Research Projects Filters

This page gathers information about completed or ongoing research projects on COVID-19 and long-term care. It will be updated and expanded as we get more information, and as the numbers of projects grow we will move this to a searchable page. If you would like to to contribute information about you project, please send the following to info@ltccovid.org:

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A comprehensive analytic framework for COVID-19 mortality in long term care facilities and neighborhoods applicable to major metropolitan centersOngoing

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Contact: Michael D Cailas https://pubhealthgis.uic.edu/profiles/michael-cailas/

Host institution: School of Public Health, University of Illinois at Chicago

Project team: Greg Arling (Purdue University), Matthew Blaser, Michael D. Cailas, John R. Canar, Brian Cooper, Joel Flax-Hatch, Peter J. Geraci, Kristin M. Osiecki, Apostolis Sambanis

Funding information: This project has been funded by the Public Health Geographic Information Systems program at the Health Policy and Administration Division of the School of Public Health, University of Illinois at Chicago

Project summary:

The goal of our project is to develop and apply a comprehensive analytical framework for analyzing COVID-19 mortality locally within neighborhoods and long-term care facilities in a major metropolitan center. During the current public health crisis, information on COVID-19 mortality has typically been reported for the overall population, at single time points, and without regard to locations such as long-term care facilities or other congregate settings. In our study of COVID-19 mortality in Cook County IL (Chicago and suburbs) we examined patterns in COVID-19 mortality over time at the neighborhood level (postal Zip codes) in households and in nursing homes and other long-term care facilities (LTCFs). This framework provides:

  • reliable estimates of commonly quoted COVID-19 mortality indicators;
  • a better understanding of spatial and temporal distribution of COVID-19 deaths;
  • accurate depictions of the role of race, ethnicity, and socioeconomic status in COVID-19 mortality; and
  • population and organizational parameters that can inform strategies for public health interventions.

Cook County, the primary setting for this study is a large urban area, located in the US Midwest, with 5.15 million people and covering 1,635 square miles. It has rich racial and socio-economic diversity, and it has a multiplicity of neighborhoods and LTCFs spread across the county.

The major source of mortality data for this study is the Medical Examiner (ME) Case Archive of COVID-19-related Deaths. This archive is organized in a searchable online database format and contains residential address and other information about decedents (age, gender, race, and cause of death) for all deaths that occurred in Cook County from January 2020 to present.

Another source of data is the COVID-19 Nursing Home Data, maintained by the Centers for Medicare and Medicaid Services (CMS), which contains a count of COVID-19 cases and deaths, updated weekly, among residents and staff in each of the 15,000+ nursing facilities in the United States. Information about nursing facility characteristics comes from Medicare’s Nursing Home Compare and from Brown University’s LTC Focus data system. Data on overall mortality come from the Johns Hopkins Coronavirus Resource Center.

Data on population size, age, race/ethnicity, and socio-economic status are obtained from the US Census at the block group level, and then aggregated to the postal zip code level for much of the analysis.

Data preparation and statistical analysis are performed with the IBM® SPSS® Modeller 18.2.1. Geocoding, data projections, geospatial data integration, mapping, and initial spatial analysis are performed using ESRI’s ArcGIS Pro.

Outputs:

In the first phase of our study, we examined the 1st wave of COVID-19 (Spring and early Summer) in order to identify temporal and spatial patterns of mortality over time in Cook County. Our framework provided a reliable estimation of high-risk LTCFs and neighborhoods, while avoiding the distortions caused by the commonly used overall population figures.

Chicago began experiencing a 2nd COVID-19 wave, along with the rest of the US in October. Our analysis of 2nd wave mortality shows a repeat of the patterns from the 1st wave. Mortality rates have been highest in many of the same high-risk neighborhoods containing disproportionately more people from racial/ethnic minorities, older people, and people with low SES. The surge in mortality in LTCFs tracked closely with the surge overall within the county. However, there was no significant association between neighborhoods experiencing high rates of mortality and neighborhoods containing LTCFs with the highest mortality rates. Wave 2 mortality in LTCFs has thus far been difficult to predict; neither 1st waive mortality rates nor facility characteristics were significantly associated with 2nd wave mortality in LTCFs.

Nonetheless, findings from this phase of our research point to the urgency of immediate action to prevent an acceleration of COVID-19 cases and consequent deaths both in LTCFs and high-risk neighborhoods, especially neighborhoods with concentrations of minority group residents. Moreover, distribution of vaccines should be prioritized not only to nursing home residents and staff, as currently planned, but also residents of high-risk neighborhoods.

Within this analytical framework, currently research is underway to examine the second wave within a large geographic region such at the North Central Region of the United States; commonly known as the Midwest; which is almost half of the surface area of the European Union countries.

In addition, as COVID-19 vaccines roll-out over the next several months, we will monitor their uptake and effectiveness by tracking mortality rates in neighborhoods and LTCFs in Cook County, and more generally across the Midwest.

Project website:https://pubhealthgis.uic.edu/covid-19-dashboard-maps/

File 1:Analyzing_COVID-19_Methods_508-1.pdf (1.2 MB)

File 2:OJPHI_12.2020.pdf (723.5 KB)

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A living systematic review of COVID-19 transmission and mortality in long-term careOngoing

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Contact: Maximilian Salcher-Konrad https://www.lse.ac.uk/cpec/people/maximilian-salcher-konrad

Host institution: London School of Economics and Political Science

Project team: Maximilian Salcher-Konrad, Arnoupe Jhass, Huseyin Naci, Marselia Tan, Adelina Comas-Herrera

Funding information:

Project summary:

This project aims to synthesise published studies of mortality rates and incidence of COVID-19 among people who use and provide long-term care (LTC). Acknowledging the evolving nature of evidence during the pandemic, this project was set up in April 2020 as a living systematic review with continuously updated database searches and publication of key findings. A protocol was published on the PROSPERO database of systematic reviews (CRD42020183557). Initial findings were reported on medRxiv and fed into a WHO Policy Brief on the prevention and management of COVID-19 in LTC.

We developed search terms for seven databases (MEDLINE; Embase; CINAHL Plus; Web of Science; Global Health; WHO COVID-19 Research Database; medRxiv) to identify all studies reporting primary data on COVID-19 related mortality and incidence of disease among LTC users and staff. We exclude studies not focusing on LTC. Included studies are critically appraised using the Joanna Briggs Institute critical appraisal tool for prevalence studies. We extract information on the number of deaths, COVID-19 related mortality rates, case fatality rates, and excess deaths (co-primary outcomes), as well as incidence of disease, hospitalisations, and ICU admissions. Findings are initially synthesised narratively. Upon assessment of the heterogeneity of populations in included studies, we will quantitatively synthesise rates of mortality and infection.

In the last published report (1 August 2020), a total of 54 study reports for 49 unique primary studies or outbreak reports were included, which documented the severe impact that COVID-19 had on LTC. In badly affected care homes, more than two thirds of residents may be infected with COVID-19, and close to one fifth of all residents at care homes with outbreaks may die as a result.

Outputs:

Project website:

File 1:COVID-19-sys-rev-mortality-31Jul2020-FINAL-FORMATTED.pdf (829.1 KB)

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A Rapid Appraisal of U.S. Healthcare Workers’ and Long Term Care Workers’ Perceptions of Care Delivery in the Context of the COVID-19 PandemicOngoing

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Contact: Dena Shenk

Host institution: University of North Carolina Charlotte

Project team: Dr. Andrea Freidus Dr. Dena Shenk Christin Wolf

Funding information:

Project summary:

This project is a three-phase rapid qualitative appraisal of the perspectives of workers providing LTC to older adults in central North Carolina during the pandemic. We conducted semi-structured interviews with 75 participants using a purposive sample from May to November, 2020. We included participants from both the range of congregate LTC communities and also in-home and community based services. This is a mirror study conducted as part of the global efforts to study healthcare workers experiences during the pandemic spearheaded by the Rapid Research, Evaluation and Appraisal Lab (RREAL) at University College London. Due to the on-going nature of the pandemic, we are preparing to follow up through focus groups with our participants which will include plans for reopening and vaccination.

Outputs:

Blogpost and two published articles are included. We will continue to publish in a wide variety of academic and professional journals, as well as developing reports.

Project website:

File 1:AAGE-blog.How-is-the-pandemic-affecting-people-with-dementia-case-study.docx (18.7 KB)

File 2:Anth-and-Aging-article.pdf (368.4 KB)

File 3:Human-Org-2020.pdf (436.4 KB)

AKCOVID: survey on the impact of the pandemic on 20-64 year olds in Austria, including informal carersOngoing

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Contact: Ricardo Rodrigues (contact person for long-term care)

Host institution: Institute for Advanced Studies (IHS), Vienna, Austria

Project team: Nadia Steiber (overall project coordinator), Andrea Schmidt (Austrian Public Health Institute), Cassandra Simmons (European Centre for Social Welfare Policy and Research), Ricardo Rodrigues (European Centre for Social Welfare Policy and Research)

Funding information: Chamber of Labour for Vienna (AK Wien), the European Centre for Social Welfare Policy and Research, and the Institute for Advanced Studies

Project summary:

This is a representative survey of the Austrian population aged 20-64 (N=2000) with detailed information on socio-demographics and impact of the pandemic on informal care (e.g. changes to intensity, prevalence and wellbeing and economic situation of carers), unmet needs and health, employment and income and education. A second wave is planned to be fielded in early 2021, making this a longitudinal survey allowing for more detailed analysis of data on heath and informal care, among other outputs.

Outputs:

Peer-reviewed journal articles and blog entries (in German and English) starting in early 2021 (see for example here: https://www.euro.centre.org/webitem/3855).

A preprint of the first article submitted is available for download here: https://www.researchgate.net/publication/346205616_Care_in_times_of_COVID-19_The_impact_of_the_pandemic_on_informal_caregiving_in_Austria

 

Project website:https://inprogress.ihs.ac.at/akcovid/

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Barriers and facilitators to reducing COVID-19 transmission in care homes: a qualitative exploration and surveyOngoing

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Contact: Diane Bunn https://www.uea.ac.uk/health-sciences/people/profile/d-bunn

Host institution: University of East Anglia

Project team: Professor Iain Lake, Dr Diane Bunn, Dr Julii Brainard, Dr Kathleen Lane, Dr Charlotte Salter

Funding information: NIHR Health Protection Research Unit in Emergency Preparedness at the University of East Anglia

Project summary:

The aim of this study is to extend our awareness of how care-home staff are coping with infection-control mitigation measures, so that we can identify issues facing care home (CH) workers and managers in delivering the safest possible care to their residents during the COVID-19 crisis and the challenges these may pose. We propose an online survey to provide broad insights, followed by key informant interviews to explore lived experiences in depth. Together, these will provide valuable insights into our understandings of the practicalities and challenges around transmission mitigation measures – the barriers and facilitators to limiting the spread of COVID-19.

To complete the survey, please click on this link.

We would also like to interview some care home staff by telephone or online. Online platforms may be Zoom, Microsoft Teams or WhatsApp, but others may be available. The choice will depend on what you prefer and whether the researcher has access to the same technology. If you are interested in this part please contact Dr Julii Brainard (j.brainard@uea.ac.uk) or Dr Diane Bunn (d.bunn@uea.ac.uk) at the University of East Anglia for further information.

Outputs:

When are outputs expected: April 2021

Other relevant publications from the team:
Brainard, J., Rushton, S., Winters, T., Hunter, P. R., Rushton, S., Winters, T., & Hunter, P. R. (2020). Introduction to and spread of COVID-19 in care homes in Norfolk, UK. Journal of Public Health. doi: https://doi.org/10.1101/2020.06.17.20133629

Brainard J., Weston D., Leach S. and Hunter P. (2020b) Factors that influence treatment-seeking expectations in response to infectious intestinal disease: Original survey and multinomial regression. Journal of infection and public health 13(4): 502-508.
Brainard, J, Jones, N, Lake, I, Hooper, L & Hunter, P 2020, ‘Community use of facemasks and similar barriers to prevent respiratory illness such as COVID-19: A rapid scoping review’, Eurosurveillance

Smith, E., Aldus, C. F., Brainard, J., Dunham, S., Hunter, P. R., & Steel, N. (2020). Testing for SARS-CoV-2 in care home staff and residents in English care homes: A service evaluation. MedRxiv, (August 6th), 1–15. Retrieved from doi: https://doi.org/10.1101/2020.08.04.20165928

Project website:http://epr.hpru.nihr.ac.uk/

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BrainLive: Connecting Families Living with Dementia in Pandemic Situations and BeyondOngoing

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Contact: Dr Gloria HY Wong https://www.socialwork.hku.hk/gloriawong/

Host institution: The University of Hong Kong

Project team: Principal Investigator: Dr Gloria HY Wong Co-investigators: Professor Aimee Spector, Dr Ruizhi Dai, Professor Doris SF Yu, Dr Anthony PH Kong, Dr Hao Luo, Professor Martin Knapp, Professor Terry YS Lum Project manager: Mr. Jacky CP Choy

Funding information: Simon K.Y. Lee Foundation, a Hong Kong based philanthropic foundation with a mission to improve the well-being of the elderly and enhance the access to quality education by underprivileged children.

Project summary:

BrainLive, funded the Simon K.Y. Lee Foundation, is a 2-year project that mainly aims to develop a best practice model of barrier-free online dementia community support service using information and communications technology (ICT) and productive ageing to deliver intervention and care. In 2 years, we will develop a tested model that is effective and equitable, with good economic value for society, and ready to be widely implemented in various community service settings. The project targets to test the feasibility, acceptability and sustainability of an online community-based dementia service model consisting of a package of evidence-based social care and intervention services for families living with dementia delivered via ICT tools with trained young-old volunteers support, with the following objectives: 1) ensure access to evidence-based intervention and care under infection control situations; 2) prepare families living with dementia and service providers for future remote service development by enhancing their ICT literacy in the post-pandemic era; 3) build capacity of the community to care for families living with dementia by developing young-old volunteers for remote dementia service; 4) promote innovations by NGOs to explore full potentials of ICT-enriched service for continued service, including involvement of carers in the long-term; and 5) identify using service data the best combination of the standard service package and other infrastructure and support for an optimised model to recommend in Hong Kong.

Outputs:

Expected Sep 2022

Project website:

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Care Homes and Coronavirus: Exploring the impact of the COVID-19 pandemic on the emotional wellbeing of care home practitioners (UK)Ongoing

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Contact: Kath Wilkinson https://www.arc-swp.nihr.ac.uk/staff/kath-wilkinson

Host institution: The project sits under a broader project involving working with care homes: Exeter University, Care Homes and Knowledge (ExCHANGE) Collaboration https://www.arc-swp.nihr.ac.uk/research/the-exchange-collaboration, University of Exeter, College of Medicine and Health

Project team: Kath Wilkinson, Jo Day, Iain Lang, Jo Thompson-Coon, Vicki Goodwin, Kristin Liabo, George Coxon, Geoffrey Cox

Funding information: Alzheimer’s Society and Dunhill Medical Trust

Project summary:

The aim of this research is to understand the impact of the COVID-19 pandemic on people working in care homes in England. We would like to explore and learn about how the pandemic has impacted on the emotional wellbeing of staff, including what is being done and could be done to try and protect and support wellbeing. The research involves remote interviews with care home owners, managers, and staff. Findings will be shared to enable learning about how best to support the emotional wellbeing of care home staff in the future. The project is running from November 2020 – July 2021. Please contact Kath if you would like to be involved or find out more.

The project sits under a broader project involving working with care homes: Exeter University, Care Homes and Knowledge (ExCHANGE) Collaboration https://www.arc-swp.nihr.ac.uk/research/the-exchange-collaboration, University of Exeter, College of Medicine and Health. Supported by the National Institute for Health Research (NIHR) Applied Research Collaboration South West Peninsula (PenARC).

Outputs:

summer 2021

Project website:https://www.arc-swp.nihr.ac.uk/research/the-exchange-collaboration

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Care homes, social distancing and behavioural changes – an assessment of the psychosocial impact of Coronavirus on families with relatives in care homes in Scotland.Ongoing

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Contact: George Palattiyil https://www.sps.ed.ac.uk/staff/social_work/george_palattiyil

Host institution: University of Edinburgh (Lead) in partnership with University of Strathclyde,, University of the West of Scotland, Institute for Research & Innovation in Social Services (IRISS) and Centre for Research on Families and Relationship (CRFR)

Project team: Sumeet Jain (The University of Edinburgh), Jo Hockley (The University of Edinburgh), Lynn Jamieson (The University of Edinburgh), Dina Sidhva (The University of the West of Scotland), Debbie Tolson (The University of the West of Scotland), Neil Quinn (University of Strathclyde), Trish Hafford-Letchfield (University of Strathclyde), Rikke Iversholt, Director, Institute for Research & Innovation in Social Services, and Linda McKie (The University of Edinburgh), Sarah Christison, Sarah Noone and Bruce Mason

Funding information: Chief Scientist Office. 6 month project.

Project summary:

Government-led mandates have sought to contain spread of coronavirus and reduce burdens on healthcare systems. This had unplanned impact on older people and their loved ones living in care homes in Scotland through social distancing and reduced personal contact. This research investigates the impact of this on the health and wellbeing of family carers. It also aims to learn from and share positive creative practices. Findings will inform longer term learning beyond COVID-19 about range and methods to support positive interactions between care home residents and their loved ones.

It has applied a mixed methods approach and has included: 35 in-depth interviews with family carers; 19 interviews with key stakeholders, most at senior level; 5 ‘creative cafes’ (or informal group sessions with care home staff); an online survey completed by 444 family carers between 31 Aug -21 Sept 2020.

Outputs:

Report to funders – 23 Nov 2020, launch of findings – mid-December 2020, further dissemination/engagement activities with policy-makers; social services workforce; carers (Dec 2020-March 2021), creation of teaching and learning resources from the work (Dec 2020-March 2021)

Project website:https://www.creativecovidcare.com/

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Caring from a Distance: using new and familiar means of keeping in touch with family and friends in care homes during COVID-19 (UK)Ongoing

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Contact: Caroline White https://www.hull.ac.uk/staff-directory/caroline-white

Host institution: University of Hull

Project team: Caroline White, Jane Wray, Clare Whitfield, Emma Wolverson

Funding information:

Project summary:

This study uses an online survey to explore carers’ experiences of staying in touch with family and friends living in care homes during COVID-19, during which many care homes have had no or restricted visiting. The study includes carers of people living with dementia; older adults; people with learning disabilities/intellectual disabilities, and physical disabilities. The aim of the study is to understand what works/does not work well, and provide better understanding of how families, friends and care home residents can keep in touch when carers can not visit as often as they would wish; if for example, they are ill, live at a distance, have other caring or employment responsibilities.

Outputs:

Expected Spring 2021

Project website:the survey is at https://hull.onlinesurveys.ac.uk/caring-from-a-distance-care-home-survey (and is available until December 2020)

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Confronted with COVID-19: Migrant live-in care during the pandemicOngoing

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Contact: Michael Leiblfinger http://decentcarework.net

Host institution: Johannes Kepler University Linz (AT), International Centre for Migration Policy Development (AT), Slovak Academy of Sciences (SK)

Project team: Michael Leiblfinger, Veronika Prieler, Mădălina Rogoz, Martina Sekulová

Funding information: Michael Leiblfinger and Veronika Prieler are part of the trinational research project Decent Care Work? Transnational Home Care Arrangements (http://decentcarework.net) and draw on the Austrian part chaired by Brigitte Aulenbacher, funded by the Austrian Science Fund FWF (I 3145 G-29).

