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.

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.

Public health guidance to facilitate timely diagnosis of dementia: ALzheimer's COoperative Valuation in Europe recommendations.

OBJECTIVE: ALzheimer's COoperative Valuation in Europe (ALCOVE) was a Joint Action co-financed by the European Commission to produce a set of evidence-based recommendations for policymakers on dementia. This paper reports on timely diagnosis. METHODS: Evidence was reviewed from scientific, policy and qualitative research. An online questionnaire was completed by experts from 24 European Union countries detailing current practice. An iterative process with people with dementia, family carers and professionals was utilised to develop recommendations. RESULTS: Advances in the technical aspects of diagnosis have changed what is understood by early diagnosis. Although research into preclinical stages is crucial, diagnosing at these very earliest stages is not recommended as regular practice. On balance, it is suggested that citizens should have access to accurate diagnosis at a time in the disease process when it can be of most benefit to them. The term timely diagnosis is used to reflect this. The diagnosis can help citizens and their families make sense of what is happening and make lifestyle changes and plans for the future. The central principles identified to maximise benefit and to reduce harm associated with diagnosis at an earlier stage included reducing stigma about dementia; respecting the rights of the individual; recognising that how the diagnosis is given will impact on subsequent adjustment and that post diagnostic support are required for the person and their family. Detailed recommendations are provided for timely detection, the diagnostic process, complex diagnoses, response to early cognitive changes and workforce. CONCLUSIONS: The recommendations can be utilised at a local, national and European level to benchmark progress.

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.

Understanding dementia amongst people in minority ethnic and cultural groups.

AIM: This paper is a report of a study to explore perceptions of ageing, dementia and ageing-associated mental health difficulties amongst British people of Punjabi Indian origin. BACKGROUND: People from ethnic minorities are often under-represented in mental health services. Contributing factors may include lack of knowledge of dementia in these communities, lack of detection in primary care, expectations of family care and lack of appropriate services. For this to change, greater knowledge is needed about awareness and conceptualization of dementia in minority ethnic communities. METHOD: A focus-group study was conducted between 2001 and 2003 with 49 English-, Hindi- and Punjabi-speaking British South Asians, aged 17-61 years. Views of ageing and ageing-associated difficulties were explored in initial groups. In a second set of groups, vignettes were used for more specific exploration of awareness and understanding of dementia. Data were subjected to thematic analysis. FINDINGS: Ageing was seen as a time of withdrawal and isolation, and problems as physical or emotional; cognitive impairment was seldom mentioned. There was an implication that symptoms of dementia partly resulted from lack of effort by the person themselves and possibly from lack of family care. Therefore people should overcome their own problems and family action might be part of the solution. There was a sense of stigma and a lack of knowledge about mental illness and services, alongside disillusionment with doctors and exclusion from services. CONCLUSION: Health promotion and health interventions delivered with respect for the cultural context are needed, as well as education of healthcare professionals about South Asian conceptualizations of dementia.