Technology is central in supporting older people with their daily tasks and independence at home. This project aimed to identify technologies that can be built into residential environments (e.g., appliances, fixtures, or fittings) to support older people in activities of daily living (ADL) through a horizon scan (HS) informed by public insights on unmet needs and priorities.

A survey of members of the public was conducted to prioritize outcomes included within an evidence and gap map (EGM) framework. The EGM aimed to illustrate the current landscape of technologies supporting ADL in residential settings (e.g., care homes) and innovation gaps. The EGM results were shared with end users in a workshop discussion on the current range of technologies aimed at supporting ADL in residential settings. This was facilitated using vignettes to elicit views on unmet needs and priorities for technology development. The workshop informed the scope of the HS to identify and prioritize emerging technologies that could address unmet needs.

This project successfully embedded public involvement throughout to identify innovation gaps in technologies supporting ADL, unmet needs among end users, and potential solutions to these needs. The HS identified 190 technologies that were ready to market. All the technologies had potential to address identified unmet needs and could be built into the residential environment to support older people with ADL and to improve their quality of life, independence, and safety at home. Horizon scanning research can meaningfully involve stakeholders and take direction from their insights to enable voices less often heard to drive innovation in areas where it is needed.

Involving stakeholders in research using evidence synthesis and qualitative methods helps to gain a better understanding of gaps in innovation, the related unmet needs, and the technologies that might address these needs. Public involvement in the survey and workshop influenced the conduct and interpretation of the EGM, the scope of the HS, and the interpretation of the findings.

The Dementia Action Plan for Wales (UK), published in 2018, includes aims for improving assessment and diagnosis, as well as suggestions for what might characterise services that provide optimal support. Wales is a largely rural country, a factor shown previously to impede access to services. Suitable support for people living with rarer dementias is also limited, which may be further exacerbated by living in a rural area. This a relatively unexplored area of research.

This study explored diagnosis and post-diagnostic support experiences of people affected by dementia across Wales, as well as exploring any differences as a function of type of dementia (typical/rare), and rurality (rural/urban). Further, it sought to gain insight and recommendations from people living with dementia and their carers around how the process may be improved for people in Wales.

A survey was developed using a range of both closed- and open-ended questions. It explored respondents’ experiences guided by the aims of the Dementia Action Plan for Wales around diagnosis and post-diagnostic support. The survey was shared online, open to anyone living with, or caring for someone living with dementia in Wales.

71 respondents completed the survey (people with dementia, n=10; carers/family members, n=61), living in rural/semi-rural (n=37) and in urban/suburban (n=34) areas, and experiences from people affected by both rare (n=17) and typical (n=49) dementias are reported (plus n=5 with no specific diagnosis). The results identified several challenges in the provision of support, indicating that there is some way to go before realising the ambition of Wales becoming a dementia-friendly nation. There are, however, examples of satisfaction with services and testimonials of good practice.

The results of this work highlight areas to target within the Dementia Action Plan for Wales to improve support, and more broadly provide recommendations for improving policy and practice, based on the experiences and wishes of people with lived experience.

Social connection is important for health, quality of life and care in long-term care (LTC) homes. However, research on how to improve social connection in LTC has been limited by lack of consensus on best approaches to measurement.

We will present a systematic review of measures of social connection developed for use in LTC residents, which aims to identify all existing measures and evaluate their measurement properties including structural validity, internal consistency, reliability and construct validity.

We are following Consensus-based Standards for the selection of health Measurement Instruments (COSMIN) systematic review methods. We searched multiple bibliographic databases from inception to November 2021 for studies that were conducted in LTC resident populations, quantified any aspect(s) of social connection, and reported at least one psychometric property for the measure(s) of social connection. We conducted a second targeted search in April 2022 based on our list of identified measures, supplemented with a list of measures used in previous research in this population. We are currently evaluating the measurement properties reported for each identified measure in accordance with COSMIN guidelines.

We have identified 68 studies reporting on 35 measures used to assess multiple aspects of social connection in LTC homes. The majority (n=25) were measures of quality of life, wellbeing or life satisfaction, which included a social connection subdomain, whilst only 10 measures specifically target social connection. From our pooled evaluation of 20 measures to date, we have found that 20% (n=4) have sufficient evidence of structural validity, 15% (n=3) have sufficient internal consistency, 25% (n=5) have sufficient reliability, and 15% (n=3) have sufficient construct validity.

Many measures have been used to assess social connection in LTC settings, but few are specifically designed for this purpose and they often have insufficient evidence for psychometric properties. This review will provide detailed evidence of the quality of these measures to enable future researchers to prioritise higher quality tools and will inform our development of a new person-centred social connection measurement tool for LTC residents in the Social Connection in Long-Term Care Home Residents (SONNET) study.

Social functioning is fundamental to human experience. The profound social functioning impairments affecting people with dementia are distressing to them and their families and account for significant individual, family and societal burden. There are no effective treatments that improve this major aspect of dementia, so there is urgent need to characterise social functioning decline in dementia and its consequences to inform future therapeutic approaches. In this symposium, an international panel will present perspectives on social functioning in dementia from across the disease course.

Neurological involvement associated with SARS-CoV-2 infection is increasingly recognized. However, the specific characteristics and prevalence in pediatric patients remain unclear. The objective of this study was to describe the neurological involvement in a multinational cohort of hospitalized pediatric patients with SARS-CoV-2.

This was a multicenter observational study of children <18 years of age with confirmed SARS-CoV-2 infection or multisystemic inflammatory syndrome (MIS-C) and laboratory evidence of SARS-CoV-2 infection in children, admitted to 15 tertiary hospitals/healthcare centers in Canada, Costa Rica, and Iran February 2020–May 2021. Descriptive statistical analyses were performed and logistic regression was used to identify factors associated with neurological involvement.

