Learning From Experience: Running the EMBED-Care Cohort Study With People With Dementia and Their Carers During the COVID-19 Pandemic

Background/aims: The Empowering Better End of Life Care (EMBEDCare) Programme aims to deliver a step-change in caring for people living with dementia towards end of life. A key workstream is a large cohort study collecting data not available elsewhere. This aims to provide an in-depth understanding and new insights into the palliative care needs of people with dementia in their last 1-2 years of life and of family carers. Here, we discuss our recruitment and retention to better understand the cohort study experience during COVID-19. Methods: This longitudinal mixed method cohort intends to recruit 294 people living with dementia and family carers via acute hospitals in England. After baseline data collection occurs every two months for up to twelve months. Results: During the first nine months of recruitment, participating hospitals consented one-third to one-half of those eligible to participate. To date, of those consented 52% completed baseline, 17% have completed the first follow up and 7% the third follow-up. We consider the practical and methodological challenges encountered in opening, recruiting, running and retaining participants in a large cohort study during COVID-19. Then we reflect on our agile approach to adapt and adjust our practices as the pandemic continues and new challenges arise. We outline our attempts to ensure inclusive research practices and the practical issues in moving from face to face to remote data collection. Conclusions: Adapting the study, which was designed pre-COVID-19, enabled the EMBED-Care cohort study to open. We reflect on our decisions and consider whether an earlier radical re-think rather than an agile approach in the context of COVID-19 restrictions may have reaped greater success. We conclude by looking ahead as to how these experiences may influence post-pandemic research practices when working with vulnerable populations.

Impact of COVID-19 on solid organ transplantation

Purpose: Patterns of racial disparities have been identified throughout the history of American medicine. In December 2019, COVID-19 was first detected and has had a significant impact at a global level. Evidence suggests that racial and ethnic minorities bear a disproportionate COVID-19 burden. Since the onset of the pandemic, there has been a decrease in the number of solid organ transplants (SOT) performed. The main objective of this study was to evaluate the impact of COVID-19 on the field of solid organ transplantation. Methods: We conducted a retrospective cohort study on consecutive solid organ transplants performed in the U.S. before and after the onset of the COVID-19 pandemic from January 2019 through June 2020. We utilized national data from the United Network for Organ Sharing (UNOS) and the Organ Procurement Transplantation Network (OPTN). Deidentified data were analyzed on patients who underwent either kidney, liver, heart, lung, or combined heart and lung transplants. The number of transplants based on UNOS regions, age, gender, and ethnicity were analyzed. Results: Our data demonstrated significant declines in liver transplants among ethnic minorities compared to the white population (p<0.001). In patients under 18, liver transplants were significantly reduced (p<0.001), while liver and heart/ lung transplants were most impacted in the 18-49 age group (p<0.001). When comparing the number of SOTs by UNOS region, a significant decrease in kidney transplants was observed across regions 1, 7, 8, 9, and 10 (p<0.001). Additionally, liver transplants were markedly decreased in region 5 (p<0.001), as well as regions 4 and 7 (p<0.05). Finally, regions 2 and 9 demonstrated a statistically significant drop in heart/lung transplants (p<0.05). Conclusions: Amid the pandemic, organ transplantation has been deemed a medical emergency and yet there has been a significant decline in the number of transplants across UNOS regions, age groups, genders, organ types, and ethnicities. Despite the unique challenges brought about by COVID-19, physicians have managed to continue to carry out lifesaving transplant procedures.

Trust in older black, Asian and minority ethics persons with dementia and caregivers: The effects of COVID-19

Introduction: Members of Black, Asian and minority ethnic (BAME) communities in the UK have faced significant burden due to COVID-19. This population has had higher incidence rates of COVID-19, and also higher death rates. The pandemic has also disproportionately affected older adults, including those with dementia and as a result their caregivers. This study aims to explore culturally specific experiences of trust surrounding government policies, guidelines and services in BAME populations in the UK. Methods: Semi-structured interviews with 11 caregivers and 7 older adults with dementia were performed as part of a wider study on BAME experiences under COVID-19. Participants were recruited from national registries, such as Join Dementia Research, social media and word-ofmouth. Data was then analysed using thematic analysis methods with a specific focus on experiences around trust in guidelines, services and policy. Results: The concept of trust featured heavily in respondent interviews. Trust was seen as both a personal and a wider community issue. When stratified by ethnicity (within BAME communities) and other demographic factors, differences in level of trust and perception of guidelines and policies were found between groups - such as how much trust was put into government messaging. Conclusions: This paper looks at groups highly vulnerable to COVID-19 and their experiences of health and social policy. It is clear that attention must be paid to differences between different groups' cultural norms and structures in formulating and providing health and social care interventions. A move away from 'one-size-fits-all' policies may improve both the experience of health and social care interventions and promote feelings of inclusion and trust towards providers.