Project summary:

The employment of mainly female live-in care workers has become an important pillar of elderly care regimes within Europe. Especially in familialistic welfare states, circularly migrating live-in carers typically from Central and Eastern Europe fill, at least partially, the so-called care gaps emerging from demographic changes as well as the increasing labour market participation of women. Closed borders and other pandemic-related measures put a (temporary) halt to the transnational migration of care workers. Austria, Romania, and Slovakia represent a particular case for studying the effects of COVID-19 responses: Austria is a country with a legalised and highly institutionalised live-in care model. Roughly 80% of care workers come from Romania and Slovakia and commute to Austria in short-term cyclical rotas. As these rotas typically range from two to four weeks, the transnational care arrangements were affected earlier by travel restrictions than in countries where migrant carers stay for longer periods.
By looking at the three mentioned countries, the project examines how live-in care and its workers were affected by the pandemic. We analyse relevant policies and measures in Austria, Romania, and Slovakia and draw on media reports about live-in care and interviews with representatives of live-in care workers’ organisations. What role do the existing regulation of live-in care as well as sending and receiving countries’ pandemic responses play for the situation of care workers? How do care workers, brokering agencies, and their respective organisations react to the pandemic-related difficulties, how do they try to assert their interests, and to what extent does this influence the precarious working and living conditions of care workers? The paper written within the project shows that the pandemic highlighted the fragility of live-in care arrangements and underlined that care workers’ wants, needs, and interests were not only subordinated to the wants and needs of care recipients and their families, but were also at the mercy of several countries and their policies. While both issues have always been true, the national focus of pandemic-related measures drew renewed attention to them as well as to the deep social, gender, and regional inequalities across Europe manifested in care mobility.

Outputs:

Currently, a paper and presentations

Project website:

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Controlling the spread of COVID-19 in care homes: health and social care partnerships LanarkshireOngoing

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Contact: Le Khanh Ngan Nguyen https://pureportal.strath.ac.uk/en/persons/le-khanh-ngan-nguyen/publications/

Host institution: University of Strathclyde

Project team: Strathclyde University: Le Khanh Ngan Nguyen, Dr Itamar Megiddo, Professor Susan Howick, Gillian Hopkins Anderson, Dr Robert Van Der Meer HSCP Lanarkshire: Dennis McLafferty Public Health Medicine - NHS Lanarkshire: Dr. Sahaya Josephine Pravinkumar

Funding information: SRSS - University REA and DHSC

Project summary:

Background

Scottish care homes are vulnerable to the widespread transmission of COVID-19 and poor outcomes. The COVID-19 pandemic has disproportionately high fatality rates among older adults, particularly those with comorbidities.

Care homes provide health and care services for approximately 40,000 residents, of which the majority are elders with complex medical and care needs.

COVID-19 has had a significant impact on the care homes within Lanarkshire, similar to other local authorities. While there is a plethora of research focusing on the spread of COVID-19 in the general population, research on the unique transmission dynamics and interventions for COVID-19 in care homes is negligible.

Infection control interventions in care homes need to be both effective in containing the spread of COVID-19 and also feasible to implement in this setting which has a dual nature: a healthcare institution and a home.

Research Aims

This research aim to:

  • evaluate the effectiveness of a range of interventions strategies in controlling COVID-19 in care homes
  • investigate the impact of staff sharing between care homes in Lanarkshire on the inter-facility transmission of COVID-19
  • answer emerging questions for care home stakeholders from Lanarkshire

Outputs:

Analysis 1: An evaluation of interventions implemented in care homes early on and an evaluation of additional interventions on top of these, including testing of staff and testing of residents – Evaluating intervention strategies in controlling coronavirus disease 2019 (COVID-19) spread in care homes: An agent-based model – PubMed (nih.gov)

Analysis 2: An evaluation of visiting policy in care homes as well as cohorting of staff and residents within care home – paper under review

Analysis 3: Impacts of various vaccination coverages on the spread of Covid-19 and deaths in care homes, report available here.

Project website:https://www.strath.ac.uk/research/subjects/managementscience/healthsystems/controllingthespreadofcovid-19incarehomes/

File 1:Report-3_Care-homes_Vaccination_Strathclyde.pdf (1.9 MB)

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Covid and Care Research GroupOngoing

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Contact: Nikita Simpson https://www.lse.ac.uk/anthropology/research/COVID-and-Care-Research-Group

Host institution: London School of Economics and Political Science

Project team: Laura Bear, Deborah James, Nick Long, Fenella Cannell, Rebecca Bowers, Jordan Vieira, Connor Watt, Anishka Gheewala Lohiya, Caroline Bazambanza, Milena Weurth, Alice Pearson, Olivia Vicol, Teodor Zidaru-Barbelescu, Catherine Whittle.

Funding information:

Project summary:

The Covid and Care Research Group are a collective of anthropologists, primarily from the London School of Economics. We draw on a range of methods such as ethnography, network analysis, citizen science and participatory research to understand the impact of the Covid-19 pandemic on the networks of care that animate social life for people across the UK. We explore issues related to gender, ethnicity, race, class and regional inequality. Our research group is collaborative in approach, and works with other disciplines, policy makers, community leaders and community groups across different locations to gain insights into these issues and to generate policy solutions and support local community initiatives.

Outputs:

We produce a range of outputs aimed at academic, public and policy-making audiences.

Our main findings report presents key findings from a 6-month ethnographic study on the impact of the Covid-19 pandemic on disadvantaged households and communities across the UK. This research involved in-depth interviews and multiple surveys with people across communities in the UK, with particular focus on a number of case studies of intersecting disadvantage. Crucially, our research has found that government policy can improve adherence to restrictions and reduce the negative impacts of the pandemic on disadvantaged communities by placing central importance on communities, social networks and households to the economy and social life. This would be the most effective way to increase public trust and adherence to Covid-19 measures, because it would recognise the suffering that communities have experienced and would build policy on the basis of what is most important to people – the thriving of their families and communities.

Project website:https://www.lse.ac.uk/anthropology/research/COVID-and-Care-Research-Group

File 1:ARighttoCare_CovidandCare_Final_1211.pdf (3.4 MB)

File 2:ExecSummary_2110.pdf (14.0 MB)

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COVID-19 and Caregivers of Assisted living Residents: their Experiences and Support needs (COVCARES-AB/BC)Ongoing

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Contact: Matthias Hoben https://apps.ualberta.ca/directory/person/mhoben

Host institution: University of Alberta

Project team: Matthias Hoben, University of Alberta Colleen Maxwell, University of Waterloo Jennifer Baumbusch, University of British Columbia David Hogan, University of Calgary Kim McGrail, University of British Columbia Andrea Gruneir, University of Alberta Natasha Lane, University of British Columbia Joseph Amuah, University of Ottawa Stephanie Chamberlain, University of Alberta Lauren Griffith, McMaster University Corinne Schalm, Government of Alberta, Continuing Care Branch Heather Cook, Ministry of Health, British Columbia Hude Quan, University of Alberta Sheryl Zimmerman, University of North Carolina (Chapel Hill)

Funding information: This project is funded by Alberta Innovates: https://albertainnovates.ca/impact/newsroom/helping-the-helpers-impacts-of-covid-19-on-assisted-living-residents-family-friends/

Project summary:

RATIONALE
COVID-19 has had a devastating impact on the quality of care and lives of vulnerable older adults across Canada. Persons of advanced age with complex chronic conditions and frailty have high rates of infection (and atypical presentation), and if infected, increased risks for severe illness and serious health outcomes. In Canada, up to 85% of COVID-19 deaths have occurred among frail older adults in congregate care settings. While most media and research attention has focused on residents of long-term care (LTC) homes, far less attention has been paid to other common continuing care settings such as assisted living (AL). This is a significant omission given the rapid growth in AL across Canada (particularly within British Columbia [BC] and Alberta [AB]) and the fact that AL residents exhibit similar vulnerabilities to those in LTC and reside in care settings similarly affected by insufficient staffing, oversight and resources for infection prevention and control. Importantly, relative to LTC, AL facilities offer fewer services and have lower staffing levels (including fewer skilled staff members per resident). Consequently, there is an expectation for significant family involvement in AL resident care.

Family caregivers are essential to ensuring older AL residents receive timely and appropriate care. Variation in the type and amount of health and social care they engage in is closely linked with the health and social status of residents and with their own health and well-being. Though the immediate and longer-term effects of COVID-19 (and related workforce shortages, physical distancing and social isolation) on AL residents and their families are expected to be extensive and long-lasting, they remain to be investigated in Canada.

AIM & OBJECTIVES
Our overall aim is to illuminate and understand the impact of COVID-19 (and associated social distancing restrictions and policies) on the care and oversight provided by family caregivers within a diverse array of AL facilities, and the resulting consequences for the health and psychosocial well-being of these essential (though often invisible) care providers. Our prospective observational study will include 1,000 family caregivers randomly sampled from (publicly subsidized) AL facilities across AB and BC. Extensive primary data collection strategies (family caregiver & facility telephone surveys) will be complemented with linkages to health administrative data. We will employ descriptive statistics and hierarchical mixed models to examine:

  1. The effects of COVID-19 and related facility restrictions on the types/amount of health and social care provided to residents by key family caregivers. [Impact on essential care]
  2. The impact of COVID-19 overall, and of associated changes in care activities and engagement by family caregivers, on the general health, health behaviours and psychosocial well-being of these caregivers. [Impact on caregiver]
  3. The nature and timing of COVID-19 related facility infection prevention and control policies, practices, and communication strategies (with family caregivers) as reported by key facility informants vs. family caregivers. [COVID-19 Preparedness]

We will further explore variation in the above estimates and associations by select family caregiver (e.g., age, gender, socioeconomic status), resident (e.g., age, sex, functional status) and facility characteristics (e.g., size, region, for-profit status, COVID-19 testing/outbreak status, visiting policies).

IMPACT
Our research addresses a significant knowledge gap regarding a growing (albeit neglected) care setting expected to be significantly affected by COVID-19. Our findings will directly inform the development and conditions for scale-up of policy and practice interventions to (i) ensure timely communication with, and engagement of, family caregivers in AL during emergencies; and, (ii) permit rapid and enhanced emergency preparedness, staffing and services in AL. Interventions targeting both are essential for mitigating the adverse consequences of future outbreaks and restrictions on residents’ and family caregivers’ health and psychosocial well-being.

Outputs:

Our stakeholder partners (provincial & regional healthcare decision makers and family caregiver advocates) worked closely with the research team to
develop the project and will continue to do so throughout (to provide input on key priorities and analyses, assist with interpretation of findings and contextual framing of research deliverables (integrated knowledge translation). We will develop targeted end-of-grant dissemination strategies for different audiences. For stakeholder partners, we will work collaboratively to produce summary reports tailored to the needs of provincial/regional decision makers, family caregivers and resident councils, and facility administrators/staff. This will include a series of high-level reports and presentations to permit
discussion of policy and practice implications and strategies for improvement (via end-of-grant summits in AB and BC), lay presentations and reports for caregivers/residents, and project specific infographics, webinars and social media to engage the broader public. For academic audiences, our findings will be disseminated via peer-reviewed publications (e.g., CMAJ, Medical Care, JAMDA) and conference presentations (e.g., Canadian Geriatrics/Gerontology meetings, International LTC Policy Network).

Our research will contribute knowledge that will not only help mitigate the spread of COVID-19 but to also minimize impacts on vulnerable persons. It will help to protect the rights, dignity and care of a vulnerable population uniquely affected but currently neglected in COVID-19 related priorities for resources, staffing and services. The variability in COVID-19 preparedness, outbreak management, and adverse outcomes observed across AL and LTC settings illustrates the potential for evidence-informed best care policies, practices and interventions. With our collaborators and established AL research platform, our work will accelerate the availability of robust, real-time evidence to inform the development and conditions for scale-up of policy and practice interventions to (i) ensure timely communication with, and engagement of, family caregivers in AL; and, (ii) permit rapid and enhanced preparedness, staffing and services in AL. Both are key to mitigating adverse consequences of future outbreaks and restrictions on residents’ and family caregivers’ health and psychosocial well-being.

Project website:https://sites.google.com/ualberta.ca/covcaresab-bc/home

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Covid-19 and medium term impact on Italian Long-Term Care sectorOngoing

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Contact: Elisabetta Notarnicola https://www.cergas.unibocconi.eu/wps/wcm/connect/cdr/cergas/home/people/affiliates/notarnicola+elisabetta

Host institution: CERGAS SDA Bocconi, Center for research on health and social care management at SDA Bocconi School of Management, Milan, Italy

Project team: Sara Berloto, Giovanni Fosti, Francesco Longo, Elisabetta Notarnicola, Eleonora Perobelli, Andrea Rotolo

Funding information: Essity Italian Branch

Project summary:

The Coronavirus outbreak shed light on major weaknesses that have been characterizing the Italian Long Term Care (LTC) for years. The research focuses on identifying which one were exacerbated in this time of crisis and so to support the understanding of the discontent that the sector has been experiencing over the past decade and future routes of innovation. The analysis is made of four parts: first, analyzing the main features of the Italian LTC sector before the Covid-19 outbreak to investigate the origins of the sector’s weaknesses; second, to deep dive on what happened in nursing homes at the peak of the emergence to investigate the role that the above-mentioned weaknesses played; third, analyzing regional policies for the LTC sector enacted in the hardest months for the country so to assess the institutional attitude towards the sector from the perspective of the public authorities in charge of regulating LTC, namely Regions; last, investigating care providers perspectives so to collect their original point of view concerning the impact of Covid-19 on the sector future. Consistently, the research approach is based on data concerning: LTC services distribution in the country; the spread of the Coronavirus among elderly in Italy and in nursing homes; a mapping of norms enacted in 9 regions on LTC during phase 1 and phase 2 of the emergency; a survey with care providers concerning the impact of Covid-19 on the sector. The research wants to contribute by discussing the main managerial issues stakeholders and policy makers should work on to solve the sector’s major weaknesses and support the sector in the future. Some example of topics that are discussed are: providers’ economic and financial sustainability; the management of human resources; measures to ensure proper coordination among LTC and healthcare services, and among the public and private world; the mission the LTC sector should pursue, along with its services.

Outputs:

When are To be published on an annual report, forthcoming January 2021

Project website:https://www.cergas.unibocconi.eu/wps/wcm/connect/Cdr/Cergas/Home/Observatories/OLTC_/

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CovId-19 and SOcial isoLATion in dEmentia care (ISOLATE): impact and needs of people with dementia, informal and professional caregiversOngoing

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Contact: Mandy Visser https://www.lumc.nl/org/unc-zh/onderzoek/Kwaliteit-van-leven/ISOLATE-Covid-19socialeisolatiedementie/

Host institution: Leiden University Medical Center, Department PHEG

Project team: Dr. Mandy Visser Dr Hanneke Smaling Dr. Bram Tilburgs Prof. Wilco Achterberg

Funding information: This research was supported by the Netherlands Organisation for Health Research and Development (ZonMw) grant number 50-56300-98-533

Project summary:

Social isolation due to COVID-19 restrictive measures appear to have a major influence on the well-being of people with dementia, informal caregivers, and professional caregivers. While loneliness and challenging behavior may increase in people with dementia, social support for informal caregivers is reduced and their burden increases. In addition, rules regarding physical distance and the use of personal protective equipment complicates the work of healthcare professionals.

This study investigates the impact of social isolation during the COVID-pandemic on home- and long-term care for people with dementia, informal caregivers, and professional caregivers. Interviews with 20 informal caregivers and 20 professional caregivers about their concerns, problems, and needs regarding dementia care and social well-being in times of social isolation will be conducted.

Outputs:

Expected outputs of the project will be:

  • Insight into the concerns, problems, and needs of people living with dementia, informal caregivers, and professional caregivers in times of social isolation during the COVID-pandemic, in both home- and long-term care.
  • Recommendations for policy that can be applied to home- and long-term care, aimed to optimize social-wellbeing for people with dementia, their informal caregivers, and professional caregivers during isolation.

Project website:https://www.lumc.nl/org/unc-zh/onderzoek/Kwaliteit-van-leven/ISOLATE-Covid-19socialeisolatiedementie/

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COVID-19 Care Home Sector StudyOngoing

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Contact: Fiona Marshall http://arc-em.nihr.ac.uk/research/covid-19-care-home-sectors-study

Host institution: School of Medicine, University of Nottingham

Project team: Dr Fiona Marshall Prof. Adam Gordon

Funding information: NIHR ARC EM

Project summary:

We are aware that many care home staff are finding it very challenging to respond to the pandemic in many ways. These include following evidenced-based guidelines and managing their fears in their day to day work. We wish to invite a wide range of providers working across the region who provide care towards vulnerable people living in residential settings, their own homes and supported housing to share the ways in which they have responded to the pandemic. We want to understand the different ways in which they have sought up-to-date information, the usefulness of that information and the ways in which they have used this to share their knowledge and expertise with others across the sectors.

During the pandemic, we will produce resources where gaps have been identified in knowledge and facilitate practical evidenced-based solutions to the problems facing the care home sectors. We will also determine if longer-term lessons can be learnt about bridging the gaps within and between different health and social care providers.

 

Outputs:
Care homes, their communities, and resilience in the face of the COVID-19 pandemic: interim findings from a qualitative study
Fiona Marshall, Adam L Gordon, John RF Gladman, Simon Bishop

 

Project website:http://arc-em.nihr.ac.uk/research/covid-19-care-home-sectors-study

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COVID-19 in Nursing Homes: Who is leaving the Job?Ongoing

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Contact: Verena Cimarolli https://www.ltsscenter.org/

Host institution: LeadingAge LTSS Center @UMass Boston

Project team: Natasha Bryant Robyn Stone

Funding information: Aging in America

Project summary:

The LTSS Center @UMass Boston formed a partnership with WeCare ConnectTM to study the impact of COVID-19 on the workforce employed by LeadingAge members. WeCare ConnectTM is a program/service used by aging services providers at more than 1,000 locations to collect ongoing feedback from new and existing employees, and employees who resign. Managers use this information to develop real-time solutions that help reduce turnover and improve retention. During the first phase of the collaboration, the LTSS Center asked WeCare ConnectTM to add questions to its employee interview battery during May 2020. The questions were designed to assess employees’ perceptions of organizational COVID-19 preparedness and communication, as well as internal and external stresses experienced by employees. During the second phase of the project, funded by Aging in America Inc., researchers will identify nursing home employees who answered the COVID-related questions in May and subsequently resigned from their jobs. Researchers will use COVID-related data from the May 2020 interviews, and data on the reasons employees gave for resigning, to explore the following research questions:

  1. What are the specific pandemic-related reasons employees report for why they resigned?
  2. What are the specific COVID-related stresses and challenges assessed in May 2020 that are associated with the decision of nursing home workers to resign from their jobs during the pandemic?
  3. Do these specific challenges and stresses vary by type of nursing home employee?
  4. How does the quality of employer preparedness and communication around COVID-19 impact the decision of workers to resign from the job?

Outputs:

Mid-2021

Project website:

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COWORKER Nursing Home Study: Effects of COVID-19 on the mental health of nursing home workers in IrelandOngoing

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Contact: Dr Conan Brady / Prof Declan McLoughlin

Host institution: Trinity College Dublin (TCD)

Project team: Dr Conan Brady / Prof Declan McLoughlin / Prof Iracema Leroi / Prof Blanaid Hayes / Prof Martina Hennessy / Prof Agnes Higgins / Prof Ricardo Segurado / Ms Deirdre Shanagher

Funding information: Funded by Dept of Psychiatry, TCD

Project summary:

This will be a cross-sectional, on-line, anonymous survey of nursing home staff (nurses, health care assistants and activity coordinators) within nursing homes affiliated with Nursing Homes Ireland in Ireland (Survey 1). The same survey will be repeated after 4-6 months to assess longer-term outcomes (Survey 2). To strengthen the overall study design, we are hoping to be able to link data from the two surveys by asking participants to generate their own unique anonymous identification number.

Distinguishing strengths of our study are inclusion of various HCWs, from a range of healthcare environments, with varying degrees of risk exposure, follow-up and an “opt-in” ability to link the two surveys. Additionally, we will be able to compare results with a similar survey targeted at hospital staff. The survey comprises of demographic information and validated questionnaires which assess healthcare workers psychological distress and coping strategies.

We will use mixed-methods to collect and analyse quantitative and qualitative data.

 

OBJECTIVES

  1. To measure the prevalence and extent of symptoms of stress, anxiety and depression among nursing home staff in Ireland in different professions during the Covid-19 pandemic.
  2. To identify nursing home staff perceptions about the COVID-19 pandemic, moral injury, coping strategies and help-seeking behaviours.
  3. To examine the longer-term risk of persisting mental health issues in nursing home staff during the Covid-19 pandemic.

