The experience of people with dementia and cognitive impairment in relation to the COVID-19 pandemic: a quantitative analysis of the English Longitudinal Study of Ageing (ELSA)

This research focuses on the experience of people with dementia and cognitive impairment during the COVID-19 pandemic, and aims at quantifying the short, medium and long-term impacts of social distancing and self-isolation.

The impacts to be assessed will include socio-economic inequalities in physical and mental health, well-being, health behaviours, access to care, and the development of and recovery from COVID-19 infection.

Dementia and cognitive impairment place an increasing large burden and economic cost on health and care services, as well as on the general population through informal caregiving.

Older people with dementia are highly vulnerable, relying on caregivers for their day-to-day activities, and are therefore likely to be disproportionately affected by lockdown, self-isolation and social distancing.

They may have less reserve when their homeostasis is threatened, making them particularly susceptible to rapid declines in health and well-being during the pandemic.

This study will address the following research questions, formulated in conjunction with PPI representatives, for older people with dementia or cognitive impairment living in private households during the COVID-19 pandemic: What are their experiences of shielding, self-isolation, and the development of and recovery from COVID-19 infection, compared to those without cognitive impairment?

How has COVID-19 affected receipt of care, access to health and social care and treatment for non-COVID-19 health conditions?

What changes in lifestyle behaviours (sleep, alcohol consumption, smoking, physical activity, diet) occurred during and after the pandemic? How do these behaviours interact - are changes in one behaviour associated with changes in others? What are the characteristics associated with positive and negative changes in behaviours?

What are the short, medium and long-term effects of the pandemic on individuals mental health, well-being, psychological responses and associated factors? How are socio-economic status, geographic location and key co-morbid conditions associated with all of the above?

What are the policy implications of the findings from the above research questions for improving the outcomes of this high-risk group?

This 18-month project comes from a multidisciplinary team with experience in cognitive ageing, epidemiology and primary care.

It will use data from the English Longitudinal Study of Ageing (ELSA) COVID-19 substudy, collected on a representative sample of older individuals living in private households in June/July, November/December 2020 and Spring 2021, and integrate these with data already collected over more than 20-years on physical and mental health, well-being, social relationships and socioeconomic circumstances.

Timeline for delivery by month: 1-3: interim findings on research question RQ1; 6-9: interim findings on RQ2; 10-12: interim findings on RQ3; 13-15: interim findings on RQ4; 12-15: final summary of the key inequalities from RQ5, which will be explored throughout the project. 16-18: final report and summary produced, and dissemination to policy makers and other audiences.

The study will provide high quality evidence on the experiences of a vulnerable group of older people with a view to shining a light on gaps in service provision, where policy attention could improve care and prevent future shortfalls. The findings of this study will help develop more effective policies for maintaining health and well-being.