evidence is required to understand the impact of a person with dementia attending school as a student and to understand if this concept is transferrable to a different cultural setting.

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. No specific practice guidelines exist for diagnosis of young-onset dementia (YOD). AIMS: The review evaluates the current evidence about best practice in diagnosis to guide thorough assessment of the complex presentations of YOD with a view to upskilling professionals in the field. METHOD: A comprehensive search of the literature adopting a scoping review methodology was conducted regarding essential elements of diagnosis in YOD, over and above those in current diagnostic criteria for disease subtypes. This methodology was chosen because research in this area is sparse and not amenable to a traditional systematic review. RESULTS: The quality of evidence identified is variable with the majority provided from expert opinion and evidence is lacking on some topics. Evidence appears weighted towards diagnosis in frontotemporal dementia and its subtypes and young-onset Alzheimer's disease. CONCLUSIONS: The literature demonstrates that a clinically rigorous and systematic approach is necessary in order to avoid mis- or underdiagnosis for younger people. The advent of new disease-modifying treatments necessitates clinicians in the field to improve knowledge of new imaging techniques and genetics, with the goal of improving training and practice, and highlights the need for quality indicators and alignment of diagnostic procedures across clinical settings. DECLARATION OF INTEREST: None.

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. Whilst anecdotal reports also suggested the sessions had a positive impact on elevating mood over a sustained period of time. The pilot sessions are discussed in reference to the regular sessions run for people with dementia and comparisons drawn across the two approaches. Further evidence is required to understand the potential impact on participant's well-being from attending these sessions.

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. This article describes the process undertaken by the hospital audit team and the university academic team to develop the pilot project and support the students. Based on the positive evaluations, the university has extended the project to a second phase, incorporating two new partner organisations.

'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. We examined interview transcripts and field notes using thematic analysis, and collated routine outcome data to gauge whether transition had obvious positive or negative effects. Qualitative analysis indicated three major themes (information, transition, and behaviour) and five overlapping subthemes (positive information sharing and consultation, concerns and anxieties about lack of information, life change and opportunity, home and sense of belonging, and potential conflict). Outcome data indicated little obvious change between first and second interviews. Expressed concerns of patients about transition were largely about tangible and practical issues, including changes to rules, including smoking and prohibited items. The results highlight the need for the development of supportive patient-inclusion strategies, consistent and transparent communication processes, and a published timeframe during the planning and implementation phases of all types of transitional moves, including the side-to-side transfer of residents between accommodation buildings.

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. Currently, much of the preparation of patients or members of the public for research involvement tends to be aligned to specific projects; however, with the call for greater active and meaningful involvement of lay representatives in future national and international funding applications, there is clearly a growing need to 'train' sufficient numbers of confident and competent representatives to meet this growing demand. This paper describes the development of a specifically designed research awareness training programme and underpinning theoretical model, which has been specifically designed to support active and meaningful lay involvement in research, evaluations and audit projects. Developed over a four year period, the course is a culmination of learning extracted from a series of four completed research projects, which have incorporated an element of public and patient involvement (PPI) training in their overall design.

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. Domains and single items were analysed using respectively linear and logistic regression. Adolescents with cerebral palsy spent less time with friends and had less autonomy in their daily life than adolescents in the general populations. Adolescents with cerebral palsy participated much less in sport but played electronic games at least as often as adolescents in the general populations. Severity of motor and intellectual impairment had a significant impact on frequency of participation, the more severely impaired being more disadvantaged. Adolescents with an only slight impairment participated in some domains as often as adolescents in the general populations. Regional variation existed. For example adolescents with cerebral palsy in central Italy were most disadvantaged according to decisional autonomy, while adolescents with cerebral palsy in east Denmark and northern England played sports as often as their general populations. Participation is an important health outcome. Personal and environmental predictors of participation of adolescents with cerebral palsy need to be identified in order to design interventions directed to such predictors; and in order to inform the content of services.