A cohort study of the impact of COVID-19 on the quality of life of people newly diagnosed with dementia and their family carers.

COVID-19 has impacted people with dementia and their family carers, yet little is known about effects on overall quality of life. In a UK cohort study, pre- and post-pandemic data were collected from 114 carers and 93 recently diagnosed people with dementia. Latent growth curve modeling examined change in quality of life. Carers reported significant decline in quality of life, although no change was demonstrated by people with dementia. In multivariable analyses, higher levels of cognitive impairment, deprivation, study site, and lower number of memory clinic contacts were associated with greater decline in carer quality of life. Maintaining life quality for people with dementia during the pandemic appears to have come at the expense of their family carers. This inequity has fallen hardest on those caring for people with more severe dementia, in deprived areas, and with least support from memory services. These effects may be prevented or reversed by post-diagnostic care.

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© 2022 The Authors. Alzheimer's & Dementia: Diagnosis, Assessment & Disease Monitoring published by Wiley Periodicals, LLC on behalf of Alzheimer's Association.

Déclaration de conflit d'intérêts

This project was supported by UK Research and Innovation (UKRI) through the Economic and Social Research Council (ESRC) by a research grant which supported the salaries of the research workers employed on this project (AG, AK, EM, EN, JR, AR, ES, BS) and 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. SR reports payment from Trinity College Dublin to her institution to attend meetings. RW reports institutional grant funding ESRC, UKRI, NIHR and its Schools for Social Care Research (SSCR) and Primary Care Research (SPCR), UKSPINE, MSD, Alzheimer's Society, Greek Government, and the EU; the Brookdale Institute funded travel and expenses for attending an international advisory board meeting. EN reports employment by the NHS as a researcher. KB reports institutional research grants including salary funding from NIHR SSCR, NIHR RfPB, NIHR HS&RD, and ESRC. She reports several leadership and advisory roles in dementia and social care organizations, all of which are unpaid. EB has institutional grant funding from NIHR SSCR, NIHR, ESRC, and Abbeyfields; she holds non‐paid advisory roles and is the NIHR SSCR Deputy Director, which pays part of her salary to the University of York, her employer. CB reports institutionally paid grants from: Alzheimer's Society, Addenbrooke's Charitable Trust, ESRC, NIHR ARC, 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, MRC, AHRC‐UKRI GCRF, the Gillings Family Foundation, and NIHR HTA. She has received institutional and 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; and 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. NB reports institutional grants from NIHR HS&DR and NIHR SSCR. She receives royalties from Routledge from revenue of publications by Melanie Klein paid personally. 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). JD reports support from ESRC, NIHR, and UKRI; and has grants paid institutionally from the Alzheimer's Society and NIHR. KG has institutionally paid grant support from HIHR SSCR. MK has grants paid institutionally from: ARUK, Alzheimer's Society, Australian Research Council, ESRC, Health Foundation, Medical Research Council (MRC); NIHR, NIHR SSCR, Department of Health and Social Care for England (DHSC), NIHR RfPB, Open Society Foundation, UKRI, ESRC and RCN Foundation. He receives a salary from the London School of Economics and has received payment for teaching from the University of Hong Kong and the Civil Service College Singapore. RP reports support paid institutional support to attend conferences from ESRC/NIHR. RS reports institutional research funds from Janssen, a supported PhD studentship from Takeda, for supervision of a GSK employee's PhD. He has received personal royalties from Oxford University Press for two co‐edited textbooks. AT reports institutional grants from: Alzheimer's Society, and ARUKI. BHu, AG, AK, EM, EN, JR, AR, ES, BS, PH, EM, RP, LR, and JR make no other disclosures.