Outputs:

Outputs expected in March 2021-October 2021

Project website:https://www.tcd.ie/medicine/psychiatry/research/depression/coworker-nursing/

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Development and evaluation of a training package to support the remote assessment and management of people with movement impairment and disability (UK)Ongoing

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Contact: Jennifer Freeman

Host institution: University of Plymouth

Project team: Jennifer Freeman

Funding information: National Institute for Health Research (NIHR), UK Research and Innovation (UKRI)

Project summary:

The need for rehabilitation for COVID-19 patients is escalating. The team will develop and evaluate a training package for NHS/social care staff to support them during remote assessment and management of COVID-19 patients requiring rehabilitation. This is challenging to do remotely, as balance and mobility cannot be easily assessed. The staff will be provided with practical guidance and training to increase their skills.

Outputs:

Project website:https://www.plymouth.ac.uk/research/centre-for-health-technology/remote-assessment-and-management-of-people-with-movement-impairment-and-disability

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Emergency strategies for mitigating the effects of Covid-19 in care homes in low and middle-income countries (Brazil, Mexico, South Africa)Ongoing

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Contact: Peter Lloyd-Sherlock https://people.uea.ac.uk/p_lloyd-sherlock

Host institution: University of East Anglia

Project team: Karla Giacomin (CEMAIS Foundation, Brazil), Meirelayne Duarte (University of Salvador, Brazil), Monica Frank (University of Salvador, Brazil), Veronica Montes de Oca (Autonomous University of Mexico), Marissa Vivaldo (Autonomous University of Mexico), Almudena Ocejo Rojo (Mexico City Government Department of Social Inclusion and Social Welfare), Leon Geffen (Samson Institute for Ageing Research, South Africa), Gabrielle Kelly (Samson Institute for Ageing Research, South Africa).

Funding information: UKRI GCRF/Newton Fund Agile Response call to address COVID-19

Project summary:

The project will develop and validate a conceptual framework which aims to enhance the capacity of state agencies in LMICs to address the potential effects of COVID-19 in care homes for older people. This will include (i) obtaining baseline information about vulnerability to COVID-19 for all care homes in three different sites, including unregistered care homes); (ii) reviewing current practice of relevant state agencies including intersectoral collaboration and specific responses to the pandemic; (iii) continual engagement with stakeholders to support enhanced practice; (iv) monitoring and review of changes to practice and related outcomes in care homes over an 18 month period.

We will apply a range of methods, including a mixed-methods survey of care homes, process evaluation and rapid review, and will conduct comparative analysis and dissemination to support the application of insights beyond the three study sites.

Outputs:

2021

Project website:https://corona-older.com/2020/11/05/developing-and-implementing-a-strategy-for-covid-19-and-long-term-care-facilities-for-older-people-in-the-brazilian-state-of-bahia https://corona-older.com/2020/06/09/an-emergency-strategy-for-managing-covid-19-in-care-homes-in-lmics-the-ciat-framework-version-1/

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Employing Personal Assistants during the Covid-19 pandemic: lessons for social care practiceOngoing

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Contact: Kritika Samsi https://www.kcl.ac.uk/people/kritika-samsi

Host institution: NIHR Policy Research Unit on Health and Social Care Workforce, The Policy Institute, King’s College London, https://www.kcl.ac.uk/scwru/index

Project team: Kritika Samsi, Jill Manthorpe, John Woolham and Monica Leverton

Funding information: NIHR School for Social Care Research

Project summary:

In this 17-month study we will provide evidence of the experiences of people employing their own care workers (Personal Assistants – PAs) during and after the Covid-19 pandemic to inform and improve care practice. Our previous work has asked PAs about their work during the Coronavirus pandemic. This new study will ask people who employ PAs about their experiences during the time of lockdown and beyond. We want to talk with people from different background and circumstances (e.g. those who may have ‘shielded’ or have a particular risk factor) and with both people who pay for a PA by Direct Payments from the council and those who pay their PA independently.

We will interview 70 individual employers (care users) and family members (if they are the employer because their relative cannot manage these arrangements), to learn from their experiences. We will also interview people from 5-6 brokerage or support agencies that help people find possible PAs, or support PA employers. The interviews will be done by phone or by video. We will examine and compare people’s experiences so that we can learn from them about the main pandemic period and beyond (if the virus declines) and to produce reports and outputs that are useful.

 

 

 

Outputs:

Outputs expected in 2022

Project website:https://www.kcl.ac.uk/research/employing-personal-assistants-during-covid-19

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Establishing the impact of COVID-19 on the health outcomes of domiciliary care workers in Wales using routine data: The OSCAR studyOngoing

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Contact: Prof Mike Robling https://www.cardiff.ac.uk/centre-for-trials-research/research/studies-and-trials/view/oscar

Host institution: Centre for Trials Research, Cardiff University

Project team: Mike Robling Rebecca Cannings-John Lucy Brookes-Howell Fiona Lugg-Widger Hayley Prout Hywel Jones Ashley Abari Ann John Kerenza Hood Daniel Thomas

Funding information: This research is funded by the Economic & Social Research Council (ESRC), as part of UK Research & Innovation’s rapid response to Covid-19.”

Project summary:

Domiciliary Care Workers (DCWs) are employed in both public and private sectors to support adults at home. The support they provide varies but often includes personal care, which demands close contact between care worker and the person being supported. Since the start of the COVID-19 pandemic, people working across the care sectors in England and Wales have experienced higher rates of death involving COVID-19 infection. Social care workers, in both residential and domiciliary care settings, have been particularly badly affected, with rates of death involving COVID-19 approximately double that for health care workers. We aim to generate rapid high-quality evidence based on the views of care workers and by data formed from linking care workers’ registration data to routine electronic heath record (EHR) data. We can use this information to inform public health interventions for safer working practice and additional support for care workers.

Outputs:

Within 12 months:

  • Generate rapid evidence on short-term outcomes;
  • Short-term report recommendations (briefing sessions to UK policy leads, high-level infographic driven professional and public-facing summaries via digital and social media platforms using evidence-based approaches for developing public health messages (eg GRAPHIC).
  • Publish protocol paper, short-term results (high impact, open access journals).

Within 18 months and beyond:

  • Generate evidence on long-term outcomes, generalisability assessment (to all UK nations), further recommendations to policy and practice;
  • Publish final results;
  • Foundations laid for longer-term research including exploration of UK wide data (e.g. NHS Digital) to benchmark future trends and plan policies.

Project website:https://osf.io/u3zfj/

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Evaluating and replicating local accountability platforms for residential care homes and social care services in Latin America (Argentina)Ongoing

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Contact: Peter Lloyd-Sherlock https://people.uea.ac.uk/p_lloyd-sherlock

Host institution: University of East Anglia

Project team: Lucas Sempe (UEA, UK), Nelida Redondo (Fundación SIDOM, Argentina), Magdalena Saieg (Fundación Navarro Viola, Argentina), Silvia Gascón (Red Mayor La Plata, Argentina), Lisandro Mariño (Camara de Hogares y Centros de Día de la Provincia de Buenos Aires, Argentina)

Funding information: Healthy Longevity Global Grand Challenge (UKRI).

Project summary:

Developing countries already contain large numbers of older people with social care needs, leading to a rapid growth in private provision, including residential services. Many operate on an informal, entirely unregulated basis. We have developed an online platform for sharing information about the quality of services in care homes for the city of La Plata, Argentina. This responded to concerns about poor service quality, an absence of public information and the limited capacity of official local regulators. The site, launched in 2019, consists of a simple interactive information-sharing platform. The site provides updated information about care homes and a set of service quality principles, developed in partnership with care home directors. It enables service users to provide feedback about providers. This feedback is not directly published on the site: instead, complaints are investigated and providers removed from the site if they are confirmed. The site also provides general information for service users to support the selection and assessment of social care services, and (more recently) the status of the COVID-19 pandemic in local care homes. Our project will evaluate the La Plata intervention, along with new related projects by other organisations in Argentina. We will assess the feasibility and potential benefits of scaling up over the next three years.

Outputs:

When are 2021

Project website:http://www.redmayorlaplata.com/

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Evidence-based supported digital intervention for improving wellbeing and health of people living in care homes WHELD during COVID-19 (UK)Ongoing

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Contact: Clive Ballard

Host institution: University of Exeter and King’s College London

Project team: Clive Ballard

Funding information: National Institute for Health Research (NIHR) and UK Research and Innovation (UKRI) COV0094)

Project summary:

The WHELD well-being training intervention for care homes has shown benefits in two clinical trials by improving quality of life, mental health and reduced use of sedatives, and has been developed for virtual supervision. It will now be adapted to the COVID-19 context; an “implementation ready” programme will then be rolled out for care homes nation-wide.

Outputs:

Project website:https://www.nihr.ac.uk/news/new-research-to-personalise-care-for-people-with-dementia-in-care-homes-during-covid-19-pandemic/25812

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Giving a voice to family care partners of older people about the meanings of their experience and recommendations for supportive actions during the COVID-19 pandemic: A critical ethnography (Canada)Ongoing

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Contact: Anne Bourbonnais https://www.chairepersonneagee.umontreal.ca/en/

Host institution: Université de Montréal and Research Centre of the Institut universitaire de gériatrie de Montréal

Project team: Anne Bourbonnais (Université de Montréal), Jennifer Baumbusch (University of British Columbia), Amy Hsu (Bruyère Research Institute), Stéphanie Daneau (Université du Québec à Trois-Rivières), Jacqueline Rousseau (Université de Montréal), Susan Macaulay (http://myalzheimersstory.com/about/)

Funding information: Research Chair in Nursing Care for Older People and their Families, Canada Research Chair in Care for Older People, and Research Centre of the Institut Universitaire de Gériatrie de Montréal

Project summary:

Using critical ethnography, we will: a) describe the sociocultural context during the COVID-19 pandemic, including facilitating and constraining aspects (prejudices, stereotypes, emotions, health services and policy) for care partners and older people; b) describe the meanings of being a family care partner of an older person living in a long-term care home (LTCH) during the COVID-19 pandemic and; c) elicit and describe the recommendations of care partners for supportive actions that should guide health professionals and public policy to ensure their health and the health of older people during an epidemic. We will recruit 20 to 30 family care partners of older people living in a LTCH. These care partners will either care (or have cared) for the older person living in a LTCH during the COVID-19 pandemic. They will be recruited using a purposive and snowball sampling strategy from a pool of participants from previous projects. We will collect data with a sociodemographic questionnaire, individual semi-structured interviews, field notes and artefacts in the form of articles, audio or video files from mainstream Canadian media and social media posts starting in March 2020. We will analyze all data with the method described by Spradley.

Outputs:

Some outputs are available. Publications are expected in early 2021.

Project website:

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How has COVID 19 affected the quality of life, wellbeing, and care of people diagnosed with dementia and their family carers? A nested Time for Dementia sub studyOngoing

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Contact: Stephanie Daley https://www.bsms.ac.uk/about/contact-us/staff/dr-stephanie-daley.aspx

Host institution: Centre for Dementia Studies, Brighton and Susex Medical School

Project team: Dr Stephanie Daley, Dr Nicolas Farina, Dr Laura Hughes, Dr Sam Robertson, Lauren Wonnacott, Dr Naji Tabet, Professor Sube Banerjee

Funding information: NIHR ARC KSS £30,000 SPFT/BSMS £30,000

Project summary:

Aim: To understand how COVID-19 has affected the quality of life, wellbeing, and care of people diagnosed with dementia and their family carers?

The COVID-19 nested study will used a mixed methods design within phase 2 of the wider TFD study. Quantitative measures of Quality of Life, Social functioning and illness severity before, during and after the social restrictions arising from the pandemic will be assessed. Additionally, qualitative interviews will be used to understand the experience in more depth, as well as factors which have specifically influenced QoL.

Design: This study will use a mixed methods approach; quantitatively measuring QoL, before, during and after the COVID 19 isolation period, and qualitatively, through semi structured in-depth qualitative telephone interviews to explore the impact in more detail.

Participants: Existing family carer participants (n=350) in the BSMS Time for Dementia (TfD) study will be invited to participate in this COVID 19 sub-study. TfD is a longitudinal undergraduate dementia education programme with a linked study running across Kent, Sussex and Surrey which directly involves people with dementia and their family carers. All of the potential participants have pre-COVID 19 QOL data that can be used as a baseline comparator.

 

Measures: DEMQOL-Proxy (Smith et al., 2007)

The Clinical Dementia Rating Scale (CDR; Morris, 1993)

SF-DEM: Social Functioning in Dementia scale, (SF-DEM; Sommerlad et al, 2015)

C-DEMQOL (Brown et al, 2018)

Outputs:

January 2021

Project website:https://www.bsms.ac.uk/research/neuroscience/cds/time-for-dementia/time-for-dementia.aspx

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HS&DR Project: NIHR 132541 Protecting older people living in care homes from COVID-19: challenges and solutions to implementing social distancing and isolation.Ongoing

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Contact: Joanne Fitzpatrick https://www.kcl.ac.uk/news/nihr-funds-new-study-into-protecting-older-people-in-care-homes-from-covid-19

Host institution: King's College London

Project team: Dr Joanne Fitzpatrick (King’s College London), Professor Ruth Harris (King’s College London), Professor Dame Anne Marie Rafferty (King’s College London), Dr Ivanka Ezhova (King’s College London), Professor Shereen Hussein (London School of Hygiene and Tropical Medicine), Sinead Palmer (PSSRU, University of Kent), Sally Brearley, Dr Richard Adams (Sears Healthcare), Lindsay Rees (Encore Care Homes)

Funding information: This project is funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research Programme (Project reference NIHR132541). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.

Project summary:

Older people living in care homes often have complex needs and are at high risk of poor health outcomes and mortality especially if they contract the coronavirus. To protect older people from the coronavirus, care homes use measures such as social distancing and isolating of residents. The care home sector has stated that implementing social distancing and isolation when caring for residents is a significant challenge. Currently, we do not have a good understanding of this challenge and how best to address it.

The aim of our research is to explore and understand the real-life experiences of implementing social distancing and isolation of residents in care homes for older people from the perspective of residents, families/friends, staff working in and with care homes, and to develop a toolkit of resources for health and care delivery now and to support further outbreaks of the coronavirus.

This 12-month study will be conducted in three phases; a rapid evidence review, in-depth case studies, and toolkit development.

Outputs:

Throughout and on completion of the project we will share the findings of our research in different ways and with different audiences. The toolkit of resources will share which interventions and strategies for social distancing and isolation for residents work well and which do not. These resources will support decision making about health and care delivery in care homes and help build resilience. Content will be presented in different ways to maximise accessibility and impact and will include a film to narrate the stories of older people, their families/friends and care home staff.

Project website:

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Identification and analysis of hospital discharges during March to May 2020 from NHS Scotland hospitals into care homesOngoing

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Contact: Jenni Burton

Host institution: University of Edinburgh and University of Glasgow

Project team: Professor Bruce Guthrie, University of Edinburgh & Dr Jenni Burton, University of Glasgow

Funding information: Public Health Scotland (https://beta.isdscotland.org/)

Project summary:

Identification and analysis of hospital discharges during March to May 2020 from NHS Scotland hospitals into care homes. Includes methodology, testing status and demographics of those discharged, then goes on to define and describe care home outbreaks with an analysis of the factors associated with those outbreaks.

 

 

Outputs:

Ongoing

Project website:https://beta.isdscotland.org/find-publications-and-data/population-health/covid-19/discharges-from-nhsscotland-hospitals-to-care-homes/

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Identifying approaches, barriers and facilitators to visiting in care homes during COVID-19Ongoing

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Contact: Prof Claire Surr

Host institution: Leeds Beckett University

Project team: Prof Claire Surr, Prof Anne-marie Bagnall, Dr Sarah Smith, Dr Rachael Kelley, Dr Alys Griffiths, Dr Liz Jones, Rebecca Platt, Olivia Robinson, Jo Crossland, Dr Graham Stokes, Caroline Baker, Dr Reena Devi, Dr Sahdia Parveen

Funding information: Internally funded by Leeds Beckett University

Project summary:

As a result of the COVID-19 pandemic, most care homes have stopped face-to-face visiting. In many care homes contact between residents with dementia and their families are limited to telephone, digital methods or through windows. Other homes have created COVID safe spaces where families can visit from behind a Perspex screen or at a social distance in gardens. Government guidance on visiting has changed numerous times over the pandemic, varies according to national and regional lock-down guidelines and is open to wide interpretation in the sector. Most of these approaches can be extremely difficult for people with dementia to engage with (due to not understanding why they cannot touch/hug their relative, why they are behind a screen etc) and gain comfort from. They may cause more distress than well-being for some residents and may be impossible for those with advanced dementia to take part in.

This topic is being discussed and debated widely in the news on a daily basis and evidence-based information and resources to support development of good-practice approaches in this area is required rapidly.

Our research aims to explore current visiting practices for relatives of care home residents with dementia across England, best practice approaches and barriers and facilitators to these.

Our study will involve

  • Rapid literature and practice review (via databases, social media, grey literature, on-line sources, media) of the evidence in this area and to develop a taxonomy of visiting practices related to relatives/friends of care home residents with dementia, pros and cons of these and barriers and facilitators to adopting them
  • National on-line surveys of relatives/friends of people with dementia living in care homes and care home providers in England – to identify how widely different approaches to visiting are being employed, their impact, reasons for use and barriers and facilitators to offering the least restrictive approaches to visiting.
  • In-depth telephone/video interviews with around 10 relatives and 10 care home managers/senior staff in England – to identify good practice (least restrictive approaches to visiting) and how these might be implemented more widely e.g. what needs to be in place

Outputs:

Rapid review publication including taxonomy of relative/friends visiting, report/publications on the survey and interview findings and recommendations around the setting conditions and supports needed to enable care homes to adopt the least restrictive approaches to visiting by relatives/friends/supporters of people with dementia. We will produce lay summaries and visual (e.g. infographic) representations of our findings to ensure they are accessible to care home staff and relatives/friends of care home residents.

Project website:https://padlet.com/CentreForDementiaResearch/xptuxjoyvvbkqevq

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Impact of COVID -19 on Nursing Assistants and Residents in Nursing HomesOngoing

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Contact: Verena Cimarolli https://www.ltsscenter.org/

Host institution: LeadingAge LTSS Center @UMass Boston

Project team: Verena Cimarolli Robyn Stone Natasha Bryant

Funding information: Patrick and Catherine Weldon Donaghue Medical Research Foundation.

Project summary:

Nursing homes (NHs) are currently facing an unprecedented crisis due to the rapid spread of COVID-19. Not only are NH residents/patients at risk for infection and death, but also are Certified Nursing Assistants (CNAs) who are on the frontlines providing hands-on care. Studies are needed to understand how the COVID-19 pandemic affects CNAs’ work-related well-being, job satisfaction and intention to stay on the job as well as the impact and challenges that COVID-19 has posed to providing quality care during this pandemic. The overall purpose of our proposed 18-month cross-sectional study is to investigate the impact of COVID-19 on CNAs and NH residents/patients when taking into account employers’ efforts to train and prepare CNAs for their work during COVID-19. Using data from a multi-site employee engagement and management system, and NH COVID-19-related data published by CMS, we will answer the following research questions: [1] what are levels of CNAs’ perceived preparedness and quality of employer communication around COVID-19? [2] what stresses and specific challenges do CNAs experience during this crisis? [3] how are perceived preparedness and quality of employer communication around COVID-19, and CNAs’ stresses/challenges experienced during COVID-19 associated with CNAs’ work-related well-being, job satisfaction, and intent to leave the job?, and [4] what facility-level and CNA work-related characteristics are associated with resident/patient COVID-19-related health outcomes? Insights from this study will help NHs to plan their response to the current crisis and future pandemics or other public health-related crises.

Outputs:

Peer-reviewed publications and research brief late 2021/early 2022

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Impact of COVID-19 pandemic on care home pathways, outcomes and safety of careOngoing

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Contact: Jo Knight https://www.lancaster.ac.uk/people-profiles/joanne-knight

Host institution: This project led by researchers at Lancaster University in the Medical School and Data Science Institute.

