An evaluation of a Singing for the Brain pilot with people with a learning disability and memory problems or a dementia

This paper presents the findings from a pilot project introducing Singing for the Brain into care centres with people with a learning disability and a form of dementia or memory problem. Through participant observations, patient and staff feedback, there was strong support for the use of Singing for the Brain with this client group, with articipants reporting high levels of enjoyment and engagement in the sessions. The potential for these sessions to support communication, memory, social engagement and choice was reported by staff and articipants. Whilst anecdotal reports also suggested the sessions had a positive impact on elevating mood over a sustained period of time. The pilot sessions are discussed in reference to the regular sessions run for people with dementia and comparisons drawn across the two approaches. Further evidence is required to understand the potential impact on participant’s well-being from attending these sessions

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

A visual and creative approach to exploring people with dementia’s experiences of being students at a school in Denmark

In dementia research, there is limited knowledge about how people with dementia experience their daily life including how they experience the services they attend. This means a lack of knowledge about how people with dementia judge the quality of services provided for them. In this study visual and creative methods were used to understand the experience of people with early stage dementia who attend an adult school, Voksenskolen for Undervisning og Kommunikation (VUK) in Denmark. The study explored the students’ experience of being a student at VUK and what it means to engage in life-long learning. Alongside the aim to evaluate the service provided for them, seen from their perspective. Photo-elicitation was used, with cameras provided to each student, who took photographs of their school and home life. Students’ photographs were used to support focus group discussions, with the images integral to the process of talking about and recalling stories. Ten students were recruited to participate in four weekly sessions. Two groups were run with five students in each group. Each session was video recorded, these sessions were then transcribed and analysed using Braun and Clarke’s thematic analysis. Visual images were found to support the students’ memory of current experiences and prompted reminiscences about the past, leading to rich descriptions about being a student at VUK and their experiences of living with dementia. Being able to attend VUK was found to be important for these students with dementia, providing them with a sense of purpose, a way to support their cognitive function and also to develop new friendships. The method provided a way for people with dementia to be active in the research process and provide their perspective about a novel service, which promotes an ethos of learning and development

The development of a dementia awareness training package in the Thames Valley region: an evidence based approach

Introduction: Health Education England’s (2014) mandate stipulated that 250,000 healthcare staff required Tier 1 level dementia awareness training. In response, Health Education Thames Valley in the UK commissioned the Dementia Academic Action Group. This consortium, of University of Bedfordshire, Oxford Brookes University, University of Northampton and University of West London, reviewed dementia awareness training, identifying gaps, best practice and barriers to accessing training. This work led to the development of a training model for delivery to health & social care sectors.Method: A scoping review was undertaken to achieve a comprehensive understanding of the range of dementia awareness training currently being delivered. A mixed method approach was employed, consisting of a literature review; review of Tier 1 dementia awareness educational resources (59 training documents); stakeholder interviews (n=32); carer focus groups (n=2) and online staff survey (n=74).Results: The literature and scoping reviews and stakeholder interviews found a wide range of training available. Stakeholders reported this variety made it challenging to confidently identify training which met staff and organisational needs. The review of dementia training identified that most resources included information on signs/symptoms, types/causes, supporting people with dementia and person centred care. Information on policy, legislation and end of life care were less evident. The literature review identified ethnic diversity, learning disability and young onset dementia as gaps in training provision. The stakeholder, staff and carer findings highlighted theneed for greater information on: developing personal communication strategies; information about dementia and how to develop activities to support positive engagement. Finally, staff and stakeholders considered benefits of different training delivery styles, reporting a preference for a blended learning approach, stating this was more suited to developing dementia knowledge and skills, as opposed to a solely online format.Conclusion: Based on the findings, it was identified that there is an apparent need to develop a standard training package, which should be person centred, support enhanced communication approaches and increase understanding of coping with a diagnosis of dementia. This could prove attractive to the health & social care workforce in the Thames Valley Region, across the UK, and to the international arena

Current UK clinical practice in diagnosing dementia in younger adults: compliance with quality indicators in electronic health records from mental health trusts

