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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: a scoping review of lived experiences Objectives: The personal experience of receiving a diagnosis of young onset dementia (YOD) is often overlooked in a complex assessment process which can require substantial investigation. To understand the lived experiences of younger people undergoing assessment and receiving a diagnosis of dementia, we undertook a thematic synthesis of qualitative studies published until November 2018. The aim of this review was to inform a Delphi study with younger people diagnosed with dementia to learn how diagnostic process could be improved, and to identify the strengths and weaknesses of current approaches and help educate professionals concerning key issues. Method: Systematic searches of appropriate bibliographic databases were conducted to collate literature involving self-reported experiences of diagnosis of YOD. Eight out of 47 initially-identified papers satisfied our search term criteria, and all papers were quality assessed using Walsh & Browne's criteria for methodological appraisal. Results: The review of the literature emphasises that delays in diagnosis can often be attributed to (1) delays in accessing help by the younger person, and (2) misattribution of symptoms by the clinician. The impact of diagnosis is influenced by the language used by the clinician, and the younger people diagnosed with dementia and their families' reactions to the diagnosis vary from feelings of reassurance (in that their symptoms are now explained), to shock and destabilisation. Conclusion: Understanding the perspective of a younger person undergoing assessment for dementia is important both in terms of promoting future engagement with services and in designing and evaluating interventions to improve the diagnostic process. 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.

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.