Project team: Suzanne Mason, Camila Caiado, Nancy Preston, Barbara Hanratty, James Limb, Ian Dove, Elizabeth Teale, Graham King, Alex Garner, Zoe Cockshott, Rachel Stocker, Sian Russell

Funding information: Funded by the Medical Research Council as part of the UKRI Rapid Response Initiative and is part of a broader programme investigating the effectiveness of the NHS Health Call Digital Care Home app, funded by HDRUK.

Project summary:

This study aims to evaluate the impact of the pandemic on health service provision and outcomes and provide evidence required to inform the future effective, safe management of care home residents. We will analyse linked care home, community, Emergency Department and hospital admissions data from the North East (n=68 homes, >2500 residents) spanning from before to the initial lockdown period to the present. Interviews with care home staff, residents and their families will be conducted, giving deeper insight into decision making processes and the impact those affected, allowing for an in-depth description of the pandemic in the care homes of the North East.

 

 

 

 

 

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Impact of COVID-19 public health measures on the life and wellbeing and access to care and support of people living with dementia and care partners in AustraliaOngoing

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Contact: Yun-Hee Jeon https://www.sydney.edu.au/medicine-health/about/our-people/academic-staff/yun-hee-jeon.html

Host institution: The University of Sydney

Project team: Yun-Hee Jeon, Mirim Shin, Donna Waters, Elizabeth Beattie, Henry Brodaty, Tony Hobbs, Kaele Stokes, Jason Burton, Sue Kurrle, Fran McInery, Jane Thompson, and Kimberley Bassett.

Funding information: None

Project summary:

The aims of this study are, from the perspectives of those with the lived experience, to examine the impact of COVID-19
public health measures on the life and wellbeing and access to care and support of people living with dementia and their care partners
(family, friends and other informal carers); and identify key issues and challenges as well as key lessons in terms of what
worked well, what did not, what was helpful and what was not.

METHODS
Design: A repeated cross-sectional survey of people living with dementia and current care partners, complemented by a
follow-up qualitative interview

Participants: People living with dementia and carer partners (families/friends who have primary care responsibility) in Australia

Recruitment: Volunteers from StepUp for Dementia Research and StepUp Champion Organisations (aged care providers and dementia peak bodies).

Data collection: Online and Telephone survey using REDCap (Time 1 in June-July 2020 & Time 2 in mid 2021, and qualitative interview (in August-September 2020).

Outputs:

The study is ongoing (Time 2 survey to be conducted April-May 2021)

Initial findings have been reported in the Dementia Australia discussion paper: One day the support was gone: The mental health impact of COVID-19 on people living with dementia, their families and carers. https://www.dementia.org.au/sites/default/files/2020-11/PFOD-Discussion-Paper-Nov-2020-ver1.pdf

Project website:https://www.stepupfordementiaresearch.org.au/category/in-the-news/

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Improved Testing for COVID-19 in Skilled Nursing Facilities: IMPACT-COngoing

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Contact: Sarah Berry, Vincent Mor https://impactcollaboratory.org/improved-testing-for-covid-19-in-skilled-nursing-facilities-impact-c/

Host institution: IMPACT Collaboratory Brown University School of Public Health, Center for Gerontology and Healthcare Research Marcus Institute for Aging Research, Hebrew SeniorLife

Project team: Sarah Berry (Co-PI, Hebrew SeniorLife), Vincent Mor (Co-PI, Brown University School of Public Health), David Gifford (American Health Care Association/National Center for Assisted Living), Jill Harrison (Brown University School of Public Health), Michael Mina (Harvard T.H. Chan School of Public Health), Douglas Fridsma (Inicio Health), Ed Davidson, (Insight Therapeutics), Stefan Gravenstein (Brown University Warren Alpert Medical School), Jonathan Jackson (Massachusetts General Hospital), Kimberly Johnson (Duke University School of Medicine), Rosa Baier (Brown University School of Public Health), Ana Montoya (University of Michigan Medical School), David Grabowski (Harvard Medical School), Cyrus Kosar (Brown University School of Public Health), Keith Goldfeld (New York University School of Medicine), Jasmine Travers (New York University School of Nursing), Maricruz Rivera-Hernandez (Brown University School of Public Health), Shekinah Fashaw (Brown University School of Public Health), Jeff Hiris (Brown University School of Public Health), Susan Mitchell (Hebrew SeniorLife), Elizabeth White (Brown University School of Public Health)

Funding information: National Institute on Aging, IMPACT Collaboratory supplement, 3U54AG063546-02S2

Project summary:

Our goal is to leverage the foundation of the NIA IMPACT Collaboratory to establish IMPACT-COVID-19 (IMPACT-C), which will be dedicated to developing and evaluating SARS-CoV-2 testing strategies among highly vulnerable skilled nursing facility (SNF) residents and workers. The organizational, administrative, and expertise components for IMPACT-C will include: leadership, regulatory structures, dissemination, and investigators. We will leverage IMPACT Collaboratory’s Data Sharing Collaborative that includes 11 national companies with >1,000 SNFs. We have established the infrastructure to securely and regularly receive daily EMR and COVID-19 data from this consortium and link it to Medicare claims and Minimum Data Set assessments. Using this rich and representative database, we will conduct a series of models to inform policies on SARS-CoV-2 testing and to forecast outbreaks. We have additionally designed a cluster RCT of 120-150 facilities to compare the effect of novel, point-of-care testing versus usual care on the rate of COVID-19 infections. Data will be shared with the RADx-UP Coordination and Data Collection Center.

Outputs:

Starting early 2021

Project website:https://impactcollaboratory.org/improved-testing-for-covid-19-in-skilled-nursing-facilities-impact-c/

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Improving the care of older adults living with dementia across Canada during the COVID pandemic: a mixed methods study to inform policy and practiceOngoing

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Contact: Juliette Champoux-Pellegrin https://www.mcgill.ca/familymed/research/projects/research-organization-healthcare-services-alzheimers-rosa/our-team

Host institution: McGill University

Project team: Isabelle Vedel, Dallas Seitz, Susan Bronskill, Carrie McAiney, Claire Godard-Sebillotte, Nadia Sourial, Yves Couturier, Machelle Wilchesky, Debra Morgan, Geneviève Arsenault-Lapierre, Mary Henein, Laura Rojas Rozo, Saskia Sivananthan

Funding information: This project is funded by the Canadian Institutes of Health Research and includes multiple international, national and provincial partners.

Project summary:

This project has 3 objectives:

  1. To measure the impact of the pandemic on health and social services use, infection rate and mortality of Persons living with dementia both in the community and in long-term care facilities. This will be done using provincial databases.
  2. To understand the Person living with dementia’s and caregivers’ perceived needs, behaviours and experiences of health and social services. This will done through interviews and questionnaires done and filled out by caregivers and Persons living with dementia’s.
  3. To generate and disseminate evidence-based and actionable recommendations on effective strategies to tackle the current wave of the pandemic and prepare for subsequent waves. We will hold a deliberative dialogue with all stakeholders involved.

Outputs:

2021

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LESS COVID-19: Learning by Experience and Supporting the Care Home Sector during the COVID-19 pandemic: Key lessons learnt, so far, by frontline care home and NHS staff (UK)Ongoing

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Contact: Karen Spilsbury https://medicinehealth.leeds.ac.uk/healthcare/staff/785/professor-karen-spilsbury

Host institution: School of Healthcare, Faculty of Medicine and Health, University of Leeds, Leeds UK working in partnership with the National Care Forum

Project team: Karen Spilsbury,1,2,3 Reena Devi,1,2 Amrit Daffu-O’Reilly,1 Alys Griffiths,2,4 Kirsty Haunch,1,2 Liz Jones,5 and Julienne Meyer5,6 Affiliations: 1University of Leeds, 2NICHE-Leeds, 3Applied Research Collaboration for Yorkshire and Humber (YHARC), 4Leeds Beckett University, 5National Care Forum, 6City, University of London

Funding information: Funding: This work was funded by the Dunhill Medical Trust (project reference 2020CD1). The views expressed are those of the author(s) and not necessarily those of the funder.

Project summary:

Summary:

Aim: To capture the experiences of frontline care home and NHS staff caring for older people with COVID-19 and to share the lessons learnt about the presentation, trajectories, and management of the infection with care homes that have and have not yet experienced the virus. We addressed this overall aim through the following objectives: To understand the clinical presentation and illness trajectories of COVID-19 for older people (aged over 65 years) being cared for in hospital and care homes; To describe what worked well and what more is needed for care and treatment of older people with COVID-19; To identify key lessons for supporting infected older people to recover well or, if that is not possible, to die well; To share findings and lessons learnt (objectives 1 to 3) with care home senior staff to explore useful strategies for managing the infection at an individual and organisational level within the home for the mutual benefit of residents, relatives and staff; and To explore the resonance and relevance of lessons learnt (objectives 1 to 4) with care home providers and to identify any gaps. Method: We used an appreciative approach, working across disciplinary boundaries and care settings. In phase 1 (June and July 2020) we interviewed 35 frontline staff (18 care home and 17 NHS staff) to address objectives 1 to 3 and gather in-depth understanding. In phase 2 (September 2020) we hosted a consultation event with 11 senior operational and quality managers in care homes to establish the resonance, relevance, and any gaps in relation to Phase 1 findings and strategies for managing COVID-19 at an organisational level within the home for the mutual benefit of residents, relatives and staff. All data collection was conducted remotely by video or telephone call.

Outputs:

Outputs: We have presented the findings to colleagues working in the care home sector. The report can be accessed https://niche.leeds.ac.uk/wp-content/uploads/sites/56/2020/10/LESS-COVID-19-SPILSBURY-ET-AL-2020.pdf or https://www.nationalcareforum.org.uk/wp-content/uploads/2020/10/LESS-COVID-19-v2.pdf.

Our intention is for the report to remain ‘active’ with opportunities to continue learning lessons and sharing strategies for the benefit of those living and working in care homes. We invite care providers to comment on resonance, relevance and gaps via an online survey (https://leeds.onlinesurveys.ac.uk/less-covid-report-feedback). We will review the report in January 2021. Beyond the funded work, we plan to co-create, with the care home sector, a range of resources to share the overall lessons learnt with frontline staff and provider organisations.

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Litigation in Response to COVID-19 in Australian Residential Aged Care and Immigration Detention (Australia)Ongoing

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Contact: Claire Loughnan https://findanexpert.unimelb.edu.au/profile/146247-claire-loughnan

Host institution: University of Melbourne and University of Technology Sydney

Project team: Sara Dehm, Claire Loughnan, Linda Steele

Funding information:

Project summary:

This project evaluates emerging litigation in relation to COVID-19 related deaths in Australian residential aged care centres, in terms of its capacity to address longer term structural harms of institutionalisation and activist calls for de-institutionalisation of aged care. In order to facilitate evaluation, the project compares aged care COVID-19 litigation with COVID-19 litigation strategies and outcomes in the context of an analogous confinement setting: immigration detention. The project involves critical analysis of court documents in COVID-19 litigation by reference to an interdisciplinary theoretical framework drawing on socio-legal studies, critical disability and ageing studies, and migration studies.

Outputs:

Journal article on project is currently under review.

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Long-term care and COVID-19 - a Scoping reviewOngoing

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Contact: Tine Rostgaard https://www.su.se/english/profiles/tiro0917-1.478940

Host institution: Department of Social work, Stockholm University

Project team: Professor emerita Marta Szebehely Dr. Elin Peterson

Funding information: Swedish research council FORTE

Project summary:

Long-term care services, in particular care homes, have been badly hit by the COVID-19 pandemic but to varying degree across countries. Between 0 and 80% of all cases of COVID-19 deaths have occurred among care home residents, while it is currently under-researched how home care users and LTC staff are affected. There is also considerable variation in the timing, sequencing and content of measures applied, on a general societal level, as well as in those applied in the LTC sector specifically, such as care home lock-downs and access to PPE and testing.

There is urgent need for policy makers and LTC provider organizations to learn from the emerging evidence, not the least in Sweden with comparably high death rates in society as a whole and in the LTC sector. Therefore, the aim of this scoping review is to identify and learn in a systematic way how older LTC users especially but also care workers and whole provider organizations are affected by the COVID-19 pandemic and the measures introduced. The review will focus on different measures and their effect on disease spreading and mortality among users and staff, as well as the effect on wellbeing and Quality of Life among users. When possible, the review will consider variation related to gender, class, ethnicity, and region in user outcomes.

We will map the emerging body of evidence, identify research gaps, and make recommendations for future research. The review is used also to inform six case studies (D, DK, ES, N, S, UK), presenting a time line of measures introduced and infection and mortality rates in LTC. In comparison to the review, this will have the country as a focus and w ill provide a more in-depth understanding of the relations between measures and outcomes, which will allow us to report on best practices and knowledge gaps.

Outputs:

The results of the review as well as the case study will be presented in two academic articles, and in a Swedish report and public event for national and local policy makers and LTC organizations.

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Long-term psychological impacts of COVID-19 public health measures on older people and those with dementia in low- and middle-income countriesOngoing

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Contact: Clarissa Giebel

Host institution: University of Liverpool

Project team: Clarissa Giebel, Mark Gabbay, Maria Isabel Zuluaga, Isaac Ddumba, Bwire Ivan, Gabriel Saldarriaga, Suresh Kumar, Jacqueline Cannon, Julie Dickinson

Funding information:

Project summary:

We will collect baseline and follow-up qualitative data from older adults, people with dementia, and family carers, and hold focus groups with care professionals, to explore the long-term impact of COVID-19 public health measures on their mental health. We will also hold coproduction workshops in each country to develop strategies to address mental health and well-being in each country and develop an external funding application. We will then compare how public health measures are affecting these vulnerable groups across the three different LMICs, to generate better understanding on how to support their mental health better during this ongoing pandemic.

Outputs:

Papers exploring the long-term psychological impacts of COVID-19 public health measures on older adults, and how these effects vary across different LMICs.

Lay summaries

Blogs

Short videos

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Mapping the impact of COVID-19 on unpaid carers. Findings from a rapid reviewOngoing

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Contact: Klara Lorenz-Dant https://www.lse.ac.uk/cpec/people/klara-lorenz

Host institution: Care Policy and Evaluation Centre, London School of Economics and Political Science

Project team: Klara Lorenz-Dant and Adelina Comas-Herrera

Funding information: none

Project summary:

We conducted a rapid review of the academic and grey literature to map the emerging evidence of the impact the COVID-19 pandemic and related public health measures have on unpaid family carers supporting adults with care needs. Our review spans evidence from Europe, Asia, Australasia, North America and Latin America.

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Mc-COVID19 - Coordination mechanisms in Coronavirus management between different levels of government and public policy sectors in 15 European countriesOngoing

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Contact: Francisco Javier Moreno Fuentes https://www.mc-covid.csic.es/english-version

Host institution: Institute of Public Goods and Policies, Spanish National Research Council (CSIC)

Project team: Project Coordinators o Eloísa del Pino o Francisco Javier Moreno Fuentes Research Team (alphabetical order) o Gibrán Cruz-Martínez o Jorge Hernández-Moreno o Luis Moreno o Manuel Pereira-Puga o Roberta Perna International team o Austria - Monika Riedel, Institute for Advanced Studies o Belgium - Jozef Pacolet, Research Institute for Work and Society, KU Leuven o Denmark - Tine Rostgaard, Roskilde University o Finland - Tyyne Ylinen, Vera Ylinen, Laura Kalliomaa-Puha, and Satu Ylinen. Tampere University & Social Insurance Institution of Finland - Kela o France - Arnaud Campéon, Blance Le Bihan, Michel Legros, and Claude Martin. EHESP French School of Public Health and CNRS. o Germany - Caspar Lückenbach, Eduard Klukas, Phillip Florian Schmidt and Thomas Gerlinger. Bielefeld University o Greece - Costis Prouskas, and Michael Goudoumas. Aktios SA o Ireland - Sara Burke, and Eimir Hurley. Centre for Health Policy and Management, Trinity College Dublin o Italy - Costanzo Ranci, and Marco Arlotti. Politecnico di Milano o Luxembourg - Robert Urbé. o Netherlands - María Bruquetas-Callejo, and Anita Böcker. Radboud University Nijmegen o Portugal - Luis Capucha, Nuno Nunes, and Alexandre Daniel Calado. Center for Research and Studies in Sociology (CIES-IUL) o Sweden - Lennarth Johansson (1) and Pär Schön (2). (1) Jönköping University, and Stockholm Gerontology Research Center. (2) Aging Research Center, Stockholm University, Karolinska Institutet o United Kingdom - England - Caroline Glendinning. University of York (emeritus).

Funding information: The Mc-COVID19 project has received funding from the Spanish National Research Council (CSIC) within the framework of the CSIC-COVID-19 program.

Project summary:

The Mc-COVID 19 project is set to analyse the socio-sanitary co-ordination procedures in the context of institutionalized older-age care (age group that appears particularly vulnerable in this epidemic context), in Spain as well as in the rest of the EU-15. This study focuses on the articulation of resources between health and social policies, and aim to contribute to improve the effectiveness of the decision-making process and crucial aspects in the fight against the pandemic. To better understand what happened in these centres and facilitate policy learning, this study identifies the difficulties faced by institutional actors and nursing homes’ managers between January and August 2020. To this end, the research team conducted 25 in-depth interviews with managers in such centres (directors, administrators, and medical supervisors) in various Spanish regions (Comunidades Autónomas). In addition, the research group interviewed high-ranking officials responsible for both social services and public healthcare at the central and regional levels, and representatives of the trade unions and the employers’ associations of the nursing homes. Furthermore, the team examined documents issued by governmental and independent sources, together with the results of a survey elaborated by the Institute for the Older-age and Social Services (IMSERSO) of the Ministry of Health. Findings aim to be useful to inform other public policy sectors involved in crisis-related situations.

Outputs:

Project website:https://www.mc-covid.csic.es/english-version

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Mental health impact of SARS-COV-2 second wave pandemic on long-term facility personnel in PolandOngoing

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Contact: Adrianna Senczyszyn https://www.en.umed.wroc.pl/

Host institution: Department of Psychiatry, Wroclaw Medical University, Wroclaw, Poland

Project team: Adrianna Senczyszyn, Katarzyna M. Lion, Dorota Szcześniak, Elżbieta Trypka, Justyna Mazurek, Marta Ciułkowicz, Maria Maćkowiak, Marta Lenart, Agnieszka Cyran, Joanna Rymaszewska

Funding information: none

Project summary:

The study aims to assess the long-term psychological consequences (psychopathological symptoms, anxiety and sleep disturbances) associated with the exposure of LTCF employees to the second wave COVID-19 pandemic in Poland. Access to personal protective equipment, mental health support at the workplace will be also examined as potential factors modifying the level of psychological distress. Quantitative data will be gathered by a population-based on-line survey administered between September 15 and November 15 2020 among LTCF personnel in Poland. Additionally, qualitative data will be collected through a focus group with LTCF employees. The project is a continuation of the research on psychological consequences arising from the exposure of LTCF employees in Poland to the SARS-CoV-2 crisis between May and June, 2020.

Outputs:

Outputs are expected to be available in February 2021

Project website:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7501840 https://ltccovid.org/2020/11/05/recommendations-to-support-the-mental-health-of-long-term-care-facility-personnel-during-the-covid-19-pandemic-based-on-a-national-survey-poland/

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Monitoring the impact of COVID-19 among care home residents in EnglandOngoing

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Contact: Marcello Morciano https://www.research.manchester.ac.uk/portal/marcello.morciano.html

Host institution: The University of Manchester, UK

Project team: Jonathan Stokes, Alex J Turner, Sharvari Patwardhan and colleagues at the University of Manchester.

Funding information: Part-funded by the National Institute for Health Research (NIHR) Applied Research Collaboration for Greater Manchester; the NIHR School for Primary Care Research (SPCR-2014-10043, grant ref no. 474); the NIHR Policy Research Unit in Health and Social Care Systems and Commissioning (PRUComm, PR-PRU-1217-20801).

Project summary:

We use nationally representative administrative data to describe the impact of COVID-19 among residents in the English care homes and the financial viability of the sector.

