Young-onset dementia and the need for specialist care: a national and international perspective

OBJECTIVES: Receiving a timely and accurate diagnosis and gaining access to age-appropriate support for younger people living with dementia (YPD) remains a challenge both in the UK and internationally because the focus of most dementia services is primarily upon the needs of older people. The political case to improve services for YPD depends upon the establishment of an understanding of the clinical symptoms, an unequivocal evidence base about need and an accurate evaluation of the size of the population affected. This short report assesses the evidence base from international studies regarding service design and delivery. The goal is to raise awareness, advance best practice and galvanise the international community to address the serious underfunding and underprovision of care for this marginalised group. CONCLUSION: The current evidence suggests that there are universal problems, regardless of continent, with delays to diagnosis and poor understanding of optimum models for service provision and long-term care

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

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

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

An audit of dementia education and training in UK health and social care: a comparison with national benchmark standards.

BACKGROUND: Despite people living with dementia representing a significant proportion of health and social care users, until recently in the United Kingdom (UK) there were no prescribed standards for dementia education and training. This audit sought to review the extent and nature of dementia education and training offered to health and social care staff in the UK against the standards described in the 2015 Dementia Training Standards Framework, which describes the knowledge and skills required of the UK dementia workforce. METHODS: This audit presents national data concerning the design, delivery, target audience, length, level, content, format of training, number of staff trained and frequency of delivery within existing dementia training programmes offered to health and social care staff. The Dementia Training Standards Framework was used as a reference for respondents to describe the subjects and learning outcomes associated with their training. RESULTS: The findings are presented from 614 respondents offering 386 training packages, which indicated variations in the extent and quality of training. Many training packages addressed the subjects of 'person-centred care', 'communication', 'interaction and behaviour in dementia care', and 'dementia awareness'. Few training packages addressed subjects concerning 'pharmacological interventions in dementia care', 'leadership' and 'end of life care'. Fewer than 40% of The Dementia Training Standards Framework learning outcomes targeted to staff with regular contact with people with dementia or in leadership roles were covered by the reported packages. However, for training targeted at increasing dementia awareness more than 70% of the learning outcomes identified in The Dementia Training Standards Framework were addressed. Many training packages are not of sufficient duration to derive impact; although the majority employed delivery methods likely to be effective. CONCLUSIONS: The development of new and existing training and education should take account of subjects that are currently underrepresented and ensure that training reflects the Training Standard Framework and evidence regarding best practice for delivery. Lessons regarding the limitations of training in the UK serve as a useful illustration of the challenge of implementing national dementia training standards; particularly for countries who are developing or have recently implemented national dementia strategies

The impact of dementia education and training on health and social care staff knowledge, attitudes and confidence: A cross-sectional study

Objectives The aim of this study was to establish the impact of dementia education and training on the knowledge, attitudes and confidence of health and social care staff. The study also aimed to identify the most effective features (content and pedagogical) of dementia education and training. Design Cross-sectional survey study. Data collection occurred in 2017. Settings Health and social care staff in the UK including acute care, mental health community care trusts, primary care and care homes. Participants All health and social care staff who had completed dementia education and training meeting the minimal standards as set by Health Education England, within the past 5 years were invited to participate in an online survey. A total of 668 health and social care staff provided informed consent and completed an online survey, and responses from 553 participants were included in this study. The majority of the respondents were of white British ethnicity (94.4%) and identified as women (88.4%). Outcomes Knowledge, attitude and confidence of health and social care staff. Results Hierarchical multiple regression analysis was conducted. Staff characteristics, education and training content variables and pedagogical factors were found to account for 29% of variance in staff confidence (F=4.13, p<0.001), 22% of variance in attitude (knowledge) (F=3.80, p<001), 18% of the variance in staff knowledge (F=2.77, p<0.01) and 14% of variance in staff comfort (attitude) (F=2.11, p<0.01). Conclusion The results suggest that dementia education and training has limited impact on health and social care staff learning outcomes. While training content variables were important when attempting to improve staff knowledge, more consideration should be given to pedagogical factors when training is aiming to improve staff attitude and confidence

Memory awareness profiles differentiate mild cognitive impairment from early-stage dementia: evidence from assessments of performance monitoring and evaluative judgement

Background: Measures of memory awareness based on evaluative judgement and performance monitoring are often regarded as equivalent, but the Levels of Awareness framework suggests they reflect different awareness phenomena. Examination of memory awareness among groups with differing degrees of impairment provides a test of this proposition. Method: Ninety-nine people with dementia (PwD), 30 people with mild cognitive impairment (PwMCI), and their relatives completed isomorphic performance monitoring and evaluative judgement measures of memory awareness and were followed up at 12 and (PwD only) 20 months. In addition to the resulting awareness indices, comparative accuracy scores were calculated using the relatives’ data to establish whether any inaccuracy was specific to self-ratings. Results: When making evaluative judgements about their memory in general, both PwD and PwMCI tended to overestimate their own functioning relative to informant ratings made by relatives. When monitoring performance on memory tests, PwD again overestimated performance relative to test scores, but PwMCI were much more accurate. Comparative accuracy scores indicated that, unlike PwD, PwMCI do not show a specific inaccuracy in self-related appraisals. Conclusions: The results support the proposition that awareness indices at the levels of evaluative judgement and performance monitoring should be regarded as reflecting distinct awareness phenomena