DETERMIND-C19: Impact of COVID-19 on people newly diagnosed with dementia and their family carers, a mixed method study nested in DETERMIND

Lead Research Organisation: University of Plymouth
Department Name: Peninsula Medical School

Abstract

There are around 750,000 people with dementia in England (7.2% of the population aged 65 and over) two-thirds of whom live in the community outside care homes. They are at high risk of serious outcomes from COVID-19 and in many cases their family carers, most frequently their spouse, are also at similarly high risks due to age and comorbidities. People with dementia may be adversely affected by the steps taken by society to control the spread of the infection. They have difficulty remembering and understanding restrictions and precautions put in place to protect them and others, and may be distressed that non-resident family and social networks are compromised. In addition, there is currently reduced access to many formal care services. This may cause strain for people with dementia and co-resident and non-co-resident family carers, particularly those with a recent diagnosis who are attempting to come to terms with living with dementia and navigating the complex support landscape. We have little evidence on how lockdown is affecting community dwelling people with dementia and their family carers with different demographic and socio-economic characteristics. Impacts will differ between those with co-resident (where the carer lives with the person with dementia) and non-coresident carers. Resource mobilisation to acute care in the NHS and social care means that there are reductions/changes in post-diagnostic support and homecare, this project will investigate how these changes are affecting life under lockdown for those with dementia and their carers as a whole and particular populations. The combination of vulnerability to the virus together with reductions in services and the potential exacerbation of dementia symptoms from isolation and lack of occupation makes people living with dementia at home a unique group and as yet we know very little about how they are being affected or what influences this. We will fill this evidence gap by following up a deeply characterised sample of people with dementia and carers who were assessed in the months before the lockdown as part of the DETERMIND programme which focussed on equality and equity of care and outcomes in those diagnosed with dementia. We will examine how a group of 266 people newly diagnosed with a range of severities of dementia in the months before the COVID-19 lockdown and their carers have been affected by COVID-19 and the predictors of better and worse outcomes (quality of life, depression, carer burden and physical health). They were recruited as part of the ESRC/NIHR-funded DETERMIND programme and have a rich baseline characterisation of socio-demographics, clinical state, and service use. Using telephone quantitative and qualitative interviews we will investigate what has happened to them and how outcomes vary by clinical and sociodemographic factors such as dementia severity, neuropsychiatric symptoms, service receipt, ethnicity, gender, and place of residence. We will use these data to generate practical guidance for services and families on how best to support people with dementia and carers in this and any future pandemic.

Publications

10 25 50
publication icon
Hicks B (2022) A cohort study of the impact of COVID-19 on the quality of life of people newly diagnosed with dementia and their family carers in Alzheimer's and Dementia: Translational Research & Clinical Interventions

