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

The experiences, needs and outcomes for carers of people with dementia: Literature Review

This literature review was conducted as part of my role at the Association of Dementia Studies, University of Worcester.RSAS is developing new and innovative ways of supporting carers, people living with dementia and their families. The charity aims to enhance the health and well-being of carers through providing services that increase their knowledge and understanding of dementia, further enhances their caring skills and provides supportive and therapeutic services to them. This literature review provides an up-to-date review concerning the evidence in relation to the following questions: 1 What is the experience of caregiving for a person living with dementia, and in what context does caregiving take place? 2 What implications does caregiving have for the person/family member involved in caregiving and the person with dementia? 3 What is currently known about the factors that protect or increase the risk of poor outcomes in caregiving? 4 What evidence is there for interventions to support family caregiving and reduce the risk of poor outcomes and how is this delivered in relation to: a Information and Education b Multi-component, psycho-educational interventions c Psychological Interventions d Peer support and other social interventions e Assistive technology and new media 5 What form of service provision is required to support family caregivers? This will include consideration of such issues as: a How might a service be delivered? b What factors will influence delivery including location, design, accessibility and flexibility? 6 Who will the service be for and how can family caregivers be supported to engage with the service

Living with young onset dementia and actively shaping dementia research - The Angela Project

Younger people living with dementia have been actively engaged in challenging society’s attitude to dementia. Despite their increased visibility though, there are substantial obstacles for younger people living with dementia in receiving a timely and accurate diagnosis and gaining access to appropriate support. Keith Oliver has been an active member of the Patient and Public Involvement Forum for the Angela Project, an Alzheimer’s Society funded project aimed at improving accuracy of diagnosis and post-diagnostic support for younger people living with dementia. In this article, Keith shares his experience of receiving a diagnosis of dementia and how he has since been involved in research projects, highlighting the benefits of Patient and Public Involvement for both the person living with dementia, as well as for the research group. Keith concludes by encouraging better Patient and Public Involvement practice in all projects, emphasising the benefits to all those involved in research

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

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

Two important exceptions to the relationship between energy density and fat content: food with reduced-fat claims and high-fat vegetable-based dishes

Objective: To test the hypothesis that many foods with reduced-fat (RF) claims are relatively energy-dense and that high-fat (HF) vegetable-based dishes are relatively energy-dilute.Design: Nutrient data were collected from available foods in Melbourne supermarkets that had an RF claim and a full-fat (FF) equivalent. Nutrient analyses were also conducted on recipes for HF vegetable-based dishes that had more than 30% energy from fat but less than 10% from saturated fat. The dietary intake data (beverages removed) from the 1995 National Nutrition Survey were used for the reference relationships between energy density (ED) and percentage energy as fat and carbohydrate and percentage of water by weight.Statistics: Linear regression modelled relationships of macronutrients and ED. Paired t-tests compared observed and predicted reductions in the ED of RF foods compared with FF equivalents.Results: Both FF and RF foods were more energy-dense than the Australian diet and the HF vegetable-based dishes were less energy-dense. The Australian diet showed significant relationships with ED, which were positive for percentage energy as fat and negative for percentage energy as carbohydrate. There were no such relationships for the products with RF claims or for the HF vegetable-based dishes.Conclusion: While, overall, a reduced-fat diet is relatively energy-dilute and is likely to protect against weight gain, there appear to be two important exceptions. A high intake of products with RF claims could lead to a relatively energy-dense diet and thus promote weight gain. Alternatively, a high intake of vegetable-based foods, even with substantial added fat, could reduce ED and protect against weight gain.<br /

Face-to-face: Social work and evil

The concept of evil continues to feature in public discourses and has been reinvigorated in some academic disciplines and caring professions. This article navigates social workers through the controversy surrounding evil so that they are better equipped to acknowledge, reframe or repudiate attributions of evil in respect of themselves, their service users or the societal contexts impinging upon both. A tour of the landscape of evil brings us face-to-face with moral, administrative, societal and metaphysical evils, although it terminates in an exhortation to cultivate a more metaphorical language. The implications for social work ethics, practice and education are also 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

Passive acoustic bubble sizing in sparged systems

Passive acoustic bubble sizing was investigated in both controlled tests and in a stirred, sparged tank typical of the biotechnology or minerals processing industries. Acoustic techniques have promise for industrial systems where other bubble analysis methods are impractical. Acoustic signals were studied for bubbles precisely formed at higher airflow rates. Acoustic pulses varied with bubble production rate as well as with bubble size. A technique of windowing pulses is proposed. Two alternative versions of this windowing technique were applied to a stirred, sparged tank, giving good agreement. It was shown that, in some cases, it may also be possible to acoustically estimate the spatial distribution of void fraction

The pathogenesis of Charcot neuroarthropathy: current concepts

The pathogenesis of Charcot neuroarthropathy (CN) has been poorly understood by clinicians and scientists alike. Current researchers have made progress toward understanding the cause of CN and possible treatment options. The authors review the current literature on the pathogenesis of this debilitating disorder and attempt to explain the roles of inflammation, bone metabolism, and advanced glycation end products