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

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). Aim 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 fronto-temporal dementia (FTD) and its subtypes and young onset Alzheimer’s disease (AD). Conclusion The literature demonstrates that a clinically rigorous and systematic approach is necessary in order to avoid mis- or under-diagnosis 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

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

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. 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. 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. 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

Living with young onset dementia and actively shaping dementia research – The Angela Project.

Younger people living with dementia have been actively engaged in challenging society’s attitude to dementia. Despite their increased visibility though, there are substantial obstacles for younger people living with dementia in receiving a timely and accurate diagnosis and gaining access to appropriate support. Keith Oliver has been an active member of the Patient and Public Involvement Forum for the Angela Project, an Alzheimer’s Society funded project aimed at improving accuracy of diagnosis and post-diagnostic support for younger people living with dementia. In this article, Keith shares his experience of receiving a diagnosis of dementia and how he has since been involved in research projects, highlighting the benefits of Patient and Public Involvement for both the person living with dementia, as well as for the research group. Keith concludes by encouraging better Patient and Public Involvement practice in all projects, emphasising the benefits to all those involved in research

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

The status of current clinical practice in diagnosis of young onset dementia in England: Findings from The Angela Project

Background The presentation of dementia in young people is complex and challenging, often resulting in delays in receiving a confirmed diagnosis and appropriate support. A recent Delphi consensus has derived minimum and gold standards for the diagnostic workup that international expert clinicians consider best practice. This presentation will review the results of a large case note audit that assessed compliance with these standards in current UK clinical practice. Method 403 patient records of young people who received a diagnosis of dementia in the last 5 years were audited according to our minimum and gold standards. Records were obtained from memory services within eight different National Health Service locations from across England. Result We found significant differences between the sites in meeting the standards, though all sites had median scores that were below 50% compliance for both the minimum and gold standard. This suggests that current UK assessments fail to reach an acceptable standard. Conclusion Further consultation with clinicians and young people with dementia is necessary to understand local impediments to meeting an acceptable standard and to identify interventions that can lead to improvement

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