Dr Bridget Jones

Objectives: Younger people with dementia face significant challenges in gaining access to age- and needs-appropriate support. In this paper, we tell the story so far, of the ANGELA Research Project, which seeks to develop guidance to improve the ‘dementia journey’ for younger people with dementia and their families/supporters. Design: Our story is one of a research group aiming to conduct clinically relevant research to achieve positive changes for younger people with dementia. Our research journey will last 3 years and is now almost one year in. In this article, we aim to convey some of the decisions we have made to date, and what lies ahead for a successful implementation. Methods: So far, we have been forming as a research group and turning our initial ideas into plans that will work in the real world. Our methods for ensuring all elements of the project work well have involved internal and external aspects and processes. These have included involvement with and feedback from experts-by-experience and an advisory panel. Results: To date we have generated a protocol for all the key elements and have launched the Improving Support and Service Use Survey; a national survey gathering evidence from younger people with dementia and their supporters. In this article, we present how we aim to move forward to bring positive real-life changes to the lives of those affected by young onset dementia. Conclusions: There is a cautiously happy ending to this first phase, as we are now collecting data. However, the judgement of whether the Angela Project is a success overall will depend on whether it makes a difference at its conclusion to younger people with dementia and their supporters.

Evidence that interpersonal interactions and self-appraisal in social context are crucial in developing self-understanding raises concerns about how pupils with autism spectrum disorder make sense of themselves in school settings where many experience social marginalisation. Metasynthesis was used to systematically extract and integrate findings from qualitative studies examining the mainstream school experiences of these students. Synthesised findings identified three, intermeshing, aspects of experience which contribute to many pupils with autism spectrum disorder making sense of themselves as ‘different’ to typical peers in a negative way: difficulties linked to autism spectrum disorder; interpersonal relationships, particularly with peers; and accessibility of the school environment. Typical pupils’ attitudes and responses towards peers with autism spectrum disorder, unusual sensory reactions to the physical school environment and individual sense-making about the self are highlighted as key areas requiring further research and intervention to improve the experiences, self-esteem and well-being of pupils with autism spectrum disorder in inclusive settings and to inform educational policy and practice.

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.

RHAPSODY (Research to Assess Policies and Strategies for Dementia in the Young) is an EU Joint Programme - Neurodegenerative Disease Research (JPND) initiative that aims to improve information and support for families living with young onset dementia (YOD). Defined by symptom presentation before the age of 65 years, YOD is relatively rare and associated with diagnosis difficulties. Extensive family impact includes carer burden and stress, relationship disruptions and financial decline, all of which are exacerbated by a lack of age-appropriate services, support and information. This multidisciplinary collaboration across six European countries developed an internet-based e-learning program for families living with YOD. Information and policies related to YOD were analysed from on-line reviews completed in all countries. Carer perspectives on needs and experiences were explored using in-depth interviews in the Netherlands, followed by focus groups in England, France, Germany, Portugal and Sweden. An intervention based on an on-line support program was considered appropriate due to relatively low prevalence of YOD, georgraphical spread and mobility restrictions resulting from the condition. Findings from early research stages informed the design and content of the 7-Part program, which explained clinical background, psychosocial perspectives, family issues, legal aspects and the importance of carer support. Produced in English, German and French, the intervention was tested by volunteer family carers in England, Germany and France.

