International differences in best practice for young onset dementia

The focus of national and international health and social care policies on the impact of young onset dementia has increased during recent decades. National dementia strategies have aimed to recognise the distinct needs of younger people with dementia and their families and promote evidence-based age-appropriate services via recommendations of good practice. This chapter provides an overview of the different international approaches to the provision of post-diagnostic support, along with examples of good practice across Europe and Australia. Despite the remaining gaps in research and practice, current evidence suggests that significant progress has been made towards establishing the basic principles of good practice in young onset dementia and the fundamental attributes of age-appropriate needs-led services. The increasing pockets of good practice around the world allow for an optimistic view regarding more effective services for young onset dementia in the future

Community support groups for men living with depression: barriers and facilitators in access and engagement with services.

Approximately 10% of the general population will experience depression in adulthood. Concerningly, men with depression are more likely to take their own lives and less likely to seek professional support. Given men’s preference for community-based support, this study employed interviews with service providers to explore the barriers and facilitators involved in community support groups for men living with depression. Nine interviews were conducted with service providers across Greater Manchester, UK. Data were analyzed via thematic analysis and revealed four themes: ‘Mental Health as a Weakness,’ ‘Empowering Practice,’ ‘Trust and Security’ and ‘Group Support as a Gateway to Treatment.’ Men living with depression experience identity conflict, which reduces help-seeking. Community support groups facilitate access and engagement with treatment by providing safe spaces to resolve internal conflicts. Gender-specific group support may facilitate access to support and address long waiting lists of statutory services. Implications for practice, policy and future research are discussed

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. We gathered free-text responses on positive service experiences via a UK cross-sectional survey. Inductive thematic analysis was used to identify the objectives of positive services and the needs these met. Follow-up interviews enabled in-depth insights from people with diverse diagnoses, ages and social situations. These were analysed using a template drawn from the survey. The 233 survey respondents gave 856 examples of positive support. Analysis of 24 follow-up interviews led to 16 themes clustered under three superordinate themes: ‘maintaining autonomy’, ‘being myself’ and ‘togetherness’. We found that positive services address the disruptions to sense of agency, selfhood and meaningful relationships that are experienced by those with young onset dementia. The study provides an in-depth understanding of the needs met by positive services for younger people with dementia. Our nuanced findings on good practice can inform age-specific guidelines for young onset dementia and indicate how personalisation can work in practice to help people with young onset dementia to maintain identity, autonomy and connections

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

“Friendly, Local and Welcoming” - Evaluation of a Community Mental Health Early Intervention Service

Purpose: Half of adulthood mental health challenges begin by the age of 14-years-old, making the need for early-intervention clear. This study aims to evaluate a new service model that promotes early-intervention through a community based low-intensity Hub. Design/methodology/approach: Clinical data from 2,384 young people were analysed through within-group, pre- and post-comparisons and qualitative survey, and interview data was analysed through content analysis. Findings: Overall, participants reported that they were highly satisfied with the Hub and the low-intensity brief interventions met their needs. Participants reported that learning new skills, having a place to talk and positive therapeutic relationships were beneficial. The Hub appeared to be less successful for young people with complex mental health difficulties. As a service, the adoption of the Hub model reduced waiting list times by more than half. Research limitations/implications: The quantitative data demonstrated that engaging with the Hub reduced symptoms of psychological distress. Qualitative analyses suggest that access to local, community, welcoming and “less clinical” support was beneficial, and the type of brief interventions offered was less important than therapeutic relationships. Originality/value: This is the first study of a novel “Hub” model for low-intensity brief interventions in a socio-economically deprived area of England. Local knowledge, community integrated support, therapeutic relationships and a welcoming environment were viewed as more beneficial than the type of brief interventions offered. Consequently, community spaces can be created to be therapeutic and beneficial for mental health outside of a traditional conceptualisation of clinical support