To examine current UK practice in diagnosis of patients under 65 with young onset dementia, within 5 years of date of diagnosis, identified from electronic health records of 8 NHS mental health trusts. Patients diagnosed with young onset dementia were assembled from the UK-Clinical Record Interactive System, (UK-CRIS) using diagnosis of dementia as the index date. A pre-designed proforma, derived by international Delphi consensus from experts in the field in previous work, was used to assess components of the diagnostic assessment in 402 electronic health records across 8 NHS sites. Information was extracted on key aspects of clinical and physical examination according to both a minimum and gold standard. Percentage compliance rates analysed by NHS site and statement, including compliance for site for minimum standard (11 statements), the additional 20 statements required for Gold standard, and the complete Gold standard set (31 statements) show that the additional 20 statements in the Gold standard had consistently higher compliance rates for every site compared to the minimum set. Findings confirmed variation in clinical practice and identified commonly missed items in examination and enquiry compared to expert consensus. This suggests that a template proforma, which contains the key indicators for comprehensive assessment of dementia in young adults according to a quality standard could help support clinicians to improve record keeping and reduce gaps in knowledge

The design, delivery and impact of a Tier 1 Dementia Awareness training package delivered in the Thames Valley Region in England, UK

Objectives: As part of Health Education England’s (HEE) response to the 2014 Mandate, Health Education England Thames Valley (HEETV) commissioned four universities to undertake a multi-phase project. The University of West London, Oxford Brookes University, University of Bedfordshire and University of Northampton became partners in the Dementia Academic Action Group (DAAG). Phase 1 of the project consisted of a Scoping Review, reported through a poster at the 2016 ADI. This poster will focus on Phase 2 (design and delivery of the training package) and Phase 3 (evaluation of the impact of training). The DAAG has developed evidence based and quality assured training package based on recognised National UK standards such as Skills for Health Dementia Training Standards (2015). It has also been validated by the Alzheimer Society as meeting the standards for Dementia Friend’s training, and participants are eligible to register as a Dementia Friend on completion of the training. The package is mostly delivered in a 2 hour session, but can also be taken through 8 separate units of learning. A total of 1471 people attended the standard 2 hour training, delivered through 84 different sessions in 34 different venues across the region. Attendees represented a wide range of professionals, from porters, cooks and cleaners to nurses, pharmacists, therapists and doctors. Some sessions were uni- professional but, most had a professionally mixed audience. The number of trainees per session varied from 3 to 112. Subsequent to the training, quantitative and qualitative data was collected through evaluation questionnaires, combined with follow up online questionnaires and individual face to face or telephone interviews 6 weeks after the event. Over 85% of respondents to the follow up questionnaires and interviews reported improved skills, attitudes and confidence in working with people with dementia following the training. 70.2% indicated that they had been able to transfer some of what they had learned in the training to practice. Sustainability was ensured through the development of a trainers guide and ‘train the trainers’ events. The Tier 1 dementia awareness training package is now available for free from the Health Education England website, and it’s ongoing use is subject to continuing evaluation

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

The status of current clinical practice in diagnosis of young onset dementia in England: Findings from The Angela Project

Background The presentation of dementia in young people is complex and challenging, often resulting in delays in receiving a confirmed diagnosis and appropriate support. A recent Delphi consensus has derived minimum and gold standards for the diagnostic workup that international expert clinicians consider best practice. This presentation will review the results of a large case note audit that assessed compliance with these standards in current UK clinical practice. Method 403 patient records of young people who received a diagnosis of dementia in the last 5 years were audited according to our minimum and gold standards. Records were obtained from memory services within eight different National Health Service locations from across England. Result We found significant differences between the sites in meeting the standards, though all sites had median scores that were below 50% compliance for both the minimum and gold standard. This suggests that current UK assessments fail to reach an acceptable standard. Conclusion Further consultation with clinicians and young people with dementia is necessary to understand local impediments to meeting an acceptable standard and to identify interventions that can lead to improvement