 
Description DETERMIND-C19 was one of only a small number of studies that compared quantitative findings collected in the pandemic with pre-pandemic measures; with the majority of studies undertaken during COVID-19 using cross-sectional surveys or relying on subjective retrospective ratings. This provided a more robust methodological approach through which we were able to ascertain the impact of the Governmental restrictions on the well-being of community-dwelling people with dementia and their carers. Our findings generated new knowledge that was crucial for understanding how to support people with dementia and their carers during any future pandemics or periods of national crisis.
Specifically, our findings suggested that contrary to our initial hypothesis, people with dementia did not experience a decline in their life quality during the pandemic. This points to the resilience of people with dementia, which is often underestimated, as well as their ability to adapt in challenging and unprecedented times. Our supplementary qualitative research, was one of the first to provide insights into the ways that people with dementia were able to retain their sense of social inclusion and push back against the threat of a 'shrinking world.' This included engaging with information and communication technologies (ICT) for the first time, adapting their hobbies and activities to overcome barriers imposed by the pandemic, and employing a range of psychological coping strategies.
However, our results suggested that the maintenance of well-being for people with dementia during the pandemic may have come at the expense of their family carers, who reported a decline in their Quality of life and an increase in their sense of loneliness over this time. This was particularly pertinent for carers supporting people with more severe dementia, and those in more deprived areas with limited post-diagnostic services.
Our study has also highlighted important future research questions that must be addressed. Namely, it is important to understand whether the detrimental impact on the well-being of carers during the pandemic is long-term or whether they will be able to recover as society begins to re-open. The longitudinal nature of our DETERMIND study (of which DETERMIND-C19 is a sub-study) will enable us to provide these important insights through monitoring participants' levels of well-being and service use in the prevailing years, post-pandemic. Furthermore, within our cohort we will be able to compare the experiences of people diagnosed pre and post COVID-19 to elicit any long-term impacts of the pandemic.
The change in our research methods from face-to-face to telephone interviews, which was enforced by the lock-down, enabled us to collect important insights from our research workers on delivering standardised measures over the telephone with people with dementia. They emphasised the person-orientated strategies that the researchers adopted to support participants to answer the questions and ensure they were 'emotionally safe'. Our researchers struck a balance between the needs of participants and the requirements of the research under the constraints of the pandemic.
Exploitation Route Our findings highlights the need for dementia practitioners and policy makers to continue to acknowledge people with dementia as active social agents with the ability to influence their own experiences rather than position them as passive recipients of care. They suggest ways that community-dwelling people with dementia can be supported to retain their social inclusion during challenging times. This could include practitioners creating dementia-friendly guidelines to encourage and assist people with dementia and their carers to engage with ICT as well as provide support and information on developing positive coping strategies. Furthermore, our findings outline the need for policy makers to encourage primary and secondary care services providing memory assessment services and post-diagnostic care to re-open post-pandemic as soon as possible and maintain them as a priority. Particular focus should be given to services providing social care for carers as this was most notably missed and contributed to higher levels of loneliness.
Finally, our learning from our research workers can be applied by other studies who wish to ensure people with dementia can meaningfully engage in quantitative research via a variety of modes. Moving forward we aim to collaborate with other research projects conducted during COVID-19 to develop best-practice guidelines.
Sectors Healthcare

 
Description Data have been fed into DHSC/NHSE via its dementia CAG, also fed into UKRI/China researach collaboration and to the World Dementia Council.
Sector Healthcare
Impact Types Policy & public services

 
Title Delivering standardised quantitative measures over the phone with people with dementia and their carers 
Description Following the onset of the pandemic our research methods changed from face-to-face visits to telephone and virtual platform interviews with people with dementia and their carers. Through reflection with our DETERMIND researchers we have developed guidance that can inform best practice on how to maintain good data quality when delivering remote interviews with people with dementia and their carers. This includes providing prompt cards that can be followed by people with dementia when undertaking telephone interviews. Our findings will be published within a paper and we aim to use them as part of a collaboration with other NIHR/ESRC funded research studies to develop best practice guidance on conducting research with people with dementia and their carers during the pandemic. 
Type Of Material Improvements to research infrastructure 
Year Produced 2022 
Provided To Others? No  
Impact This work is still in progress 
 
Description DETERMIND-C19 and Pri-Dem project 
Organisation Newcastle University
Country United Kingdom 
Sector Academic/University 
PI Contribution We have collaborated with the Pri-Dem team at Newcastle University who have been funded by the Alzheimer's Society to develop and evaluate acceptable, feasible and sustainable models of care, which are centred on the person receiving the diagnosis (https://www.alzheimers.org.uk/research/our-research/research-projects/pri-dem-project). During the pandemic, they collected qualitative data on service delivery from the perspective of health and social care professionals. We have supplemented this with data collected as part of the DETERMIND-C19 project to examine the impact of these changes to services from the perspective of people with dementia and their carers. Alongside researchers from the Pri-Dem study we have begun a secondary qualitative analysis of this data. A joint publication is now in development that will examine dementia service management within a time of crisis from the perspectives of health and social care professionals, people with dementia and their carers. This will provide important learning that can be used during any other future periods of crisis management.
Collaborator Contribution Pri-Dem researchers have provided their time to analyse the combined DETERMIND-C19 and Pri-Dem qualitative dataset and will support the writing of the joint publication.
Impact No outputs as of yet
Start Year 2022
 