Using data from all care homes in England we estimated overall excess deaths and by care home characteristics: setting type (nursing or residential home), client types (offering services for people aged 65+ and/or people with dementia or offering services to children and adults), ownership status (whether not-for-profit – charity/NHS/LA-run homes – or for-profit), whether known to be affiliated to a large provider/brand or independent, and classification according to their registered maximum bed capacity (small, medium and large). Using data from the Capacity Tracker and CQC we’re examining how care home ownership and local care market structure are associated with the probability of experiencing and dealing with COVID-19 outbreaks in the English care homes.

Project website:https://www.research.manchester.ac.uk/portal/en/researchers/marcello-morciano(f4952779-6cc5-496d-a181-351ff636e1be)/activities.html https://www.arc-gm.nihr.ac.uk/projects/care-home-marketplace-GM

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Preparedness of Brazilian care homes managers to face the COVID-19 pandemic (Brazil)Ongoing

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Contact: Patrick Alexander Wachholz

Host institution: Professional Master´s degree in Clinical Research centre, Medical School (FMB) of São Paulo State University (Unesp), Botucatu Campus

Project team: Patrick A. Wachholz (Unesp), Alessandro Ferrari Jacinto (UNIFESP),Ruth Caldeira de Melo (USP), Paulo J.F. Villas Boas (Unesp)

Funding information: none

Project summary:

This study aimed to evaluate the preparedness and adherence of Brazilian care home managers to the recommendations of the World Health Organization infection prevention and control guidance for long-term care facilities in the context of COVID-19. The authors created a 46-item questionnaire using the ‘Infection prevention and control guidance for long-term care facilities in the context of COVID-19’, published by the World Health Organization on March 21st, 2020. We divided the questionnaire into nine sections: prevention, physical distance within the institution, rules for visitors, prospective surveillance for COVID-19 among residents, prospective surveillance among employees, source control, restrictions on movement and transportation, provision and availability of personal protective and cleaning equipment, technical support to face the pandemic. We created a global score of adherence to the IPC guidance based on the adoption of 20 questions related to IPC original questionnaire. We considered it as ‘excellent’ when at least 14/20 recommendations (70%) were fulfilled, as ‘good’ when 10 to 13 questions (50 – 69%), and ‘low’ when less than 12 items (<49%) were answered positively. We recorded the overall number of deaths and residents (and mortality rates) informed by care home managers in 2019 and 2018, and hope to compare this data with 2020 next year and identify if adherence to IPC recommendations influenced these rates.

Outputs:

end November 2020 (paper with descriptive data)

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Protecting environments for the Older people during the pandemic COVID-19 (Spain), Entornos de las personas mayores protectores en situaciones de emergencia sanitaria (COVID-19)Ongoing

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Contact: Dr Vicente Rodríguez and Carmen Pérez de Arenaza

Host institution: Institute of Economics, Geography and Demography (IEGD). Spanish National Research Council (CSIC)

Project team: Fermina Rojo-Pérez (IEGD, CSIC), Gloria Fernández-Mayoralas (IEGD, CSIC), Joao Forjaz (Institute of Health Carlos III), Carmen Rodríguez-Blázquez (Institute of Health Carlos III), Diego Sanchez-González (National Distance Education University, UNED), Rocío Fernández-Ballesteros (Autonomous Unversity, Madrid), María Angeles Molina-Martínez (Francisco de Vitoria University), Salomé Martín-García (EULEN Servicios Sociosanitarios)

Funding information: Spanish National Research Council (CSIC). COVID-19 Program (ref. 202010E158 – CSIC-COV19-050), with additional funding provided by the CSIC General Foundation under the program Reporting Science, for results dissemination and communication (ref. FGCCLC‐2021‐0012)

Project summary:

The project aims at analyzing the situation of the older people living in long-term care centres in the region of Madrid paying attention to the personal conditions, the health situation, the coping and resilient feelings facing the pandemic, the family and social relations, the social isolation and loneliness, the supporting conditions of living environments and their well-being and quality of life. A review of public policy measures regarding care homes will be also carried out. Research strategy consists on a combination of methods, quantitative survey and in-depth interviews. The project wants to give voice to older residents as the main source of information by means of a field work that involves access to residences that meet certain security requirements, respect for people’s dignity and non-invasion of your personal situation. Compliance with these conditions is ensured by the approval of the study in the Bioethics Committee of the Higher Council for Scientific Research.

Outputs:

When are The Project deadline is the end of 2021, when most scientific outcomes and dissemination and communication should be completed. Some intermediate results are expected to be presented in the meantime

Project website:Project updates will be provided on twitter (@CSICresideCOVID) and through blogs etc.

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Rapid evaluation of the COVID-19 pandemic response in palliative and end of life care: national delivery, workforce and symptom management (CovPall) (UK)Ongoing

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Contact: Irene Higginson

Host institution: King’s College London

Project team: Irene Higginson

Funding information: NIHR ARC South London (UK), MRC (UK), Cicely Saunders International (UK)

Project summary:

Palliative care and end of life care responses must be urgently evaluated to understand how they are responding to the COVID19 pandemic and how they can be improved, in terms of services, workforce and symptom management. The findings will provide insights to inform a coordinated and effective response and will be provided to the National Health Service and Public Health England.

Outputs:

Project website:https://www.kcl.ac.uk/cicelysaunders/research/evaluating/covpall-study

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Retention and Sustainability of Social Care Workforce (RESSCW, UK)Ongoing

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Contact: Florin Vadean and Shereen Hussein https://www.pssru.ac.uk

Host institution: Personal Social Services Research Unit (PSSRU), University of Kent

Project team: Florin Vadean (PSSRU, University of Kent), Shereen Hussein (PSSRU, University of Kent), Stephen Allan (PSSRU, University of Kent), Katerina Gousia (PSSRU, University of Kent), Agnes Turnpenny (PSSRU, University of Kent), Grace Collins (PSSRU, University of Kent), Ann-Marie Towers (CHSS, University of Kent), Eirini Saloniki (CHSS, University of Kent), Alex Bryson (Department of Social Science, UCL), J ohn Forth (Cass Business School, City University of London)

Funding information: Funding information: Health Foundation Efficiency Research Programme

Project summary:

Staff turnover and job vacancy rates are persistently high in UK social care. Understanding the drivers of staff retention and motivators of care staff is important to enable the sector to provide sustainable, high-quality services and meet increasing demand. This project, which runs between April 2019 and March 2022, aims to help social care providers, commissioners, regulators and policy-makers understand the specific organisational and individual drivers of staff retention in the social care sector by exploring:

  • What specific characteristics do social care workers have, and how committed are they to their jobs, when compared with workers in other low-wage service industries?
  • Why are there differences in retention rates between social care providers, and between social care and other low-wage service industries?
  • Why do care workers decide to leave their jobs, and why do some job leavers choose to leave the social care industry altogether?
  • What is the impact of COVID-19 on workforce retention and sustainability?

We are answering these questions by:

  • Analysing existing data from national surveys and large datasets, primarily: the UK Quarterly Labour Force Survey; the Annual Survey of Hours and Earnings; the Employer Skills Survey; the National Minimum Dataset for Social Care (NMDS-SC); the Skills for Care survey of individual employers and personal assistants; and the Care Quality Commission (CQC) health and social care provider register.
  • Collecting primary data on the impact of COVID-19 on the social care workforce by means of: a) a ‘pulse’ workforce web survey; and b) a longitudinal (two wave) telephone survey of care workers.
  • As well as carrying out the data analysis, we will consult and work closely with adult social care stakeholders, including providers, care users, care workers, family carers, commissioners, regulators and policy makers. We will organise annual workshops across the country to gather views on emerging findings and generate examples of ‘good working conditions/quality jobs’ in the social care industry, and pathways to achieve these nationally.

Outputs:

When are Ongoing

Project website:www.pssru.ac.uk/resscw/frontpage

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Social Care COVID Recovery & Resilience: Learning lessons from international responses to the COVID-19 pandemic in long-term care systemsOngoing

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Contact: Adelina Comas-Herrera https://www.lse.ac.uk/cpec

Host institution: Care Policy and Evaluation Centre, Department of Health Policy, London School of Economics and Political Science and the Nuffield Trust

Project team: Adelina Comas-Herrera (PI), Natasha Curry (co-lead), Erica Breuer, William Byrd, Margaret Dangoor, Nigel Edwards, Stefanie Ettelt, Jose-Luis Fernandez, Nina Hemmings, Martin Knapp, Margrieta Langins, Shoshana Lauter, Klara Lorenz-Dant, Camille Oung, Maximilien Salcher-Konrad, Sian Smith and Jessica J. Yu, in collaboration with the National Care Forum.

Funding information: National Institute for Health Research (NIHR), Policy Research Programme (PRP) - Recovery, Renewal, Reset: Research to inform policy responses to COVID-19 in the health and social care systems. Grant number: NIHR202333

Project summary:

The Covid-19 pandemic has had enormous impacts on people who use and provide long-term care in England, in terms of mortality, mental and physical health, and financial impacts on care provider.

This project will generate learning from scientific evidence and relevant experiences of other countries in relation to Covid-19 in the social care sector, in order to inform policies to improve the resilience of the social care sector in England and support its recovery. We will do this through:

  • Co-development of a framework to provide strategic direction for how the social care sector (including residential and community settings, and provided by paid and unpaid carers) in England can recover from, and be more resilient to future pandemics and shocks;
  • Synthesis of international evidence and lessons relevant to the English social care sector;
  • Informing development of policies to improve the resilience of the sector to future pandemics and shocks and to support recovery.

Methods:

  1. We will carry out a Situational Analysis, consisting of a structured desk review and stakeholder interviews, covering the impact of the Covid-19 pandemic on people who use and provide social care in England, of the policy and practice responses to mitigate those impacts, and the factors that supported or hindered the implementation of policies in England. We will use this situational analysis, as well as a Theory of Change (ToC) workshop with key stakeholders, to establish a framework from which to assess the relevance of international experiences and evidence to the social care system in England.
  2. We will then carry out evidence reviews to map and synthesize empirical evidence on the effectiveness of key policy and practice measures to prevent and mitigate the impact of the pandemic and barriers and facilitators of implementation of those measures.
  3. We will use a case study approach, including document analysis and interviews, to review in detail the experiences and learnings from 4 countries, from the perspective of relevance to the English social care system.
  4. Finally, we will apply the framework developed through ToC to synthesize findings from these workstreams.

Outputs:

The project started in January 2021 and will end in June 2022, we expect the first interim outputs around April 2021.

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STrengthening Responses to dementia In DEveloping countriesOngoing

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Contact: Nicolas Farina https://www.bsms.ac.uk/about/contact-us/staff/dr-nicolas-farina.aspx

Host institution: London School of Economics and Political Science

Project team: Nicolas Farina, Roxanne Jacobs, Tara Sani, Marguerite Schneider, Imelda Theresia, Yuda Turana, Emiliano Albanese, Sumaiyah Docrat, Petra Du Toit, Cleusa Ferri, Ishtar Govia, Adelina Comas-Herrera, Aliaa Ibnidris, Klara Lorenz-Dant, Martin Knapp & Sube Banerjee

Funding information: UK Research and Innovation’s Global Challenges Research Fund (ES/P010938/1)

Project summary:

Few low- and middle-income countries have data on dementia prevalence obtained directly from their own populations. One element of the STRiDE programme (STrengthening Responses to dementia In DEveloping countries, http://www.stride-dementia.org/) aims to fill this gap by generating new prevalence evidence in two (South Africa and Indonesia) of the seven STRiDE countries (Brazil, India, Indonesia, Jamaica, Kenya, Mexico, and South Africa). STRiDE is designed to support and accelerate the development of effective dementia policy and national planning in these seven countries and a toolkit that can be applied in other low- and middle-income countries, with the ultimate goal of improving dementia care, treatment and support systems so that people with dementia are able to live well.

Within the prevalence study, 4,400 older adults (and an informant/carer) will be recruited from sites in Indonesia (n=2,200) and South Africa (n=2,200). Whilst the primary outcome will the estimated prevalence of dementia within each country, participants will be asked questions across the following 11 domains: (i) dementia staging, (ii) cognitive measures, (iii) socio-demographics, (iv) costings, (v) activities of daily living and disability, (vi) neuropsychiatric symptoms and depression, (vii) generic quality of life and wellbeing, (viii) disease specific quality of life, (ix) carer burden, (x) stigma, and (xi) elder abuse.

Within some of these domains we will also ask a series of questions related to the impact of COVID-19 on participants’ (e.g. person with dementia and carer) lives, including:

  • Household debt
  • Household income
  • Household spending
  • COVID symptoms, testing and deaths in the household
  • Impact of day-to-day life
  • Impact of health and wellbeing
  • Impact on caring role

Outputs:

Q4 2021

Project website:http://www.stride-dementia.org/

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Supporting Care Home Residents Living with Dementia and Hearing Loss and the Impacts of COVID-19 on Current PracticeOngoing

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Contact: Hannah Cross

Host institution: University of Manchester

Project team: Hannah Cross, Dr Rebecca Millman, Prof Chris Armitage, Dr Piers Dawes, Prof Iracema Leroi

Funding information: Alzheimer's Society

Project summary:

Both dementia and hearing loss are highly prevalent in care home residents and often lead to poor outcomes such as impaired communication and reduced quality of life. Despite this, previous literature suggests that hearing loss is often poorly managed in care homes, particularly for residents living with dementia. It is likely that COVID-19 has exacerbated existing communication difficulties and access to hearing rehabilitation. For example, by the use of face masks and visors, audiology visitation restrictions, social distancing and other measures. This study will address the driving factors for providing hearing loss support and barriers to doing so in the care home setting, taking into account the COVID-19 pandemic within care homes.

The study adopts a mixed-methods approach with both online surveys and follow-up semi-structured interviews. Participants include frontline care home staff such as registered nurses, care workers and other healthcare professionals.

Outputs:

Mid 2021

Project website:

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Supporting the Aged Care Sector in Preventing and Mitigating the Negative Impact of COVID-19 on Older Persons in MalaysiaOngoing

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Contact: Rahimah Ibrahim http://myageing.upm.edu.my

Host institution: Malaysian Research Institute on Ageing, Universiti Putra Malaysia

Project team: Tengku Aizan Tengku Abdul Hamid Tan Maw Pin Siti Anom Ahmad Wan Aliaa Wan Sulaiman Fakhrul Zaman Rokhani Yap Wei Aun Hakimah Mohamad Sallehudin Kejal Hasmuk Delren Thomas Douglas Chai Sen Tyng Norisma Aiza Ismail Siti Suhailah Abdullah Siti Aisyah Nor Akahbar

Funding information: World Health Organization [WHO 2020/1026103-0] Period - June, 2020 - February, 2021

Project summary:

This primary purpose of this activity is to improve the early recognition, prevention, response and control of COVID-19 among older persons living in institutions and the community-at-large. The specific objectives are as follows:
1. To support related government agencies in the comprehensive development of guidelines for the welfare and care management of older persons in long-term care facilities during COVID-19 pandemic period;
2. To evaluate the needs of at-risk and vulnerable older persons and assess the operational challenges of relevant health and social aged care providers in managing the risks and impact of COVID-19 on the elderly; and
3. To strengthen the capacity of aged care service providers, including care workers and family caregivers, in the management of older persons with chronic multimorbidity during COVID-19 pandemic period by coordinating information and resources across different sectors and at all levels.

Outputs:

The work with MOH, MWFCD and relevant stakeholders on the capacity building of IPC measures for the older population living in communities as well as facilities
Output 1: To develop comprehensive national guidelines with multiple scenarios and other official materials (i.e. checklists, toolkits, instructional videos) for the detection, prevention, response and control of COVID-19 among older Malaysians living in institutions and the community.
Output 2: To conduct rapid, web-based behavioral insight assessments, evaluate the health and social care needs of at-risk older persons during the coronavirus pandemic as well as identifying the challenges of aged care providers in different settings for policy input.
Output 3: To conduct infection control training through an enhanced industry-wide network and facilitate the acquisition of needed PPE supplies to strengthen the capacity of aged care operators, care workers and family caregivers in the care management of older persons.

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Supporting the Sustainability of Long-Term Residential Care in a COVID-19 Environment and in the FutureOngoing

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Contact: Brendan Walsh

Host institution: Economic and Social Research Institute, Dublin

Project team: Dr Maev-Ann Wren, Dr Sheelah Connolly

Funding information:

Project summary:

This research will provide evidence on long-term care homes in Ireland during the COVID-19 pandemic and inform how best to ensure the sustainability of long-term care homes in the longer term. The project is funded by a Research Collaborative in Quality and Patient Safety (RCQPS) COVID-19 Pandemic Award. The project will examine if particular types of long-term care homes were more likely to experience higher COVID-19 infections and deaths. Findings will provide evidence on which homes may require additional support during the pandemic and beyond. The project will also review some of the temporary measures introduced during COVID-19 to support the sector, and assess if, and to what extent, these measures may be necessary in the future to maximise the safety of residents and the sustainability of long-term care homes. A key component of the project is to work closely with knowledge users in the Department of Health and the Health Service Executive to ensure findings from the project can be used to inform policy in practice.

Outputs:
  • Research paper on the association between long-term residential care home characteristics and COVID-19 infections and deaths in Ireland.
  • Research paper on the impact the Temporary Assistance Payment Scheme had on reducing COVID-19 outbreaks in Ireland.

Project website:https://www.esri.ie/current-research/supporting-the-sustainability-of-long-term-residential-care-in-a-covid-19

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Survey on the consequences of the COVID-19 outbreak on informal carersOngoing

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Contact: Stecy Yghemonos https://eurocarers.org/

Host institution: Eurocarers and Istituto Nazionale di Riposo e Cura degli Anziani (INRCA)

Project team: Marco Socci, Sabrina Quattrini, Giovanni Lamura and Sara Santini (IRCCS INRCA) / Stecy Yghemonos and Olivier Jacqmain (Eurocarers)

Funding information: Co-funded by the European Commission via the EU Programme for Employment and Social Innovation (EaSI)

Project summary:

This study is targeted at all European informal/family/unpaid carers providing care to people due to their physical or mental illness, disability or old age. Through an online survey (https://www.surveymonkey.com/r/8B5NBJR?lang=en), it aims to document and analyse how the COVID-19 outbreak has impacted on informal carers’ health, caregiving situation, support networks, access to health and social services, working status, work-life balance and finances – among other aspects. It also seeks to collect carers’ views and recommendations on how to better support informal cares in times of a pandemic.

 

Outputs:

Eurocarers will publish a report summarising the results of the survey in 2021

Project website:Link to the survey (currently available in 6 languages) - https://eurocarers.org/study-on-the-consequences-of-the-covid-19-outbreak-on-informal-carers-across-europe/

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Taking a break. Use of residential respite by people with dementia and carers: access, experience, outcomes (UK)Ongoing

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Contact: Laura Cole https://www.kcl.ac.uk/people/laura-cole

Host institution: NIHR Policy Research Unit on Health and Social Care Workforce, The Policy Institute, King’s College London

Project team: Kritika Samsi, Jill Manthorpe, Laura Cole and Katharine Orellana

Funding information: Alzheimer’s Society (Grant ref 458)

Project summary:

This 2-year study (ending 31 Jan 2021) is investigating the use of ‘residential respite’ services (e.g. a short stay in a care home) which provide a break for both people with dementia and their carers.

Qualitative interviews are being undertaken with people with dementia and carers covering the use, take up and experiences of residential respite, including possible barriers to uptake, or the views of those who have chosen not to use residential respite even if available and affordable. Since the study was originally approved, further questions in relation to the context of Covid-19 have been added. We are asking interviewees about views on whether residential respite will be offered and acceptable in the future and what these may look like, as well as any alternative plans they have made for future lockdowns or local outbreaks. We are also seeking the views of Stakeholders regarding changes to residential respite provision within the context of Covid-19. For more information, see https://www.kcl.ac.uk/scwru/res/capacity/respite

Outputs:

2021

Project website:https://www.kcl.ac.uk/scwru/res/capacity/respite https://kclpure.kcl.ac.uk/portal/en/projects/taking-a-break-use-of-residential-respite-by-people-with-dementia-and-carers-experiences-access-outcomes(1916b831-03d7-4a0a-be5c-6bf52b941b04).html

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The COVID-19 outbreak in the nursing home sector – does ownership matter?Ongoing

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Contact: Florien Kruse https://betaalbaarheidvanzorg.nl/en/about

Host institution: Radboud Medical Centre, IQ healthcare

Project team: Amy Hsu (Canada) Marcello Marciano (England) Stephen Allan (England) Elizabeth Lemmon (Scotland) David Bell (Scotland) Maria Aurora Fenech (Malta) Sara Charlesworth (Australia) Patrick Jeurissen (The Netherlands) Adelina Comas-Herrera

Funding information: Not funded

Project summary:

This research project focuses on whether ownership is relevant to the severity of COVID-19 outbreaks in the nursing home sector. It carries the title ‘The COVID-19 outbreak in the nursing home sector – does ownership matter?’

