Together yet apart: Rethinking creativity and relational dementia care during the Covid-19 pandemic.

Culture Box was a creative project that responded to deprivation and distress experienced by those with dementia in care homes during the COVID-19 pandemic. Remote and digital creative activities were designed and delivered as 'Culture Boxes' to care homes, aiming to alleviate social isolation and loneliness for people with dementia. Eighty-eight people with dementia and 33 care staff from 33 care homes across England were recruited to the study, with 68 people with dementia and 28 staff completing the study 12 months later. Participatory Action Research combining mixed methods was used to evaluate the project. Baseline and follow-up surveys and dialogic interviews at 3 time points during the study collected quantitative and qualitative data and were analysed descriptively and via inductive thematic analysis respectively. Qualitative findings indicated that the project activities facilitated relational care through creative experiences characterised by sharing, building relationships, and developing a sense of community. Social health was promoted via participation in social activities and fostering independence. Future studies should further explore the utility of creative practices to develop relational care, to support care staff, and to maximise wellbeing benefits for those living with dementia.

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.

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.

Representations of the experiences of people with dementia in Irish newspapers.

The aims of the study were to explore what personal narratives in Irish broadsheet and tabloid newspapers reveal about the lived experience of people with dementia. The sample included twenty narratives collected from five Irish newspapers between 2011 and 2017 inclusively. The relative absence of narratives of people with dementia in Irish newspapers is shown as only twelve of the twenty narratives contained the voice of the person with dementia themselves. Inductive analysis and thematic analysis generated four main themes with a total of thirteen subthemes. The main themes are: (1) Dementia as a personal journey, (2) stereotypes and stigma, (3) barriers and (4) awareness. This study highlights the under-representation of personal narratives of people with dementia in Irish newspapers which is seen as a contributing factor in the lack of understanding and awareness of dementia in society in general. Exploring mediated representations of the lived experience of people with dementia through personal narratives provides insight into the naturalised discourses of dementia which impact on people's lived experiences. (172).

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

OBJECTIVES: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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.

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.

The nature of positive post-diagnostic support as experienced by people with young onset dementia.

OBJECTIVES: Studies on service needs of people with young onset dementia have taken a problem-oriented approach with resulting recommendations focusing on reducing service shortcomings. This study aimed to build on 'what works' in real-life practice by exploring the nature of post-diagnostic support services that were perceived positively by younger people with dementia and carers. METHOD: Positive examples of support were gathered between August 2017 and September 2018, via a national survey. Inductive thematic analysis was employed to explore the nature of positively experienced services provided for younger people with dementia, including analysis of what was provided by positively experienced services. RESULTS: Two hundred and thirty-three respondents reported 856 positive experiences of support. Data analysis yielded eight themes regarding the objectives of positive services: Specialist Advice and Information on Young Onset Dementia, Access to Age-appropriate Services, Interventions for Physical and Mental Health, Opportunities for Social Participation, Opportunities to Have a Voice, Enablement of Independence while Managing Risk, Enablement of Financial Stability, and Support Interventions for Family Relationships. CONCLUSION: The study findings (a) suggest that positive services may collectively create an enabling-protective circle that supports YPD to re-establish and maintain a positive identity in the face of young onset dementia, and (b) provide a basis from which future good practice can be developed.

Receiving a diagnosis of young onset dementia: a scoping review of lived experiences.

OBJECTIVES: Personal experiences of receiving a diagnosis of young onset dementia (YOD) are often overlooked in a complex assessment process requiring substantial investigation. A thematic synthesis of published until November 2018 qualitative studies was completed to understand the lived experiences of younger people. This informed a Delphi study to learn how diagnostic processes could be improved, identify the strengths and weaknesses of current approaches, and help educate professionals concerning key issues. METHOD: Systematic searches of bibliographic databases were conducted involving self-reported experiences of diagnosis of YOD. Eight out of 47 papers identified were quality assessed using Walsh & Browne's criteria for methodological appraisal. RESULTS: The review emphasises that delays in diagnosis can often be attributed to (1) delays in accessing help, and (2) misattribution of symptoms by the clinician. The impact of diagnosis is influenced by the clinician's use of language; and reactions to diagnosis varied from feelings of reassurance (in that their symptoms are now explained), to shock and destabilisation. CONCLUSION: 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, and to promote future engagement with services.

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.

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.

International consensus on quality indicators for comprehensive assessment of dementia in young adults using a modified e-Delphi approach.