Background Recent policy initiatives seeking to address the workforce crisis in general practice have promoted greater multi-disciplinarity. Evidence is lacking on how changes in staffing and the relational climate in practice teams affect the experiences of staff and patients. Aim To synthesise evidence on how the composition of the practice workforce and team climate affect staff job satisfaction and burnout, and the processes and quality of care for patients. Design & setting This is a systematic literature review of international evidence. Method Four different searches were carried out using MEDLINE, Embase, Cochrane, CINAHL PsycINFO and Web of Science. Evidence from English language papers from 2012–2022 was identified, with no restriction on study design. PRISMA guidelines were followed and data were synthesised thematically. Results Eleven studies in primary healthcare settings were included, ten from US integrated healthcare systems, one from Canada. Findings indicate that when teams are understaffed and work environments are stressful, patient care and staff wellbeing suffer. However, a good relational climate can buffer against burnout and protect patient care quality in situations of high workload. Good team dynamics and stable team membership are important for patient care coordination and job satisfaction. Women physicians are at greater risk of burnout. Conclusion Evidence regarding team composition and team climate in relation to staff and patient outcomes in general practice remains limited. Challenges exist when drawing conclusions across different team compositions and definitions of team climate. Further research is needed to explore the conditions that generate a ‘good’ climate.

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.

Purpose The Covid-19 pandemic saw a dramatic rise in the number of people volunteering to support older people shielding at home. This study aimed to determine the processes by which volunteers were rapidly engaged in their communities and their impact on the older people who were supported and health and social care services. Design/methodology/approach The study took place in South East England between May–August 2020. Semi-structured interviews were conducted with 88 participants including health and social care practitioners (n = 12), leaders of voluntary, community and social enterprise (VCSE) organisations (n = 25), volunteers (n = 26) and older people receiving volunteer support (n = 25). Policy and procedure documents were sourced from the VCSE organisation leaders. Data were analysed thematically according to a framework method. Findings The authors identified key themes of People, Process and Planning. People: volunteers had a significant, positive impact on older people in their communities, with volunteers themselves, also benefiting. Process: VCSE organisations needed to work together and with health and care providers to avoid gaps and duplication of services. VCSE organisations were able to act quickly, by-passing many complex operational procedures. However, there was a need to ensure the safety of both volunteers and older people. Planning: Looking forward, there were concerns about the long-term funding of VCSE organisations and the availability of volunteers. Originality/value This study took place during the first wave of the pandemic, hence, it provides a snapshot of how voluntary organisations operated at this time and highlights the importance of integration with health and care statutory services.

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.

Background: Young Onset Dementia (YOD), defined by first symptoms of cognitive or behavioral decline occurring before the age of 65 years, is relatively rare compared to dementia of later onset, but it is associated with diagnostic difficulty and heavy burden on affected individuals and their informal carers. Existing health and social care structures rarely meet the needs of YOD patients. Internet-based interventions are a novel format of delivering health-related education, counseling and support to this vulnerable yet underserved group. Methods: The RHAPSODY (Research to Assess Policies and Strategies for Dementia in the Young) project is a European initiative to improve care for people with YOD by providing an internet-based information and skill-building program for family carers. The e-learning program focuses on managing problem behaviors, dealing with role change, obtaining support and looking after oneself. It will be evaluated in a pilot study in three countries using a randomized unblinded design with a wait-list control group. Participants will be informal carers of people with dementia in Alzheimer’s disease or behavioral-variant Frontotemporal degeneration with an onset before the age of 65 years. The primary outcome will be caregiving self-efficacy after 6 weeks of program use. As secondary outcomes caregivers’ stress and burden, carer health-related quality of life, caring-related knowledge, patient problem behaviors and user satisfaction will be assessed. Program utilization will be monitored and a health-economic evaluation will also be performed. Conclusions: The RHAPSODY project will add to the evidence on the potential and limitations of a conveniently accessible, user-friendly and comprehensive internet-based intervention as an alternative for traditional forms of counseling and support in healthcare, aiming to optimize care and support for people with YOD and their informal caregivers.

UK general practice is universally computerised, with computers used in the consulting room at the point of care. Practices use a range of different brands of computer system, which have developed organically to meet the needs of general practitioners and health service managers. Unified Modelling Language (UML) is a standard modelling and specification notation widely used in software engineering.