This research consists of (at least) two parts. Firstly, it will provide a rapid review of the evidence available on this topic. Secondly, this project will follow a case-study approach to embed the findings in their respective national context. This part of the research project will be our main contribution. We will use input from various countries (e.g. Canada and Australia) to draw conclusions. If there is sufficient data, we will analyse the relationship between the composition of the long-term care sector (i.e. for-profit providers’ share of total beds in nursing homes and/or number of homes) and the share of COVID-19 deaths in the long-term care sector across different countries.

Outputs:

January/February 2021

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The effect of COVID-19 related care home closures on family members, residents, and staff (UK)Ongoing

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Contact: Clarissa Giebel https://www.liverpool.ac.uk/population-health-sciences/staff/clarissa-giebel/

Host institution: University of Liverpool

Project team: Clarissa Giebel

Funding information: NIHR ARC NWC and The Geoffrey and Pauline Martin Trust

Project summary:

Our qualitative interview study aims to explore the experiences of family carers whose loved ones with dementia reside in a care home, and the experiences of care home staff of providing care during the pandemic. We are aiming to recruit around 20 family carers and 20 care home staff across the UK, and our study will be completing data collection in November 2020.

Outputs:

Early 2021

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The experience of family carers and keeping in regular contact with loved ones who permanently live in a care home during the COVID-19 Pandemic: A UK perspectiveOngoing

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Contact: Kathryn Hinsliff-Smith https://www.dmu.ac.uk/research/centres-institutes/ihhpsc/index.aspx

Host institution: De Montfort University, Leicester, UK.

Project team: Dr Kathryn Hinsliff-Smith, Dr Sarah Griffiths, Professor Kay de Vries, Professor Jayne Brown

Funding information: no external funding

Project summary:

The aim of this COVID-19 related study is to explore the experiences for family who are unable to visit their relatives who permanently reside in a care home. This relates to ‘usual’ family visits as well as compassion visits that may be made at a time when end of life (EOL) procedures would be followed. We want to understand current interactions between family and their relatives living within a care home during the period of a UK-wide lockdown and continuing after care home visits are allowed by family.

It is proposed through the findings from this COVID-19 care home study to co-develop resources that facilitate good practice with practical messages of how family can be actively engaged in the continuing care of a loved one in a care home when restrictions may be in place. For example, this can occur when there is an outbreak of a more common infection and the care home is restricting visitors.

Methods: Qualitative ongoing virtual interviews with family carers

Outputs:

When outputs are expected: early 2021

Project website:https://www.dmu.ac.uk/research/centres-institutes/ihhpsc/project-information.aspx

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The impact of Covid-19 confinement and isolation measures on people with dementia: a rapid reviewOngoing

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Contact: Dr Aida Suarez Gonzalez https://iris.ucl.ac.uk/iris/browse/profile?upi=ASUAR45

Host institution: University College London

Project team: Jayeeta Rajagopalan, Dr Suvarna Alladi

Funding information:

Project summary:

This project aims to provide a rapid synthesis of published studies of mortality rates and incidence of COVID-19 among people living with dementia.

Research questions:

  1. What is the relationship between Covid-19 restrictions (including lockdown) and the cognitive, psychological and functional symptoms among people with dementia living in the community?
  2. What is the relationship between Covid-19 restrictions (including lockdown) and the cognitive, psychological and functional symptoms among people with dementia living in care homes?

We will follow PRISMA guidelines (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) for conducting the review and preparing the report. We developed search terms for three databases (Pubmed, PsychINFO and CINAHL) to identify all studies reporting primary data on the effect of COVID-19 isolation and confinement measures on people living with dementia. Included studies are in English language only and will be critically appraised using the Joanna Briggs critical appraisal tools. All study designs will be considered for inclusion. We extracted information related to cognitive measures, psychological symptom, activities of daily living and changes in medication (primary outcome measures) along with tools used to measure symptoms, setting where the study is conducted (e.g. community, day clinic, care home), sample size and dementia type (when reported) of participants. Evidence will be synthesized narratively.

Outputs:

This rapid review is expected to be completed by January 2020 and submitted to https://www.medrxiv.org/ before final submission to a peer-review journal

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The impact of Covid-19 related public health strategies on the lives of older people living in Uganda Ongoing

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Contact: Clarissa Giebel https://www.liverpool.ac.uk/population-health-sciences/staff/clarissa-giebel/

Host institution: University of Liverpool

Project team: Clarissa Giebel and Isaac Ddumba

Funding information: NIHR ARC NWC & University of Liverpool ODA SeedFund

Project summary:

This is a collaboration between Liverpool and the ARCAD in Uganda. The ARCAD is led by Dr Isaac Ddumba. In June 2020, researchers in Uganda conducted 30 semi-structured interviews with older adults (aged 60+) about their experiences of how public health measures have impacted on their lives. We have submitted the first paper which is currently undergoing review, and are hoping for the first findings to be published by Christmas. What already emerged early on from the interviews was the severe impact on the basic necessities of life that the pandemic is having.

Outputs:

Christmas 2020

Project website:

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The impact of isolation and quarantine on staff, family and residents living in aged care facilities during the COVID19 pandemicOngoing

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Contact: Dr Jackie Robinson https://unidirectory.auckland.ac.nz/profile/j-robinson

Host institution: School of Nursing, University of Auckland

Project team: Dr Jackie Robinson, Dr Michal Boyd and Professor Merryn Gott

Funding information: Performance Based Research Funding, University of Auckland

Project summary:

A three-phase concurrent exploratory mixed methods study to explore the impact of COV ID-19 related isolation and quarantine restrictions on staff, family and residents in one aged care facility. An analysis of interRAI data will be undertaken using assessments completed prior to, and after lock down restrictions were eased in order to identify changes in the interRAI domains related to resident’s health and wellbeing. Subsequent phases will undertake semi-structured interviews with residential care staff, family and residents on their experiences of isolation and quarantine restrictions and its impact on the health and wellbeing of residents.

Outputs:

Outcomes: data collection has been completed and findings are expected to be ready for publication by March 2021.

Project website:not available specifically for this project however this work sits with the School of Nursing’s Te Arai Palliative and End of Life Care Research Group https://tearairesearchgroup.org/

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The impact of the COVID-19 pandemic on people with learning disabilities and factors associated with better outcomesOngoing

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Contact: Chris Hatton (co-PI) Richard Hastings (co-PI) https://www.mmu.ac.uk/hpsc/our-staff/browse/department-of-social-care-and-social-work/profile/index.php?id=4867 and https://warwick.ac.uk/fac/soc/cedar/staff/rhastingsprofile/

Host institution: Department of Social Care and Social Work, Manchester Metropolitan University (Chris Hatton) Centre for Educational Development, Appraisal and Research, University of Warwick (Richard Hastings)

Project team: PIs: Prof Richard Hastings (University of Warwick) Prof Chris Hatton (Manchester Metropolitan University) Co-Is: Prof David Abbott (University of Bristol) Dr Stephen Beyer (Cardiff University) Dr Jill Bradshaw (University of Kent) Dr Nick Gore (University of Kent) Prof Pauline Heslop (University of Bristol) Prof Andrew Jahoda (University of Glasgow) Anna Marriott (National Development Team for Inclusion) Dr Katrina Scior (UCL) Dr Laurence Taggart (University of Ulster) Dr Stuart Todd (University of South Wales) Researchers: Dr Sue Caton (Manchester Metropolitan University Dr Samantha Flynn (University of Warwick) Dr Tom Bailey (University of Warwick) Dr Amanda Gilooly (University of Glasgow) Dr Roseann Maguire (University of Glasgow) Dr Edward Oloidi (University of South Wales) Dr Peter Mulhall (University of Ulster) Partner organisations: Learning Disability Wales All Wales Forum of Parents and Carers of People with Learning Disabilities Scottish Commission for Learning Disability Promoting A More Inclusive Society (PAMIS) Positive Futures Mencap Northern Ireland Learning Disability England PMLD Link

Funding information: UKRI-COVID-19 research programme

Project summary:

This project has three research questions:

  1. What are the wellbeing, health and social effects of the COVID-19 pandemic, including social restrictions and changes to how people are supported, on the lives of adults with learning disabilities across the UK over time?
  2. What actionable factors are associated with better outcomes for: a) people with mild/moderate learning disabilities; b) people with severe/profound learning disabilities?
  3. What urgent issues concerning people with learning disabilities are emerging over time?

Longitudinal data will be collected 3 times in the 12-month project (1 Sept 2020 to 31 Aug 2021) from two purposively sampled cohorts across the UK: 1,000 adults with mild/moderate learning disabilities (interviewed directly via telephone etc by research interviewers); and 500 adults with severe/profound learning disabilities (via online survey with carers). Core data will include wellbeing, health (including COVID-19), the impact of COVID-19 on wellbeing, lifestyle and finances, living circumstances, and changes in support received. Additional questions at any wave will be determined by the process outlined below.

These surveys will take place within three repeated cycles:

Step 1: Collaborating organisations and policy-makers across the UK bring forward urgent issues, and select with researchers additional questions for the next survey wave

Step 2: Surveys are conducted

Step 3: Survey results are rapidly analysed, shared with policy-makers, and disseminated in multiple (including accessible) formats.

Outputs:

Short reports, blogposts and other summaries of urgent issues and interim findings will be produced throughout the blogpost, with the first set of findings due in February 2021. Peer-reviewed publications will be submitted starting in March 2021.

Project website:https://warwick.ac.uk/fac/soc/cedar/covid19-learningdisability

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The impacts of COVID-19 public health measures on people living with dementia in the community and unpaid carers – An international 5-country study (Australia, India, Italy, Poland and UK)Ongoing

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Contact: Clarissa Giebel https://www.liverpool.ac.uk/population-health-sciences/staff/clarissa-giebel/

Host institution: University of Liverpool

Project team: Clarissa Giebel

Funding information: NIHR ARC NWC

Project summary:

Led by the UK, we are collecting qualitative and quantitative data on the experiences of public health measures on the lives of people living with dementia and unpaid carers in the UK, Australia, Poland, Italy, and India. This involve telephone semi-structured interviews with up to 25 participants in each country, as well as follow-up interviews in the UK and Australia. These findings are complemented by an online and telephone survey. This study will provide the very first international comparative analysis of the impacts of the pandemic on dementia.

Outputs:

Early Spring 2021

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Understanding and addressing the mental health of older adults in Colombia: The impact of stressful life eventsOngoing

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Contact: Clarissa Giebel https://www.liverpool.ac.uk/population-health-sciences/staff/clarissa-giebel/

Host institution: University of Liverpool

Project team: Dr Clarissa Giebel (PI), Prof Mark Gabbay, Dr Frances Darlington-Pollock, Dr Ross White, Prof Siobhan Reilly, and Colombian Team members: Prof Maria Isabel Zuluaga, Prof Gabriel Saldarriaga

Funding information: UKRI ESRC Newton Fund, NIHR ARC NWC

Project summary:

Colombia has suffered political violence since the 1950s notably la violencia, more recently drug cartel and migrant flows linked. These severely impact citizens. Colombians are now being affected by the global COVID-19 pandemic. It remains unclear how these events are affecting residents’ mental health and wellbeing, particularly older adults.

The proportion of Colombian older adults is expected to double from 10% to 20% by 2050. This rise increasingly impacting upon Colombians, particularly in regions like Urabá in the Department of Antioquia, that have suffered throughout their history from inequality and lack of development due to inattention from the state and the constant presence of prolonged political conflict that deepens these structural inequalities. Those over 60 years of age have witnessed the history of violence in the country, as victims or perpetrators (for those who were part of armed groups). These account for a complex understanding of the conflict and turn them into the advocates for peace, as they have witnessed the dire consequences of war -they have suffered and survived them. In this sense, the elderly in Colombia are the ones who weave the life-story memories of the conflict, but suffer consequences.

Our research centres on the municipality of Turbo, typical of such regions and populations. Uraba Antioqueno has been one of the territories most affected by the Colombian armed conflict in the last six decades. It is considered one of the regions of the Department of Antioquia with the highest numbers of expulsion of people for reasons related to the armed conflict or violence, though at the same time it is one of the main receiving areas for victims from Choco in the Pacific region and the Atlantic coast, as well as the migratory transit of foreigners from Africa and Latin America who seek reaching the United States. In 2020 413,397 inhabitants (78.6% of the total regional population of 525,685) were registered as victims of the armed conflict. In Turbo, the proportion is 64.5% (83,993 victims). In the region, 9.7% (n=14,425) are classed as older adults, living in urban, rural, peri-urban and dispersed rural areas.

Our proposal embeds co-production with public and professional advisors throughout. We have already been undertaking consultations with local older residents and professionals in determining the approach and designing the project.

This proposal will collect and combine key existing datasets added to new information collected using mental health surveys and both individual interviews and focus groups to map the mental health condition and pressures on older adults, suffering from decades of conflict and now COVID19. These findings will link with a systematic review of interventions to support the mental health of older adults in lower and middle income countries (LMICs), with a particular focus on conflict survivors, linked to in-depth interviews with international academic experts.

The evidence summary, combined with quantitative and qualitative data from Turbo will be used to co-design and test a community-based psychosocial care strategy and intervention with, and for, Turbo older residents to reduce and manage mental health problems. It will address the situations identified at family and community levels in the Turbo research phases, linking with different regional health and welfare systems and datasets.

This will then be evaluated as a pilot for its cost effectiveness, impact on mental health and other key factors as well as acceptability to professionals and service users. The findings will be used to inform a larger formal trial grant application across wider populations; as well as guides to implementing the approach more widely to support its application across other populations, within Colombia and other LMICs; as well as higher income countries, starting with England, with a focus on addressing the mental health needs of migrants who have experienced conflict.

Project announcement: Supporting older adults’ mental health in conflict-riven regions of Colombia – News – University of Liverpool

Outputs:

Study running 1st Feb 2021 – 31st January 2024, outputs expected throughout

Project website:

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Understanding contributors to quality of care in long-term care and changes under conditions related to the COVID-19 pandemic (Canada)Ongoing

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Contact: Sara Luck, BAScH Honours student, under the supervision of Dr. Katie Aubrecht, Canada Research Chair Health Equity & Social Justice

Host institution: Spatializing Care: Intersectional Disability Studies Lab, St. Francis Xavier University

Project team: Sara Luck, Katie Aubrecht

Funding information: Canada Research Chairs Program Research Stipend

Project summary:

This research study investigates the impact of COVID-19 on quality of care in residential long-term care (LTC) in New Brunswick, Canada using a qualitative description design to explore what contributes to quality of care for residents living in long-term care, and how this could change in times of crisis from the perspective of long-term care staff. Interviews were conducted with a broad range of staff at one LTC home. A semi-structured interview guide and approach to thematic analysis was framed by a social ecological perspective, making it possible to include the individual and proximal social influences as well as community, organizations, and policy influencers. The learnings and insights gained will improve the understanding of quality of care, as well as potential barriers and facilitators to care during times of crisis within rural Atlantic Canada.

Outputs:

When are March 2021

Project website:https://www2.mystfx.ca/sociology/spatializing-care-lab

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Understanding how COVID-19 shapes the costs and consequences of providing unpaid care for people with dementia: Part of the Strengthening responses to dementia in developing countries (STRiDE) ProjectOngoing

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Contact: Emily Freeman https://www.lse.ac.uk/cpec

Host institution: London School of Economics and Political Science

Project team: Mariana López-Ortega, Rosa Ma. Farrés (Mexico), Suvarna Alladi, Saadiya Hurzuk, Meera Pattabiraman Jayeeta Rajagopalan, Narendhar Ramasamy, Priya Thomas (India), Rochelle Amour, Ishtar Govia, Janelle Robinson, Marissa Stubbs (Jamaica), Emily Freeman, Martin Knapp, Adelina Comas-Herrera (UK)

Funding information: UK Research and Innovation Global Challenges Research Fund (ES/P010938/1)

Project summary:

Part of the wider Strengthening responses to dementia in developing countries (STRiDE) project, this sub-study aims to explore the financial, social and health costs and consequences of providing unpaid care for people with dementia in India, Jamaica, and Mexico. We use highly inductive qualitative interviewing to understand the complexities in caregiving experienced by people who care, or have cared, in each setting. In March 2020 we suspended in-person fieldwork in light of the global COVID-19 pandemic and sought to adapt our methodology.

The pandemic presents a period of potential crisis for people providing unpaid long term care. It is likely that some people caring for those with dementia, as well as those they care for, will contract the virus. Moreover, it is likely that a period of complete or reduced face-to-face contact within social networks, reduced availability of services and restrictions on economic activities will affect caregivers’ experiences of providing care. Should either the pandemic, or national and local responses to the pandemic, significantly affect participants’ daily lives, this period is likely to highlight and possibly exacerbate inequities in whether and how providing unpaid care to a family member with dementia presents a burden to caregivers. Data about COVID-19 experiences are likely to help us better understand the broader costs and consequences of providing unpaid dementia care, as well as the impact of response measures on caregivers during the pandemic and the legacy of additional care and support needs that these responses may generate and that will need to be addressed when in-person services resume.

To this end, discussion of COVID-19 experiences will be a key part of a full programme of remote in depth interviews with caregivers in India, commencing February 2021. In Mexico, a series of short ‘check in’ calls with existing participants over the second half of 2020 is being complemented by extended discussion of COVID-19 as part of remote in depth interviews with existing and new participants that began in December 2020. In Jamaica, a longer series of repeated short ‘check in’ calls with caregivers interviewed pre-March 2020 are helping us to generate observational data on COVID-19 experiences and shape plans for further generation of remote in depth interview data later in 2021.

Outputs:

Outputs are expected beginning December 2021.

See the pdf file below for a presentation outlining research questions and methods: The costs and consequences of providing unpaid
care to people living with dementia in middle-income
countries

Project website:https://stride-dementia.org

File 1:Freeman-E._Unpaid-Care_ADI-December-2020.pdf (254.4 KB)

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Visit-id: a study of care home visiting arrangements during Covid-19Ongoing

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Contact: Josie Dixon https://www.lse.ac.uk/cpec/people/josie-dixon

Host institution: Care Policy and Evaluation Centre (CPEC), London School of Economics and Political Science (LSE)

Project team: Josie Dixon (CPEC, LSE) Klara Lorenz-Dant (CPEC, LSE) Margaret Dangoor (CPEC, LSE) Research Officer (CPEC, LSE, to be appointed) Sarah Russell (independent researcher/ expert) Daniel Casson (Care England) Martin Knapp (CPEC, LSE)

Funding information: National Institute for Health Research (NIHR), Policy Research Programme (PRP) - Recovery, Renewal, Reset: Research to inform policy responses to COVID-19 in the health and social care systems. Grant number: NIHR202482

Project summary:

Project summary

Visit-id: a study of care home visiting arrangements during Covid-19 is being conducted by a team from the Care Policy and Evaluation Centre (CPEC), London School of Economics and Political Science, led by Josie Dixon with Klara Lorenz-Dant, Margaret Dangoor and a researcher to be appointed, in collaboration with Sarah Russell, independent researcher/ expert, and Daniel Casson and his colleagues at Care England.

It is funded by the National Institute for Health Research (NIHR), Policy Research Programme as part of it’s Recovery, Renewal, Reset: Research to inform policy responses to COVID-19 in the health and social care systems funding call. It will run from January 2021 – April 2022 and is supported by a steering group involving senior representatives from Dementia UK, Alzheimer’s Society, Healthwatch, Carers UK, HC-One, Care England, Jewish Care, Freemantle Trust and Sheffield CCG and by a reference group of five experts-by-experience.