One-hundred forty-seven (21%) of 697 hospitalized children with SARS-CoV-2 infection had neurological signs/symptoms. Headache (n = 103), encephalopathy (n = 28), and seizures (n = 30) were the most reported. Neurological signs/symptoms were significantly associated with ICU admission (OR: 1.71, 95% CI: 1.15–2.55; p = 0.008), satisfaction of MIS-C criteria (OR: 3.71, 95% CI: 2.46–5.59; p < 0.001), fever during hospitalization (OR: 2.15, 95% CI: 1.46–3.15; p < 0.001), and gastrointestinal involvement (OR: 2.31, 95% CI: 1.58–3.40; p < 0.001). Non-headache neurological manifestations were significantly associated with ICU admission (OR: 1.92, 95% CI: 1.08–3.42; p = 0.026), underlying neurological disorders (OR: 2.98, 95% CI: 1.49–5.97, p = 0.002), and a history of fever prior to hospital admission (OR: 2.76, 95% CI: 1.58–4.82; p < 0.001).

In this study, approximately 21% of hospitalized children with SARS-CoV-2 infection had neurological signs/symptoms. Future studies should focus on pathogenesis and long-term outcomes in these children.

In clinical and translational research, data science is often and fortuitously integrated with data collection. This contrasts to the typical position of data scientists in other settings, where they are isolated from data collectors. Because of this, effective use of data science techniques to resolve translational questions requires innovation in the organization and management of these data.

We propose an operational framework that respects this important difference in how research teams are organized. To maximize the accuracy and speed of the clinical and translational data science enterprise under this framework, we define a set of eight best practices for data management.

In our own work at the University of Rochester, we have strived to utilize these practices in a customized version of the open source LabKey platform for integrated data management and collaboration. We have applied this platform to cohorts that longitudinally track multidomain data from over 3000 subjects.

We argue that this has made analytical datasets more readily available and lowered the bar to interdisciplinary collaboration, enabling a team-based data science that is unique to the clinical and translational setting.

Families express a need for information to support people with severe anorexia nervosa.

To examine the impact of the addition of a skills training intervention for caregivers (Experienced Caregivers Helping Others, ECHO) to standard care.

Patients over the age of 12 (mean age 26 years, duration 72 months illness) with a primary diagnosis of anorexia nervosa and their caregivers were recruited from 15 in-patient services in the UK. Families were randomised to ECHO (a book, DVDs and five coaching sessions per caregiver) or treatment as usual. Patient (n=178) and caregiver (n=268) outcomes were measured at discharge and 6 and 12 months after discharge.

Patients with caregivers in the ECHO group had reduced eating disorder psychopathology (EDE-Q) and improved quality of life (WHO-Quol; both effects small) and reduced in-patient bed days (7–12 months post-discharge). Caregivers in the ECHO group had reduced burden (Eating Disorder Symptom Impact Scale, EDSIS), expressed emotion (Family Questionnaire, FQ) and time spent caregiving at 6 months but these effects were diminished at 12 months.

Small but sustained improvements in symptoms and bed use are seen in the intervention group. Moreover, caregivers were less burdened and spent less time providing care. Caregivers had most benefit at 6 months suggesting that booster sessions, perhaps jointly with the patients, may be needed to maintain the effect. Sharing skills and information with caregivers may be an effective way to improve outcomes. This randomised controlled trial (RCT) was registered with Current Controlled Trials ISRCTN06149665.

Depression is a common and costly comorbidity in dementia. There are very few data on the cost-effectiveness of antidepressants for depression in dementia and their effects on carer outcomes.

To evaluate the cost-effectiveness of sertraline and mirtazapine compared with placebo for depression in dementia.

A pragmatic, multicentre, randomised placebo-controlled trial with a parallel cost-effectiveness analysis (trial registration: ISRCTN88882979 and EudraCT 2006-000105-38). The primary cost-effectiveness analysis compared differences in treatment costs for patients receiving sertraline, mirtazapine or placebo with differences in effectiveness measured by the primary outcome, total Cornell Scale for Depression in Dementia (CSDD) score, over two time periods: 0–13 weeks and 0–39 weeks. The secondary evaluation was a cost-utility analysis using quality-adjusted life years (QALYs) computed from the Euro-Qual (EQ-5D) and societal weights over those same periods.

There were 339 participants randomised and 326 with costs data (111 placebo, 107 sertraline, 108 mirtazapine). For the primary outcome, decrease in depression, mirtazapine and sertraline were not cost-effective compared with placebo. However, examining secondary outcomes, the time spent by unpaid carers caring for participants in the mirtazapine group was almost half that for patients receiving placebo (6.74 v. 12.27 hours per week) or sertraline (6.74 v. 12.32 hours per week). Informal care costs over 39 weeks were £1510 and £1522 less for the mirtazapine group compared with placebo and sertraline respectively.

In terms of reducing depression, mirtazapine and sertraline were not cost-effective for treating depression in dementia. However, mirtazapine does appear likely to have been cost-effective if costing includes the impact on unpaid carers and with quality of life included in the outcome. Unpaid (family) carer costs were lower with mirtazapine than sertraline or placebo. This may have been mediated via the putative ability of mirtazapine to ameliorate sleep disturbances and anxiety. Given the priority and the potential value of supporting family carers of people with dementia, further research is warranted to investigate the potential of mirtazapine to help with behavioural and psychological symptoms in dementia and in supporting carers.