OBJECTIVE: To develop guidance for clinicians about essential elements that can support clinical decision-making in the diagnostic workup of young onset dementia. METHODS/DESIGN: Three iterations of a modified e-Delphi consensus survey comprising 23 international expert clinicians specialising in diagnosis of young onset dementia. OUTCOME MEASURES: A priori consensus was pre-defined as 80% of experts ranking statements in the upper threshold on a seven-point Likert scale that ranged from "not important at all" to "absolutely essential" to diagnosis. RESULTS: 80% consensus was reached on 48 statements that were rated as "absolutely essential" or "very important" to a comprehensive assessment of dementia in a younger adult. In order to inform a subsequent audit of clinical records in which compliance with these statements was assessed, the statements were divided into a Minimum Standard, (consisting of the 15 statements voted by all experts as being "absolutely essential" or "very important") and a Gold Standard where 48 statements were voted by 80% of the experts as being "absolutely essential" or "very important". The experts' response rate across the three rounds was 91.3%. CONCLUSION: A Minimum Standard and Gold Standard have been created for the diagnostic workup of young onset dementia. The standards provide a clinically useful tool for decision-making, particularly for generalists and those with less experience in the field. The standards will be used to inform a UK case note audit of recently diagnosed patients with young onset dementia.

Language assessment of monolingual and multilingual children using non-word and sentence repetition tasks.

The number of children speaking more than one language as well as the number of languages spoken in Ireland has increased significantly posing a problem for timely identification of children with language disorder. The current study aims to profile performance of monolingual and multilingual children on language processing tasks: non-word repetition (NWR) and sentence repetition (SR). We used: (1) Crosslinguistic (CL) and English Language-Specific (LS) NWR and (2) SR in English, Polish and Russian. Children's socioeconomic status, language emergence, the age of exposure (AoE) to English and the percentage of English spoken at home were recorded. The study included 88 children age 5-8 attending a school in a disadvantaged area.CL and LS NWR yielded similar distribution of scores for monolinguals and multilinguals. The tasks identified small number of children who performed significantly lower than the mean while there were no significant differences between the groups. In English SR, monolinguals significantly outperformed multilinguals. Comparison of SR in English and Polish/Russian indicated that some children showed balanced performance in both of their languages while others showed marked differences performing better in either Polish/Russian or English depending on their AoE to English and percentage of English spoken at home.The pilot study suggests that CL-NWR is a promising screening tool for identifying monolingual and multilingual children with language disorder while SR provides more detailed information on children's language performance relative to their language exposure. SR task is recommended to be used only if comparable tasks are available in all of children's languages.

Young-onset dementia: scoping review of key pointers to diagnostic accuracy.

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.

How do we get there? Effects of cognitive aging on route memory.

Research into the effects of cognitive aging on route navigation usually focuses on differences in learning performance. In contrast, we investigated age-related differences in route knowledge after successful route learning. One young and two groups of older adults categorized using different cut-off scores on the Montreal Cognitive Assessment (MoCA), were trained until they could correctly recall short routes. During the test phase, they were asked to recall the sequence in which landmarks were encountered (Landmark Sequence Task), the sequence of turns (Direction Sequence Task), the direction of turn at each landmark (Landmark Direction Task), and to identify the learned routes from a map perspective (Perspective Taking Task). Comparing the young participant group with the older group that scored high on the MoCA, we found effects of typical aging in learning performance and in the Direction Sequence Task. Comparing the two older groups, we found effects of early signs of atypical aging in the Landmark Direction and the Perspective Taking Tasks. We found no differences between groups in the Landmark Sequence Task. Given that participants were able to recall routes after training, these results suggest that typical and early signs of atypical aging result in differential memory deficits for aspects of route knowledge.

Sympathy for the devil: a conservation strategy for devil and manta rays.

BACKGROUND: International trade for luxury products, medicines, and tonics poses a threat to both terrestrial and marine wildlife. The demand for and consumption of gill plates (known as Peng Yu Sai, "Fish Gill of Mobulid Ray") from devil and manta rays (subfamily Mobulinae, collectively referred to as mobulids) poses a significant threat to these marine fishes because of their extremely low productivity. The demand for these gill plates has driven an international trade supplied by largely unmonitored and unregulated catches from target and incidental fisheries around the world. Scientific research, conservation campaigns, and legal protections for devil rays have lagged behind those for manta rays despite similar threats across all mobulids. METHODS: To investigate the difference in attention given to devil rays and manta rays, we examined trends in the scientific literature and updated species distribution maps for all mobulids. Using available information on target and incidental fisheries, and gathering information on fishing and trade regulations (at international, national, and territorial levels), we examined how threats and protective measures overlap with species distribution. We then used a species conservation planning approach to develop the Global Devil and Manta Ray Conservation Strategy, specifying a vision, goals, objectives, and actions to advance the knowledge and protection of both devil and manta rays. RESULTS AND DISCUSSION: Our literature review revealed that there had been nearly 2.5-times more "manta"-titled publications, than "mobula" or "devil ray"-titled publications over the past 4.5 years (January 2012-June 2016). The majority of these recent publications were reports on occurrence of mobulid species. These publications contributed to updated Area of Occupancy and Extent of Occurrence maps which showed expanded distributions for most mobulid species and overlap between the two genera. While several international protections have recently expanded to include all mobulids, there remains a greater number of national, state, and territory-level protections for manta rays compared to devil rays. We hypothesize that there are fewer scientific publications and regulatory protections for devil rays due primarily to perceptions of charisma that favour manta rays. We suggest that the well-established species conservation framework used here offers an objective solution to close this gap. To advance the goals of the conservation strategy we highlight opportunities for parity in protection and suggest solutions to help reduce target and bycatch fisheries.