Rapid review of decision-making for place of care and death in older people: Lessons for COVID-19

IntroductionThe coronavirus pandemic (COVID-19) has affected the functioning and capacity of healthcare systems worldwide. COVID-19 has also disproportionately affected older adults, including those living with dementia. In the context of COVID-19, decision-making surrounding place of care and place of death in this population involves significant new challenges.ObjectivesTo explore key factors that influence place of care and place of death decisions in older adults. A secondary aim was to investigate key factors that influence the process and outcome of these decisions in older adults. To apply findings from current evidence to the context of COVID-19.MethodsRapid review of reviews, undertaken using WHO guidance for rapid reviews. Ten papers were included for full data extraction. These papers were published between 2005-2020. Data extracted was synthesised using narrative synthesis, with thematic analysis and tabulation.ResultsPapers included discussed actual place of death, as well as preferred. Results were divided into papers that explored the process of decision-making, and those that explored decision-making outcomes. Factors such as caregiver capacity, the availability of multidisciplinary teams, cultural appropriateness of care packages and advanced care planning were found to be key.ConclusionsThe process and outcomes of decision-making for older people are affected by many factors – all of which have the potential to influence both patients and caregivers experience of illness and dying. Within the context of COVID-19, such decisions may have to be made rapidly and be reflexive to changing needs of systems and of families and patients.

Rapid development of a decision-aid for people with dementia and their families during COVID-19

IntroductionCOVID-19 as a pandemic has disproportionately affected older adults, including those with dementia. The effects on health and social care systems has necessitated a rapid-response approach to care planning and decision-making in this population, with reflexivity and responsiveness to changing individual and system needs at its core. In light of this, a decision-making tool to help families of persons with dementia was developed using a combination of qualitative data and evidence synthesis.ObjectivesTo develop a decision-aid using a combination of assessment and evidence-gathering methods for families of persons with dementia.MethodsSemi-structured interviews with helpline staff from national end-of-life and supportive care organisations formed the basis of the tool design. Co-design with people living with dementia, current and former carers and experts in general practice and social care shaped the next stage. Simultaneously, a rapid review of current evidence on making decisions with older people at the end of life was undertaken.ResultsOutput from interviews covered many topics, including trust, agency and confusion in making decisions in the context of COVID-19. The rapid review of existing evidence highlighted the need to consider both process and outcome elements of decision-making.ConclusionsCombining different sources and forms of evidence was efficient and valuable in creating a novel decision-making tool for persons with dementia and their families within the context of COVID-19. The decision-aid covered care planning, caregiver support systems, access to information and contingency considerations. Upon publication, the tool was adopted by NHS England and other leading healthcare organisations.DisclosureNo significant relationships.

Psychiatric liaison service referral patterns during the UK COVID-19 pandemic: An observational study.

BACKGROUND AND OBJECTIVES: COVID-19 has had a profound effect on mental health. Liaison psychiatry teams assess and treat people in mental health crises in emergency departments (EDs) and on hospital wards. During the first pandemic wave, new Mental Health Crisis Assessment Services (MHCAS) were created to divert people away from EDs. Our objective was to describe patterns in referrals to psychiatric liaison services across the North Central London care sector (NCL) and explore the impact of a new MHCAS. METHODS: Retrospective study using routinely collected data (ED and ward referrals) from five liaison psychiatry services across NCL (total population 1.5 million people). We described referrals (per week and month) by individual liaison services and cross-sector, and patterns of activity (January 1st 2020 -September 31st 2020, weeks 1-39) compared with the same period in 2019. We calculated changes in the proportion of ED attendees (all-cause) referred to liaison psychiatry. RESULTS: From 2019-2020, total referrals decreased by 16.5% (12,265 to 10,247), a 16.4% decrease in ED referrals (9528 to 7965) and 16.6% decrease in ward referrals (2737 to 2282). There was a marked decrease in referrals during the first pandemic wave (March/April 2020), which increased after lockdown ended. The proportion of ED attendees referred to liaison psychiatry services increased compared to 2019. CONCLUSIONS: People in mental health crisis continued to seek help via ED/MHCAS and a higher proportion of people attending ED were referred to liaison psychiatry services just after the first pandemic wave. MHCAS absorbed some sector ED activity during the pandemic.