Description D-C19: Impact of pandemic on QoL of DETERMIND cohort 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact The presentation was given as part of the Centre for Dementia Studies at Brighton and Sussex Medical School yearly conference, and focused both on the DETERMIND and DETERMIND-C19 studies. This was a national conference that was virtually attended by academics, practitioners, policy makers and people living with dementia and their carers. The presentation sparked conversations and discussions around the research, particularly as it demonstrated that the Quality of Life for people with dementia and their carers during the pandemic had not decreased as anticipated. The research provided insight into how quality of life had been maintained by these populations during this unprecedented time.
Year(s) Of Engagement Activity 2021
URL https://www.bsms.ac.uk/about/events/2021/02-03-dementia-research-conference.aspx
 
Description DETERMIND Update: Examining care provision post-pandemic 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact DETERMIND researchers presented at the online Centre for Dementia Studies annual conference. This was attended by around 850 delegates over two days. The presentation reported on the findings from the DETERMIND and DETERMIND-C19 studies and examined their implications for the post-pandemic care pathway. The audience consisted of practitioners, academics, students and people living with dementia and their carers. The presentation sparked discussion afterwards as well as interest in the guidance that was created for dementia practitioners as a result of the project findings.
Year(s) Of Engagement Activity 2022
URL https://www.bsms.ac.uk/about/events/2022/02-23-dementia-research-conference-2022.aspx
 
Description DETERMIND and DETERMIND-C19 research overview 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Policymakers/politicians
Results and Impact The objective of the workshop was to promote scientific exchange between European and Chinese researchers working on COVID-19-related topics, who are funded by respectively European research agencies and by the NSFC. Participants were able to engage in scientific discussions with peers and establish contacts for possible future collaboration. The networking will provide opportunities to develop collaborations to extend the DETERMIND research programme in the future.
Year(s) Of Engagement Activity 2020
URL https://scienceeurope.org/what-s-going-on/
 
Description DETERMIND-C19 findings 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact An outline of the DETERMIND-C19 preliminary findings was delivered online to a PPI group consisting of people with dementia and their carers. The presentation discussed the findings from the project and generated discussion about how they could be used moving forward to improve the dementia care pathway post-pandemic. They also advised on how the findings could be reported in an accessible manner for people with dementia and their carers.
Year(s) Of Engagement Activity 2021
 
Description Impact of COVID-19 on people with dementia and their carers: differences between rural and urban populations 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact An online presentation examining the impact of COVID-19 on the Quality of Life of people with dementia and their carers. The presentation drew on data obtained from the DETERMIND-C19 cohort and specifically examined the differences between rural and urban dwelling populations. The presentation was part of the RaDAR Summit 2021 (https://cchsa-ccssma.usask.ca/ruraldementiacare/), which was hosted by Universities in Canada and was attended by International audiences including practitioners, researchers, policy makers and people living with dementia and their carers. The presentation provided a starting point to discuss the potential to establish a project similar to DETERMIND-C19 within rural areas of Canada.
Year(s) Of Engagement Activity 2021
URL https://cchsa-ccssma.usask.ca/ruraldementiacare/summit/summit-2021-archive.php
 
Description Inequalities in the dementia care experience during the COVID-19 pandemic 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Postgraduate students
Results and Impact DETERMIND researchers were invited to provide an expert lecture for Masters students who were studying at the Centre for Dementia Studies at Brighton and Sussex Medical School. Many of these students were dementia practitioners that were studying alongside their work. The lecture drew on the DETERMIND-C19 findings to provide an overview of the inequalities and challenges that arose in the dementia care pathway for people with dementia and their carers during the pandemic. Following this, there was a discussion on how the students/practitioners could address some of these challenges within their practice moving out of the pandemic.
Year(s) Of Engagement Activity 2021
 
Description Quality of life during COVID-19 for people with dementia and carers 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact A joint presentation with the Time for Dementia programme (https://www.alzheimers.org.uk/get-involved/engagement-participation/time-dementia-programme) discussed the qualitative findings from both research projects that examined the perceived impacts on the pandemic on people with dementia and their carers. The presentation was part of the NIHR Applied Research Collaboration for Kent, Surrey and Sussex conference. It highlighted many similarities within our research findings and established the beginning of a collaboration to examine the combined datasets. Following the presentation we collaborated to develop a good practice guidance for practitioners wishing to support people with dementia and their carers during the pandemic.
Year(s) Of Engagement Activity 2021
URL https://arc-kss.nihr.ac.uk/events