Decreasing spatial disorientation in care-home settings: How psychology can guide the development of dementia friendly design guidelines.

Alzheimer's disease results in marked declines in navigation skills that are particularly pronounced in unfamiliar environments. However, many people with Alzheimer's disease eventually face the challenge of having to learn their way around unfamiliar environments when moving into assisted living or care-homes. People with Alzheimer's disease would have an easier transition moving to new residences if these larger, and often more institutional, environments were designed to compensate for decreasing orientation skills. However, few existing dementia friendly design guidelines specifically address orientation and wayfinding. Those that do are often based on custom, practice or intuition and not well integrated with psychological and neuroscientific knowledge or navigation research, therefore often remaining unspecific. This paper discusses current dementia friendly design guidelines, reports findings from psychological and neuropsychological experiments on navigation and evaluates their potential for informing design guidelines that decrease spatial disorientation for people with dementia.

This Place Looks Familiar-How Navigators Distinguish Places with Ambiguous Landmark Objects When Learning Novel Routes.

We present two experiments investigating how navigators deal with ambiguous landmark information when learning unfamiliar routes. In the experiments we presented landmark objects repeatedly along a route, which allowed us to manipulate how informative single landmarks were (1) about the navigators' location along the route and (2) about the action navigators had to take at that location. Experiment 1 demonstrated that reducing location informativeness alone did not affect route learning performance. While reducing both location and action informativeness led to decreased route learning performance, participants still performed well above chance level. This demonstrates that they used other information than just the identity of landmark objects at their current position to disambiguate their location along the route. To investigate how navigators distinguish between visually identical intersections, we systematically manipulated the identity of landmark objects and the actions required at preceding intersections in Experiment 2. Results suggest that the direction of turn at the preceding intersections was sufficient to tell two otherwise identical intersections apart. Together, results from Experiments 1 and 2 suggest that route knowledge is more complex than simple stimulus-response associations and that neighboring places are tightly linked. These links not only encompass sequence information but also directional information which is used to identify the correct direction of travel at subsequent locations, but can also be used for self-localization.

The global economic impact of manta ray watching tourism.

As manta rays face increased threats from targeted and bycatch fisheries, manta ray watching tourism, if managed properly, may present an attractive economic alternative to consumptive use of these species. Both species in the genus Manta (Manta alfredi and Manta birostris) are classified by the International Union for the Conservation of Nature Red List as species Vulnerable to extinction in the wild, and are considered unsustainable as fisheries resources due to their conservative life history characteristics, which considerably reduce their ability to recover population numbers when depleted. Utilising dive operator surveys, Internet research, and a literature review, this study provides the first global estimate of the direct economic impact of manta ray watching tourism and examines the potential socio-economic benefits of non-consumptive manta ray watching operations relative to consumptive use of manta rays as a fishery resource. In the 23 countries in which manta ray watching operations meeting our criteria were identified, we estimated direct revenue to dive operators from manta ray dives and snorkels at over US$73 million annually and direct economic impact, including associated tourism expenditures, of US$140 million annually. Ten countries account for almost 93% of the global revenue estimate, specifically Japan, Indonesia, the Maldives, Mozambique, Thailand, Australia, Mexico, United States, Federated States of Micronesia and Palau. In many of the areas where directed fisheries for manta rays are known to occur, these activities overlap with manta ray tourism sites or the migratory range of the mantas on which these sites depend, and are likely to be unsustainable and detrimental to manta ray watching tourism.

Detection of postoperative sleep-disordered breathing using a portable monitoring device.

PURPOSE: Adverse surgical outcomes may occur more frequently in patients with sleep-disordered breathing (SDB). Despite this concern, there have been no prospective studies using objective measures of postoperative SDB to determine the scope of the problem. We designed a prospective study to determine the feasibility of identifying SDB in elective postoperative patients by the use of a type IV portable monitor (PM). METHODS: Patients >18 years old who presented for elective surgery with at least one postoperative hospital night on a non-monitored unit were enrolled and wore a type IV device that measured nasal flow, heart rate, and oxygen saturation on their first postoperative night. Respiratory disturbance index (RDI) and oxygen desaturation index (ODI) were generated for each patient. RESULTS: Data sufficient for interpretation were collected on 100/116 patients enrolled. SDB (RDI ≥5) was observed in 51% of the study group, and 17% had a RDI >15. An elevated ODI ≥5 was seen in 42%, while 17% had an ODI ≥15. Device malfunction occurred in 16% of the study participants. CONCLUSION: A type IV PM can be employed in the postoperative setting to detect and gauge the severity of SDB.