The study will examine how care homes in England have developed and implemented their visiting policies during the COVID-19 pandemic, and the factors that shape this. In particular, the study will identify range and diversity across care homes in:

  • the content of visiting policies
  • how visiting policies were developed
  • how Government guidance on care home visiting has been interpreted and implemented
  • how and to what degree scope in Government guidance for policies to take account of individual residents’ needs has been reflected in visiting policies
  • the use of other support (e.g. non-Government guidance, practical tools, professional assistance) to develop and implement policies, and the role of local authority, or other local, advice and requirements
  • in what ways the views and perspectives of residents, families and others have been taken into account when developing policies
  • how policies have been communicated to residents, families and others, including what has worked well and less well
  • experiences of implementing visiting policies, including views on the workability of policies; the acceptability of policies to residents, families and staff; and any equity or other impacts

 

Throughout, the researchers will identify the varied opportunities and challenges facing care homes in developing and implementing their policies, and identify aspects that have worked well and less well. Importantly, they will also identify the characteristics and circumstances of care homes, and other contextual factors, that have helped to shape care homes’ different approaches and experiences.

Methods:

Stage 1: 200 care home managers (or a nominated senior member of staff) will complete an online questionnaire with ten questions inviting brief narrative answers (approximately 20-30 minutes to complete). We will also ask respondents to supply us with their written visiting policy, where they have one. Where relevant, questions about developing visiting policies will be directed to care home organisation managers.

Stage 2: In-depth interviews with senior staff in around 20 care homes/ care home organisations to further explore issues emerging from the survey.

Stage 3: In the final stage of the project we will speak to around 30 family carers of people living in care homes (recruited separately) to learn about their experiences and views of care home visiting policies.

Outputs:

To share our findings, we will produce a range of policy briefings, academic journal papers, blogs and webinars.

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What is the evidence for how and what communication methods are used between family carers, residents and care homes either during an enforced lock down or at usual times of operating? (UK)Ongoing

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Contact: Kathryn Hinsliff-Smith https://www.dmu.ac.uk/research/centres-institutes/ihhpsc/index.aspx

Host institution: De Montfort University, Leicester, UK

Project team: Dr Kathryn Hinsliff-Smith, Dr Sarah Griffiths, Professor Jayne Brown and from The University of Leeds Dr Reena Devi and Dr Alys Griffiths

Funding information: no external funding

Project summary:

Rapid review to gather evidence for the ways in which care homes have arranged communication between themselves, residents and family carers. This may be at a time of enforced closure, such as due to the SARs virus or C-19 or reporting empirical work which has been undertaken to explore use of different approaches such as use of technology (SMART phones, iPad, Facebook Portal).

It is proposed that the findings of this review will highlight good practice which could be implemented within the current restrictions to care homes across the globe but also for ‘distance’ carers across all age spectrums and different types of care settings, i.e. facilities for older people, learning disability, respite and short-term care provision.

Methods: Rapid review of empirical published studies

Outputs:

When are early 2021, pre print 2020

Project website:https://www.dmu.ac.uk/research/centres-institutes/ihhpsc/project-information.aspx

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Alzheimer's Disease and Related Disorders Treatment and Outcomes in America: Changing Policies and Systems [Administrative Supplement]Complete

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Contact: Vincent Mor, Elizabeth White https://www.brown.edu/academics/public-health/cghr/

Host institution: Brown University School of Public Health, Center for Gerontology and Healthcare Research Genesis HealthCare

Project team: Brown University: Vincent Mor (PI), Elizabeth White, Stefan Gravenstein, Cyrus Kosar, Orestis Panagiotou, Kevin McConeghy, Jeffrey Hiris, Yoojin Lee, Christopher Santostefano, Xiaofei Yang Genesis HealthCare: Richard Feifer, Carolyn Blackman, Richard Castor, Clifford Boyd, Denine Hastings

Funding information: National Institute on Aging, 3P01AG027296-11S1

Project summary:

The objective of this administrative supplement is to examine the impact of COVID-19 in US nursing homes, understand its treatment and outcomes in this setting, and identify organizational characteristics that may mitigate or fuel spread of the infection among staff and residents. This is a collaborative partnership between Genesis HealthCare, the largest long-term care provider in the US, and Brown University. To date, we have examined facility and county predictors of outbreak, individual patient risk factors for mortality and other outcomes, mortality trends, symptom presentation, prevalence of asymptomatic and pre-symptomatic infection, and SARS-CoV-2 antibody development in this population. Other analyses are currently underway focused on post-acute care, functional recovery, sensitivity and specificity of SARS-CoV-2 antigen tests, medication management, and COVID-19 outcomes among individuals with chronic kidney disease.

Outputs:

Several papers already published, others under review and in development for publication in late 2020-mid 2021:

White, E.M., Kosar, C.M., Feifer, R.A., Blackman, C., Gravenstein, S., Ouslander, J., & Mor, V. Variation in SARS-CoV-2 Prevalence in US Skilled Nursing Facilities. J Am Geriatr Soc. 2020; 68(10): 2167-2173. DOI: 10.1111/jgs.16752

White, E.M., Santostefano, C.M., Feifer, R.A., Kosar, C.M., Blackman, C., Gravenstein, S. & Mor, V. Asymptomatic and pre-symptomatic SARS-CoV-2 infection rates in a multistate sample of skilled nursing facilities. JAMA Intern Med. 2020 Oct. [Advanced online publication]. DOI: 10.1001/jamainternmed.2020.5664

Blackman, C., Farber, S., Feifer, R.A., Mor, V., & White, E.M. An Illustration of SARS-CoV-2 Dissemination Within a Skilled Nursing Facility Using Heat Maps. J Am Geriatr Soc. 2020; 68(10): 2174-2178. DOI: 10.1111/jgs.16642

McConeghy, K.W., White, E.M., Panagiotou, O.A., Santostefano, C.M., Halladay, C., Feifer, R.A., Blackman, C., Rudolph, J.L., Mor, V. & Gravenstein, S. (2020). Temperature Screening for SARS‐CoV‐2 in Nursing Homes: Evidence from Two National Cohorts. J Am Geriatr Soc. 2020. [Advanced online publication]. DOI: 10.1111/jgs.16876

Panagiotou, O.A., Kosar, C.M., White, E.M., Santostefano, C.M., Feifer, R.A., Blackman, C., Rudolph, J.L., Gravenstein, S., Mor, V. Risk Factors Associated with All-Cause 30-Day Mortality in Nursing Home Residents with COVID-19. JAMA Intern Med. 2020. [In press]

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Caring behind closed doorsComplete

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Contact: Rachael Graham https://www.carersuk.org

Host institution: Carers UK

Project team: Emily Holzhausen, Rachael Graham, Ruby Peacock, John Perryman, Ben Hall and Christine Casely

Funding information: Carers UK

Project summary:

Carers UK’s ‘Caring Behind Closed Doors’ work involved two online surveys in Spring and Autumn 2020, with 5,047 and 5,904 respondents respectively, designed to capture and draw attention to the impact of the COVID-19 pandemic on unpaid carers across the UK. The first survey focused on the initial ways in which the pandemic affected carers’ lives (for example increased costs, difficulties accessing supplies), whereas the six months on report was able to reflect on the ongoing impact on mental and physical health and carers’ needs for support during the approaching winter months.

Outputs:

Already available (report 1 was published in April 2020, report 2 published October 2020).
Report 1 – Caring Behind Closed Doors (April 2020) – https://www.carersuk.org/for-professionals/policy/policy-library/caring-behind-closed-doors-report | Report 2 – Caring Behind Closed Doors, Six Months On (October 2020) – https://www.carersuk.org/for-professionals/policy/policy-library/caring-behind-closed-doors-six-months-on

Project website:https://www.carersuk.org/for-professionals/policy/policy-library/caring-behind-closed-doors-six-months-on

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Caring for Washington’s older adults in the COVID-19 pandemic: Interviews with organization leaders about the state of social and healthcare services.Complete

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Contact: Clara Berridge http://hdl.handle.net/1773/46272

Host institution: University of Washington, Seattle

Project team: Berridge, C., Parsey, C.M., Ramirez, M., Freitag, C., Johnson, I.M., Allard, S.W.

Funding information: This study was funded by the University of Washington Population Health Initiative’s COVID-19 Economic Recovery Research Grant, along with matching funds from the University of Washington School of Public Health, School of Social Work, and School of Medicine, Department of Neurology.

Project summary:

An interdisciplinary team of aging researchers at the University of Washington released a new report, “Caring for Washington’s older adults in the COVID-19 pandemic: Interviews with organization leaders about the state of social and healthcare services.”

Drawing on interviews with 45 senior leaders of social services and health care organizations serving older adults, this report identifies current challenges confronting service delivery and client care, as well as those that will persist to shape future strategy and planning. Organization senior leaders are most concerned about people living with dementia, those with low-incomes, those who are living alone or unhoused, Latinx immigrant and migrant older adults, people with limited English proficiency, and tribal elders. Several key findings and themes emerge relevant to policy and practice. Themes discussed include:

-intensified social isolation and the digital divide

-creative and promising adaptations

-observed negative health impacts

-staffing reductions and shortages

-urgent fiscal shortfalls and organizational needs

Read the press release

Outputs:

Public report: Berridge, C., Parsey, C.M., Ramirez, M., Freitag, C., Johnson, I.M., Allard, S.W. (October, 12, 2020). Caring for Washington’s older adults in the COVID-19 pandemic: Interviews with organization leaders about the state of social and healthcare services.

Project website:http://hdl.handle.net/1773/46272

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Challenges of COVID-19 in long-term care facilities for older adults in Hispano-American countries (Brazil ,Chile)Complete

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Contact: Patrick Alexander Wachholz https://www.fmb.unesp.br/#!/ensino/pos-graduacao/mestrado-academico-e-doutorado/programas-de-pos-graduacao/pgpesquisaclinica/

Host institution: Professional Master´s degree in Clinical Research centre, Medical School (FMB) of São Paulo State University (Unesp), Botucatu Campus

Project team: Patrick A. Wachholz (Unesp), Alessandro Ferrari Jacinto (UNIFESP), Ruth Caldeira de Melo (USP), José Luis Dinamarca-Montecinos (Universidad de Valparaíso, Chile),Paulo J.F. Villas Boas (Unesp)

Funding information:

Project summary:

This pilot study aimed to describe the preparedness of Hispano-American care homes managers to face the COVID-19 pandemic. This cross-sectional study was based on the application of an online survey adopting WHO IPC guidance. Descriptive statistics were used to summarize the data.

Outputs:

A preprint is available at https://doi.org/10.1590/SciELOPreprints.986 . The paper was accepted and will be published soon in Geriatrics, Gerontology and Aging ( https://www.ggaging.com )

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COVID 70+ HOPE: nursing HOme pandemic preparedness and its effects on safety culture and well-being of PErsonnel (Portugal)Complete

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Contact: Óscar Brito Fernandes

Host institution: Algarve Biomedical Center

Project team: Óscar Brito Fernandes, Pedro Lobo Julião, Nuno Marques, Niek Klazinga, Dionne Kringos

Funding information: The study was funded by the Algarve Biomedical Center. The participation of OBF, NK, and Dk occurred in the scope of a Marie Skłodowska-Curie Innovative Training Network (HealthPros — Healthcare Performance Intelligence Professionals) that has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement Nr. 765141 (https://healthpros-h2020.eu).

Project summary:

Study setting: Nursing homes in two regions of Portugal (Algarve and Alentejo) (April–July 2020)

Description: We examined nursing home Covid-19 preparedness and the personnel’s perceived safety, including nursing home resident safety culture, in two regions of Portugal; we also sought to understand differences among nursing homes in those two regions. We followed a two-stage voluntary-based engagement with nursing homes: first, nursing homes self-assessed their Covid-19 preparedness using a checklist (n=138); and second, a follow-up video/phone call with a nursing home for a checklist walkthrough discussion (n=83). Later, when residents and workers in nursing homes of both regions were tested for Covid-19, a web-based, self-administered survey was conducted among personnel (n=720). We used descriptive statistics to characterize attributes of participating nursing homes and survey respondents, and to examine missing data patterns. We summarized the Covid-19 preparedness with the geometric mean across facilities on the compliance within each larger group of items in the checklist. We synthesized data from open-ended questions (both from the checklist and follow-up calls) into major categories to capture insights from the facilities’ contributions. We assessed correlations and performed an exploratory principal axis factor analysis on a 10-item question in the first module of the survey. Composite response frequencies relative to the personnel’s resident safety culture were computed by averaging positive, negative and neutral responses.

Outputs:

Study concluded, submission to peer-review journal by December 2020.

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Estimates of the rate of infection and mortality by COVID-19 in care homes for older people in BrazilComplete

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Contact: Patrick Alexander Wachholz https://www.fmb.unesp.br/#!/ensino/pos-graduacao/mestrado-academico-e-doutorado/programas-de-pos-graduacao/pgpesquisaclinica/

Host institution: Professional Master´s degree in Clinical Research centre, Medical School (FMB) of São Paulo State University (Unesp), Botucatu Campus

Project team: Patrick A. Wachholz (Unesp), Virgilio Garcia Moreira (UERJ), Déborah Oliveira (UNIFESP), Helena Akemi Wada Watanabe (USP), Paulo J.F. Villas Boas (Unesp)

Funding information:

Project summary:

Aims: This study aimed to describe the infection and mortality rates related to COVID-19 in older people living in Brazilian care homes.

Methods : A cross-sectional and descriptive study was conducted using primary and secondary data sources. Nationwide care home administrators were invited to report the occurrence of infection and mortality related to COVID-19 infection from April to August 2020 using an online questionnaire. State Public Prosecutor Offices, State Health Departments, and the Unified Social Assistance System were also contacted for information. Data analysis involved descriptive statistics.

Outputs:

A preprint (1st version) is available at https://doi.org/10.1590/SciELOPreprints.1032, this paper was accepted and will be published soon in Geriatrics, Gerontology and Aging (www.ggaging.com). Versions were published in LTCcovid. see: https://ltccovid.org/2020/09/14/updated-report-covid-19-situation-in-brazilian-care-homes-and-actions-taken-to-mitigate-infection-and-reduce-mortality/

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Excess mortality for care home residents during the first 23 weeks of the COVID-19 pandemic in England: a national cohort studyComplete

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Contact: Marcello Morciano https://www.research.manchester.ac.uk/portal/marcello.morciano.html

Host institution: The University of Manchester, UK

Project team: Jonathan Stokes, Alex J Turner, Sharvari Patwardhan, Ian Hall, Evangelos Kontopantelis

Funding information: Part-funded by the National Institute for Health Research (NIHR) Applied Research Collaboration for Greater Manchester; the NIHR School for Primary Care Research (SPCR-2014-10043, grant ref no. 474); the NIHR Policy Research Unit in Health and Social Care Systems and Commissioning (PRUComm, PR-PRU-1217-20801); (JS is additionally supported by an MRC Fellowship (MR/T027517/1)). IH is Principal Investigator of the NIHR Policy Research Programme in Operational Research for Emergency Response Analysis (OPERA, PR-R17-0916-21001).

Project summary:

We use nationally representative administrative data from all care homes in England to estimate overall excess deaths and by care home characteristics: setting type (nursing or residential home), client types (offering services for people aged 65+ and/or people with dementia or offering services to children and adults), ownership status (whether not-for-profit – charity/NHS/LA-run homes – or for-profit), whether known to be affiliated to a large provider/brand or independent, and classification according to their registered maximum bed capacity (small, medium and large).

Project website:https://www.research.manchester.ac.uk/portal/en/researchers/marcello-morciano(f4952779-6cc5-496d-a181-351ff636e1be)/activities.html , https://www.arc-gm.nihr.ac.uk/projects/care-home-marketplace-GM )

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Experiences and needs of caregivers of persons with dementia during the COVID-19 pandemic and lockdown in a city in IndiaComplete

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Contact: Sridhar Vaitheswaran https://www.dementiaindia.org

Host institution: Schizophrenia Research Foundation (SCARF) India https://www.scarfindia.org

Project team: Dr. Sridhar Vaitheswaran, Miss. Monisha Lakshminarayanan, Dr. Vaishnavi Ramanujam, Dr. Subashini Sargunan, Miss. Shreenila Venkatesan

Funding information:

Project summary:

Objective: To describe the experiences and needs of caregivers of persons with dementia during the COVID-19 pandemic and lockdown in a city in India.

Design: Qualitative study using a telephonic semistructured interview.
Setting: A specialist geriatric outpatient mental health service based in a non-governmental organization in Chennai, India.

Participants: A purposive sampling of family members of persons with dementia registered in the database and seen within the previous 6 months.

Findings: Thirty-one caregivers participated. Thematic analysis of the data showed two sets of issues that the caregivers of persons with dementia faced in their experiences during the pandemic. The first set was unique to the caregivers that directly related to their caregiving role, while the second set did not relate directly to their caregiving role. These two sets also appeared to have a two-way interaction influencing each other. These issues generated needs, some of which required immediate support while others required longer-term support. The caregivers suggested several methods, such as use of video-consultations, telephone-based support and clinic-based in-person visits to meet their needs. They also wanted more services postpandemic. Conclusion: Caregivers of persons with dementia had multiple needs during the pandemic. Supporting them during these times require a pragmatic multilayered approach. Systemic changes, policies and frameworks, increased awareness, use of technology, and better access to health are necessary.

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Facing COVID-19: Live-in Care in Central EuropeComplete

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Contact: Michael Leiblfinger

Host institution: Johannes Kepler University (AT), Charles University (CZ), Hungarian Demographic Research Institute (HU), HEKATE Conscious Ageing Foundation (HU)

Project team: Brigitte Aulenbacher, Petra Ezzeddine, Charles University, Dóra Gábriel, Michael Leiblfinger, Kinga Milankovics, Veronika Prieler

Funding information: Brigitte Aulenbacher (lead), Michael Leiblfinger, and Veronika Prieler are the Austrian members of the trinational research project Decent Care Work? Transnational Home Care Arrangements (http://decentcarework.net), funded by the Austrian Science Fund FWF (I 3145 G-29).

Project summary:

During the pandemic, working conditions in receiving and sending countries have been further undermined. Facing worse conditions in their home countries, migrant workers nonetheless have been pushed to accept jobs offered abroad despite potential health and other risks and restrictions during the pandemic. The cross-border care labor market is often portrayed as a win-win one, in which older people receive affordable care and migrants a job paying more than alternatives at home. In fact, this Central European care market creates a scheme of nationality-based structural inequalities, transnational exploitation of workforce, and exclusion amidst a myth of an egalitarian and integrated Europe. Although the fragility of live-in care was given new attention by the pandemic, care workers’ and receivers’ wants and needs were either not addressed, or addressed insufficiently or unevenly. People in need of care and their relatives faced a lack of public support and anxiety because of closed borders. While many measures aimed to ensure the continuation of live-in care, workers’ living and working conditions that were precarious even before the pandemic remained ignored. Because of social distancing – also between care receivers and their relatives –, carers faced increased workloads and isolation. Transnational travel brought the risk of contagion and/or (unpaid) quarantine. Care workers stuck in their home countries faced financial deprivation. And despite discourses about their systemic relevance, care workers were presented as a threat to public health and national labor markets. The social and financial burden of the pandemic thus ended up falling on the shoulders of circular migrants.

