Predictors of loneliness during the Covid-19 pandemic in people with dementia and their carers in England: findings from the DETERMIND-C19 study

Abstract

Objectives

To identify factors that predict the risk of loneliness for people with dementia and carers during a pandemic.

Methods

People with dementia and their carers completed assessments before (July 2019–March 2020; 206 dyads) and after (July–October 2020) the first Covid-19 ‘lockdown’ in England. At follow-up, the analytic sample comprised 67 people with dementia and 108 carers. We built a longitudinal path model with loneliness as an observed outcome. Carer type and social contacts at both measurements were considered. Other social resources (quality of relationship, formal day activities), wellbeing (anxiety, psychological wellbeing) and cognitive impairment were measured with initial level and change using latent growth curves. We adjusted for socio-demographic factors and health at baseline.

Results

In carers, higher levels of loneliness were directly associated with non-spouse coresident carer type, level and increase of anxiety in carer, more formal day activities, and higher cognitive impairment in the person with dementia. In people with dementia, non-spouse coresident carer type, and higher initial levels of social resources, wellbeing, and cognitive impairment predicted the changes in these factors; this produced indirect effects on social contacts and loneliness.

Conclusion

Loneliness in the Covid-19 pandemic appears to be shaped by different mechanisms for people with dementia and their carers. The results suggest that carers of those with dementia may prioritize providing care that protects the person with dementia from loneliness at the cost of experiencing loneliness themselves. Directions for the promotion of adaptive social care during the Covid-19 pandemic and beyond are discussed.

Keywords:

• Dementia
• carers
• loneliness
• social resources
• wellbeing
• Covid-19

Acknowledgements

We thank all the people with dementia and carers that gave their time to be part of this study.

Disclosure statement

This project was supported by UK Research and Innovation (UKRI) through the Economic and Social Research Council (ESRC) by a research grant which supported travel expenses. The project used data from the DETERMIND project funded by UKRI/ESRC and the National Institute of Health and Social Research (NIHR) that supported the participation of all authors. Both grants were paid to institutions, not personally. The following are in addition to the above and are outside the submitted work. SB reports ESRC, UKRI, and NIHR institutional grant funding and personal fees and non-financial support from medicolegal reports, Lilly, personal fees from Axovant, personal fees from Lundbeck, personal fees from Nutricia, and honoraria from the Hamad Medical Service and for lectures and talks. He is a Trustee of the Alzheimer’s Society, Editor in Chief of the International Journal of Geriatric Psychiatry (personal honorarium) and a Non-Executive Director of Somerset Partnership NHS Foundation Trust. BH reports European Union (EU) ERASMAS institutional grant funding and personal lecturing fees from Bournemouth University. CB reports institutionally paid grants from: Alzheimer’s Society, Addenbrooke’s Charitable Trust, ESRC, EU, Canadian Institute of Health Research, Alzheimer’s research UK (ARUK), NIHR, National Institute on Aging/National Institutes of Health, Innovative medicines Initiative (EPAD) Innovative Medicines Initiative Joint Undertaking, UKRI GCRF, and the Gillings Family Foundation. She has received personal reimbursement for travel/accommodation/subsistence expenses to attend meetings/conferences as speaker. She is a member of: NIA HRS Data Monitoring Committee with honoraria paid to employing institution (University of Cambridge) and travel and subsistence expenses reimbursed; AXA Research Fund Scientific Board (honoraria paid to employer; DBT/Wellcome Trust India Alliance Fellowship Selection Committee (honoraria paid to self, travel & subsistence expenses reimbursed), Chair of the Canadian Longitudinal Study on Aging Scientific Advisory Board (travel/subsistence expenses reimbursed); Co-Chair of the Alzheimer’s Society Research Strategy Council (travel/subsistence expenses reimbursed); Chair of the BRAIN & HEADING International Oversight Committee (travel/subsistence expenses reimbursed); member of The Irish Longitudinal Study on Aging (TILDA) Scientific Advisory Board Travel (subsistence expenses reimbursed); CUHK Project Advisory Board; University of Sheffield Health Lifespan Institute Advisory Board; ATHLOS Advisory Board (travel/subsistence expenses reimbursed); Barcelona Brain Health Initiative Scientific Advisory Board (travel/subsistence expenses reimbursed); DZNE International Scientific Review Panel (travel/subsistence expenses reimbursed); Scientific Advisory Board for UKPRP Air pollution and cognitive health consortium, InSPIRE. She is: Chair, Faculty of Public Health Academic & Research Committee (travel/subsistence expenses reimbursed); Trustee, Faculty of Public Health Board (travel/subsistence expenses reimbursed); Chair Royal College of Physicians Advisory Group on Health Inequalities (travel/subsistence expenses reimbursed); Chair, Public Health England - University of Cambridge Academic Liaison Committee meeting; and Co-Chair, East of England Public Health England Research and Evaluation Hub. MD has the following unpaid positions: Carers UK (Charity Trustee); The Centre for Ageing Better (Charity Trustee); Crossroads Care Richmond & Kingston (Charity Trustee); The Friends of Queen Mary’s Hospital Roehampton (Charity Trustee). AT reports institutional grants from: the Alzheimer’s Society, and UKRI. RP, SR, PH, JR, JD, EM, and LR make no other disclosures.

Ethical approval

Ethics approval for the DETERMIND and DETERMIND-C19 studies were obtained by the HRA Brighton and Sussex Research Ethics Committee [REC 19/LO/0528. IRAS 261263].

Data availability statement

Deidentified participant data will be available with investigator support from 9 months after publication of the last DETERMIND-C19 paper via [email protected] for researchers whose proposed use of the data has been approved by the DETERMIND Programme Management Board. The study protocol will be available as a supporting document.

Notes

1 We examined differences in background variables and cognitive impairment between 1. people with dementia and 2. carers, who participated in both waves (vs. baseline only) via chi-square and t tests. Among people with dementia, those who participated in both waves had a lower CDR score, M(SD)=0.7(0.4) vs. 0.8(0.5), t₍₁₉₅₎=3.01, p = 0.003. Among carers, those who participated in both waves were fewer with no qualification 7% vs. 12%, and more with higher education, 35% vs. 28.5%, χ²₍₄₎=11.28, p=.02. There were no significant differences in age, gender, marital status, education, ethnicity (White vs. non-White), occupational class, index of multiple deprivation, time since diagnosis of dementia, and physical health (among people with dementia and carers), nor in working/volunteering status and home ownership (among carers). Our use of FIML method for missingness meant that the few above differences were taken into account in the models.

Additional information

Funding

DETERMIND-C19 was funded by the UK Research and Innovation (UKRI) through the Economic and Social Research Council (ESRC). DETERMIND is funded by UKRI/ESRC and the National Institute for Health Research (NIHR) through their Dementia Research Initiative. The views and opinions expressed here are those of the authors and do not necessarily reflect those of UKRI, the ESRC, or NIHR.