Objectives To identify information available in six European countries (England, France, Germany, Netherlands, Portugal, Sweden) that addresses the specific needs of people with young onset dementia (YOD) and their carers, and identify gaps. Methods Search of websites of organisations with potential interest in dementia. Narrative synthesis and comparative analysis. Results 21 sources of information were identified (Netherlands 6, England 6, France 3, Germany 2, Portugal 2, Sweden 2); 11 were from voluntary sector organisations. Sources dedicated to YOD were limited (4 websites, 4 books); all other YOD information was sub-entries in generic dementia sources, difficult to locate and with limited coverage of relevant topics. Gaps related to implications of living with YOD in Germany, Portugal and Sweden. Conclusion Availability of information varies among countries, some having no dedicated source and incomplete coverage of issues of importance to YOD. Practical implications Information is an important means of supporting carers; their needs change as the condition progresses. A comprehensive resource collating key information is needed so that the issues that differentiate the specific needs of people living with YOD from those of people with dementia in older age are available and easily located.

Objectives The European RHAPSODY project sought to develop and test an online information and support programme for caregivers of individuals diagnosed with young onset dementia. The objectives were to assess user acceptability and satisfaction with the programme and to test outcome measures for a larger effectiveness study. Design A pilot randomised controlled trial in England, France, and Germany was conducted with 61 caregivers for adults with young onset Alzheimer's disease or frontotemporal degeneration. Evaluations at baseline, week 6, and week 12 assessed user acceptability and satisfaction. Use of the programme was measured from online back‐end data. Qualitative feedback on user experiences was collected via semi‐structured interviews. Measures of caregiver well‐being (self‐efficacy, stress, burden, frequency of patient symptoms, and caregiver reactions) were explored for use in a subsequent trial. Results Participants logged in online on average once a week over a 6‐week period, consulting approximately 31% of programme content. Seventy percent of participants described the programme as useful and easy to use. Eighty‐five percent expressed intent to use the resource in the future. Reductions in reported levels of stress and caregivers' negative reactions to memory symptoms were observed following use of the programme. Conclusions Results indicated that the RHAPSODY programme was acceptable and useful to caregivers. The programme may be complementary to existing services in responding to the specific needs of families affected by young onset dementia. Distribution of the programme is underway in England, France, Germany, and Portugal.

Background: Recent policy initiatives seeking to address the workforce crisis in general practice have promoted greater multidisciplinarity. Evidence is lacking on how changes in staffing and the relational climate in practice teams affect the experiences of staff and patients. Aim: To synthesise evidence on how the composition of the practice workforce and team climate affect staff job satisfaction and burnout, and the processes and quality of care for patients. Method: Four different searches were carried out between December 2021 and March 2022 using MEDLINE, Embase, Cochrane, CINAHL PsycINFO and Web of Science. PRISMA guidelines were followed and data were synthesised thematically. Results: Eleven studies set in primary care were included, 10 from US integrated healthcare systems, one from Canada. Findings indicate that when teams are understaffed and work environments are stressful, patient care and staff wellbeing suffer. However, a good relational climate can buffer against burnout and protect patient care. Good team dynamics and team cohesion have a greater impact on job satisfaction and patient care coordination than team composition; stable team membership is also important. Better patient experiences are associated with female physicians. However, these same physicians are at higher risk of burnout. Conclusion: Evidence regarding team composition and team climate in relation to staff and patient outcomes remains limited. Challenges exist when drawing conclusions across different team compositions and differing definitions of team climate. Future research may benefit from exploring the conditions that generate a productive team climate.

Increased awareness of dementia is associated with its rising prevalence in an ageing population. Young-onset dementia (YOD) is diagnosed when symptoms occur under the age of 65. Although YOD is less common, with an estimated occurrence of 100 people aged 45-64 per 100,000 population, it can have a devastating effect on family members, who face a lack of age-appropriate information and support. This article has two objectives: to describe an international multidisciplinary research project to develop and test an online resource for carers of people diagnosed with YOD and to reflect on the experience of working on the project from the perspective of an early career researcher. The author describes how the international nature of the study, the multidisciplinary context and liaison with participants have helped to consolidate the author’s learning and professional development.