Outputs:

Project website:https://globaldialogue.isa-sociology.org/facing-covid-19-live-in-care-in-central-europe/

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Health and social care workers’ quality of working life and coping while working during the Covid-19 pandemic: A three phase studyComplete

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Contact: Paula McFadden https://www.ulster.ac.uk/staff/p-mcfadden

Host institution: School of Applied Social and Policy Sciences, Ulster University, Northern Ireland

Project team: Paula McFadden (Ulster University), Patricia Gillen (Ulster University), John Mallet (Ulster University), Heike Schroder (Queen’s University Belfast), John Moriarty (Queen’s University Belfast), Jill Manthorpe (King’s College London), Jermaine Ravalier (Bath Spa University), Denise Currie (Queen’s University Belfast), Jana Ross (Ulster University)

Funding information: Northern Ireland Social Care Council, Southern Health and Social Care Trust, NIHR Policy Research Programme grant, Public Health Agency HSC R&D Division

Project summary:

The study aims to explore the impact of providing health and social care during the Covid-19 pandemic on nurses, midwives, allied health professionals, social care workers and social workers in the UK. The study uses a cross-sectional design to collect data from a convenience sample of nurses, midwives, allied health professionals, social care workers and social workers over three time points: May – July 2020, November 2020 – January 2021, and May – July 2021. Data is collected using a self-report online survey consisting of demographic questions, measures of wellbeing, work-related quality of life, coping and several open-ended qualitative questions. Survey data will be supplemented with data gathered through focus group discussions with frontline workers and their managers/regulators.

Outputs:

Phase 1 findings were published in October 2020, phase 2 findings are expected in April-May 2021 and phase 3 findings are expected in September-October 2021

Project website:Phase 1 full report: HSC C19 Workforce Report May_with cover.pdf and phase 1 executive summary: Workforce Survey Exec Sum May_with cover.pdf

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Health inequalities in the care pathways for people living with young- and late-onset dementia in LiverpoolComplete

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Contact: Clarissa Giebel

Host institution: University of Liverpool

Project team: Dr Clarissa Giebel; Dr Frances Darlington-Pollock; Prof Mark Gabbay; Caroline Sutcliffe; Dr Mark A Green; Dr Asan Akpan; James Watson; Julie Dickinson

Funding information: People with dementia need easy access to a number of post-diagnostic support services. This includes accessing support groups, paid carers, hot meals delivered to the home, or going to day care centres. However, these can be difficult to access depending on whether they come from a more disadvantaged or more affluent background. Specifically, little is known about the individual care pathways of what and when people with dementia access both in terms of dementia-specific services and general health care services, such as going to see their doctor or going to the hospital. Therefore, the aim of this study is to explore the experiences of people with young-onset dementia and late-onset dementia living in the community in Liverpool on their care pathways, and whether they are experiencing any health inequalities in accessing health care services.

Project summary:

We conducted 15 interviews, some with family carers, some with people living with dementia, and some with both, between January 2020 and May 2020. Four themes emerged from the interviews: (1) Getting the ball rolling: the process of diagnosis; (2) Balancing the support needs of people with dementia and carers; (3) Barriers to accessing support; and (4) Facilitators to accessing support. Inequities existed for both YOD and LOD, with emerging evidence of unequal experiences in accessing care at the beginning of the COVID-19 pandemic. People with YOD and LOD and their carers require better support in accessing services after a diagnosis. Greater understanding of the pathways through which inequalities materialise are needed, especially those that might have been disrupted or exacerbated by the COVID19 pandemic.

Outputs:

Giebel C, Sutcliffe C, Darlington-Pollock F, Green MA, Akpan A, Dickinson J, Watson J, Gabbay M. Health Inequities in the Care Pathways for People Living with Young- and Late-Onset Dementia: From Pre-COVID-19 to Early Pandemic. International Journal of Environmental Research and Public Health. 2021; 18(2):686. https://www.mdpi.com/1660-4601/18/2/686

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How long-term dementia care facilities in South Africa have coped with the COVID-19 lockdownComplete

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Contact: Marguerite Schneider

Host institution: Alan J Flisher centre for Public Mental Health, University of Cape Town

Project team: Dr Alice Ashwell Roxanne Jacobs Dr Sumaiyah Docrat A/prof Marguerite Schneider

Funding information: Part of the STRiDE project – Strengthening Responses to Dementia in Developing Countries – the UK Research and Innovation’s Global Challenges Research Fund (ES/P010938/1)

Project summary:

With the outbreak of Covid-19 in South Africa in March 2020, the National Advisory Group (NAG) of STRiDE decided to undertake a survey to ascertain how long-term care facilities (LTCFs) that accommodate people living with dementia were responding to Covid-19 and the resultant lockdown. A Covid-19 Working Group was established to oversee this process. Two rounds of a brief survey were distributed to LTCFs via the STRiDE networks – the first in May 2020 and a second in July/August 2020. The responses from both rounds were collated in this report. This report was discussed with survey respondents (staff from the participating LTCFs) and a separately with the STRiDE COVID discussion group. A series of lessons learnt, and recommendations were developed in these meetings and reported in sections 5 and 6 of the report. A total of 58 responses were received from 48 facilities (10 submitted responses in both waves). The sample was spread nationally and represent the slightly better resourced facilities. The recommendations propose that the entire long-term care system be reviewed, including LTCFs, home-based care and community-based support. Conversations are needed about the future of retirement villages and care homes, alternative perspectives on ageing, ‘age-friendly’ communities, and appropriate models of care.

Outputs:

A report on the survey and findings has been published here: https://ltccovid.org/wp-content/uploads/2020/12/Covid-19-and-Long-Term-Care-Facilities-in-South-Africa-survey.pdf

A journal article is in preparation for completion in early 2021.

Project website:https://stride-dementia.org/

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Impact of COVID-19 Policy Responses on Live-In Care Workers in Austria, Germany, and SwitzerlandComplete

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Contact: Michael Leiblfinger

Host institution: Johannes Kepler University Linz (AT), University of Zurich (CH), Goethe University Frankfurt (DE)

Project team: Michael Leiblfinger, Veronika Prieler, Karin Schwiter, Jennifer Steiner, Aranka Benazha, Helma Lutz

Funding information: This research is part of the of the project Decent Care Work? Transnational Home Care Arrangements, a cooperation of Aranka Benazha, Amanda Glanert, Helma Lutz, Iga Obrocka, and Ewa Palenga-Möllenbeck from Goethe University Frankfurt/Germany; Brigitte Aulenbacher, Michael Leiblfinger, and Veronika Prieler from Johannes Kepler University Linz/Austria; and Karin Schwiter, Jennifer Steiner, and Anahi Villalba from the University of Zurich/Switzerland. The project is funded by the German Research Foundation DFG, project no. LU 630/14-1, by the Austrian Science Fund FWF, project no. I 3145 G-29, and by the Swiss National Science Foundation SNSF, project no. 170353. http://decentcarework.net

Project summary:

Context: The measures taken to counter the COVID-19 pandemic restricted the circular migration of live-in care workers between their countries of origin and the elderly persons’ households.

Objective: In this comparative policy analysis, the impact of COVID-19 related policy measures for transnationally organised live-in care in Austria, Germany, and Switzerland is investigated.

Method: Policy measures and media debates were analysed and inquiries with care workers, representatives of care agencies, unions, and activist groups were carried out between March and June 2020.

Findings: In accordance with their institutionalisation of live-in care, Austria, Germany, and Switzerland responded differently to the challenges the pandemic posed to live-in care arrangements. However, all three countries focused on extending care workers’ rotas and re-establishing transnational mobility. These priorities subordinated the interests of care workers to those of care recipients. Furthermore, the measures remained short-term solutions that failed to acknowledge the fundamental flaws and inequalities of a care model that relies primarily on female migrant workers and wage differentials within Europe.

Limitations: This policy comparison is based on an in-depth analysis of COVID-19 related policies, supplemented by inquiries among stakeholders with whom research had been done prior to the pandemic. More in-depth interviews are required to further substantiate the findings concerning their perspectives and gain insight into the longer-term effects of the pandemic.

Implications: The pandemic has brought the flaws of the live-in care model to the fore. Countries need to rethink their fragile care policies, which build on social inequality and uninhibited transnational mobility.

Outputs:

Paper and presentations

Project website:http://decentcarework.net

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Nursing Homes During the COVID-19 Pandemic—Resident and Staff Cases and DeathsComplete

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Contact: Lori Gonzalez, Ph.D.

Host institution: Claude Pepper Center, Florida State University

Project team: Lori Gonzalez, Ph.D.

Funding information:

Project summary:

This study used existing datasets to examine variation across nursing homes in infection rates and deaths among residents and staff with an eye toward how to reduce future outbreaks. It also examined differences in these outcomes between traditional nursing homes and Green House homes.

Outputs:

The analyses presented here indicate that there are several factors that policymakers and nursing homes could employ in the future to reduce threats from infections like COVID-19. Geographic location was associated with infection and death rates–with nursing homes in the Northeast and South, compared to the West, having higher resident and staff infections and higher resident death rates. Nursing homes in the Northeast (but not the South) had a larger number of staff deaths. The West, with Washington state being “ground zero” for COVID-19 infections would be expected to have higher rates, however, infection deficiency data showed before the pandemic, that nursing homes in the Northeast and South had a greater rate of deficiencies, which could explain some of the geographic variation. In the analyses, the number of people with COVID-19 admitted to nursing homes were a consistent predictor of resident infection rates and deaths and the number of infections and deaths among staff. Preliminary analyses here indicate that residents fared better in Green House homes, compared to traditional nursing homes (but not staff).

Project website:https://claudepeppercenter.fsu.edu/research/policy-issue-briefs/nursing-homes-during-the-covid-19-pandemic-resident-and-staff-cases-and-deaths/

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Older adults' long-term care (LTC) experiences in Ghana during the COVID-19 pandemic: A descriptive qualitative studyComplete

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Contact: Kofi Awuviry-Newton https://www.newcastle.edu.au/profile/kofi-awuvirynewton-uon

Host institution: The University of Newcastle

Project team: 1Kofi Awuviry-Newton Jacob Oppong Nkansah, Abraham Newton Kwamina Abekah-Carter

Funding information: None

Project summary:

This study explored older peoples’ lived experiences regarding the LTC during the COVID-19 pandemic in Ghana. A descriptive qualitative approach employing semi-structured interviews were used to collect data from 15 older people from southern Ghana

Outputs:

Analysis of interview data resulted in five interrelated themes; 1) LTC sources and nature during COVID-19 pandemic, 2) older peoples’ LTC satisfaction level, 3) LTC alterations during COVID-19, 4) feelings of neglect and 5) resilience in LTC during COVID-19. Sustainability of LTC depends on the state authority to devise innovative LTC policies and programs to promote the wellbeing of older people and their primary caregivers.

Papers are currently under review.

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Population analysis of COVID-19 testing, cases and deaths in care homes in a single region of ScotlandComplete

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Contact: Professor Bruce Guthrie (https://www.ed.ac.uk/profile/bruce-guthrie)

Host institution: University of Edinburgh, Advanced Care Research Centre

Project team: NHS Lothian Public Health Team (Gwen Bayne, Christine Evans, Frederike Garbe, Dermot Gorman, Naomi Honhold, Duncan McCormick, Richard Othieno, Janet E Stevenson, Stefanie Swietlik, Kate Templeton, Mette Tranter & Lorna Willocks Jenni Burton (University of Glasgow)

Funding information:

Project summary:

Population analysis of COVID-19 testing, cases and deaths in care homes in a single region of Scotland

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Prevalence, management, and outcomes of SARS-CoV-2 infections in older people and those with dementia in mental health wards in London, UK: a retrospective observational studyComplete

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Contact: Gill Livingston https://www.ucl.ac.uk/psychiatry/people/livingston-g

Host institution: University College London

Project team: Hossein Rostamipour, Paul Gallagher, Chris Kalafatis, Abhishek Shastri, Lauren Huzzey, Kathy Liu, Andrew Sommerlad, Louise Marston

Funding information:

Project summary:

Retrospective observational study, we collected demographic data, mental health diagnoses, clinical diagnosis of COVID-19, symptoms, management, and COVID-19-related outcome data of inpatients aged 65 years or older or with dementia who were already inpatients or admitted as inpatients to five London mental health Trusts, between March 1 and April 30, 2020, and information about available COVID-19-related resources (i.e., testing and personal protective equipment). Patients were determined to have COVID-19 if they had a positive SARS-CoV-2 PCR test, or had relevant symptoms indicative of COVID-19, as determined by their treating physician. We calculated period prevalence of COVID-19 and analysed patients’ characteristics, treatments, and outcomes.

Outputs:

Findings: https://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(20)30434-X/fulltext -https://doi.org/10.1016/S2215-0366(20)30434-X

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Social connection in long-term care homes: A scoping review of published research on the mental health impacts and potential strategies during COVID-19 (Canada)Complete

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Contact: Jennifer Bethell https://kite-uhn.com/

Host institution: The Kite Research Institute, Toronto Rehabilitation Institute, University Health Network

Project team: Jennifer Bethell (KITE, Toronto Rehabilitation Institute, University Health Network, Toronto, Canada), Katelynn Aelick (Behavioural Supports Ontario Provincial Coordinating Office, North Bay Regional Health Centre, Canada), Jessica Babineau (Library and Information Services, Toronto Rehabilitation Institute, University Health Network, Toronto, Canada), Monica Bretzlaff (Behavioural Supports Ontario Provincial Coordinating Office, North Bay Regional Health Centre, Canada), Cathleen Edwards (Family Councils Ontario, Canada), Josie-Lee Gibson (Ontario Association of Residents’ Councils, Canada), Debbie Hewitt Colborne, Behavioural Supports Ontario Provincial Coordinating Office, North Bay Regional Health Centre, Canada), Andrea Iaboni (KITE, Toronto Rehabilitation Institute, University Health Network, Toronto, Canada) Dee Lender (Ontario Association of Residents’ Councils, Canada), Denise Schon (Lakeside Long Term Care Family Council, Toronto, Canada), Katherine McGilton (KITE, Toronto Rehabilitation Institute, University Health Network, Toronto, Canada)

Funding information: This research was supported by a “Knowledge Synthesis: COVID-19 in Mental Health and Substance Use” operating grant from the Canadian Institutes of Health Research (CIHR).

Project summary:

We conducted a scoping review to summarize research literature linking social connection to mental health outcomes, specifically among LTC residents, as well as research to identify strategies to help build and maintain social connection in this population during COVID-19. We searched MEDLINE(R) ALL (Ovid), CINAHL (EBSCO), PsycINFO (Ovid), Scopus, Sociological Abstracts (Proquest), Embase and Embase Classic (Ovid), Emcare Nursing (Ovid) and AgeLine (EBSCO) for research that quantified an aspect of social connection among LTC residents; we limited searches to English-language articles published from database inception to search date (July 2019). For the current analysis, we included studies that reported: (1) the association between social connection and a mental health outcome; (2) the association between a modifiable risk factor and social connection; or (3) intervention studies with social connection as an outcome. From studies in (2) and (3), we identified strategies that could be implemented and adapted by LTC residents, families and staff during COVID-19 and included the papers that informed these strategies.

Outputs:

This review is summarized with: 1) an academic publication; (2) an infographic; and, (3) a report. The latter two are available in English and French.
https://www.jamda.com/article/S1525-8610(20)30991-9/fulltext

Project website:http://www.encoarteam.com/index.html; https://twitter.com/EncoaRteam and https://www.jamda.com/article/S1525-8610(20)30991-9/fulltext;

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The impact of COVID-19 public health measures on social support service usage for dementia and ageingComplete

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Contact: Clarissa Giebel https://www.liverpool.ac.uk/population-health-sciences/staff/clarissa-giebel/

Host institution: University of Liverpool

Project team: Clarissa Giebel

Funding information: NIHR ARC NWC & University of Liverpool COVID-19 Strategic Research Fund

Project summary:

In April, we conducted 50 telephone-based semi-structured interviews with people with dementia and unpaid carers about their experiences of accessing social support services during the pandemic. In June/July, we conducted 20 follow-up interviews to see how these experiences might have changed. We have so far shown how detrimental the lack of social support service usage has been to people with dementia and carers, and how people with dementia have deteriorated much faster.

We also conducted a complementary, longitudinal, online and telephone based survey from April to August. We asked people with dementia, carers, and older adults about their social support service usage before the pandemic and at three time points, as well as about their mental health. So far, we have shown already how much reductions in service usage have been linked to poorer mental health.

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The impact of the first UK Covid-19 lockdown on carers and people living with low prevalence dementia: results from the Rare Dementia Support surveyComplete

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Contact: Dr Aida Suarez Gonzalez https://iris.ucl.ac.uk/iris/browse/profile?upi=ASUAR45

Host institution: UCL

Project team: Please see instutional link

Funding information: This research (The impact of multicomponent support groups for those living with rare dementias, (ES/S010467/1)) was funded jointly by the Economic and Social Research Council (ESRC) and the National Institute for Health Research (NIHR). ESRC is part of UK Research and Innovation. The views expressed are those of the author(s) and not necessarily those of the ESRC, UKRI, the NIHR or the Department of Health and Social Care. Rare Dementia Support is generously supported by the National Brain Appeal (https://www.nationalbrainappeal.org/

Project summary:

 

Introduction

The public health measures imposed to contain Covid-19 during the first UK lockdown resulted in significant changes in the provision of community support and care for people with dementia. People with low prevalence and young-onset dementias often experience non-memory, behavioural or neuropsychiatric symptoms that require specialised support.

Objective

We explored the impact of the first Covid-19 lockdown on people living with low prevalence and young-onset dementia and their carers in the UK.

Method

An online survey, including eleven questions about the impact of the lockdown on both the person with dementia and their family caregivers was conducted. Participants were people living with dementia and caregivers who are members of the UK national-reach organisation Rare Dementia Support.

 

Outputs:

Results

184 carers and 24 people with dementia completed the survey. People with dementia experienced worsening of cognitive symptoms (70%), ability to do things (62%) and well-being (57%) according to their carers. Carers also reported a reduction in the support received for caring (55%). 93% of carers of people living in care homes reported a reduction in their ability to provide care. 26% of carers reported changes in the medication of the person with dementia during the lockdown. 74% of people with dementia reported decreased ability to connect with people socially.

Conclusions

People with dementia experienced a worsening of dementia symptoms, removal of support and increased difficulty to connect with other people socially during the 1st wave of Covid-19. Carers encountered barriers to both receiving and providing support and a decline in their own mental health and well-being.

 

A pre-print of this paper is available at: https://www.medrxiv.org/content/10.1101/2020.12.18.20248455v1

Project website:https://www.medrxiv.org/content/10.1101/2020.12.18.20248455v1

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Top Tips for Tricky Times - research project (UK)Complete

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Contact: Claire Goodman https://researchprofiles.herts.ac.uk/portal/en/persons/claire-goodman(77079296-0427-4053-bb1d-b46245a9ebb0).html

Host institution: University of Hertfordshire

Project team: University of Hertfordshire: Kathryn Almack, Frances Bunn, Claire Goodman, Angela Dickinson, Melanie Handley, Elspeth Mathie, Andrea Mayrhofer University of East Anglia: Tamara Backhouse, Diane Bunn, Lee Hooper, Florence Jimoh, Anne Killet University of Kent: Ann-Marie Towers

Funding information: This work was supported by the National Institute for Health Research (supported by the NIHR Applied Research Collaboration (ARC) East of England and the cross-ARC care home research collaboration.

Project summary:

In response to questions and concerns raised by front-line care home staff during the early months of the COVID-19 pandemic in the UK (February – April 2020), research-based ‘Top Tips’ were co-produced with care home staff to complement emerging COVID-19 policy and practice guidelines. Designed as heuristics or rules of thumb, eight rapid, expert reviews of published, multidisciplinary research evidence were conducted. The reviews aimed to help answer care home staffs’ questions about ‘how’ to support residents, family members and each other at a time of unprecedented pressure and grief and adhere to guidance on self-distancing and isolation. Care home staff reviewed drafts of the Top Tips for relevance and usefulness to their work via representative forums, provider organisations and personal contacts of the team. Their feedback informed the content and design of the Top Tips and suggested they would be a helpful resource for new and inexperienced staff.

Outputs:

Eight Top Tips for Tricky Time resources are available to download on the ARC East of England website: https://arc-eoe.nihr.ac.uk/covid-19-projects-innovations-and-information/covid-19-resources-training-information/top-tips
Journal article: https://journal.ilpnetwork.org/articles/10.31389/jltc.43/

Project website:https://arc-eoe.nihr.ac.uk/covid-19-projects-innovations-and-information/covid-19-resources-training-information/top-tips and Peer reviewed article https://journal.ilpnetwork.org/article/10.31389/jltc.43/

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