The English Longitudinal Study of Ageing (ELSA) is one of 11 new studies that joined CLOSER at the end of 2020. Here, Kate Coughlin, ELSA Project Manager, introduces the study, their work on COVID-19 and its future aims.
Older age is a time of significant change, not just in people’s health and wealth, but also in social connections, mental health and wellbeing. Throughout society, we see the extraordinary contributions older people make to business, politics, the voluntary sector, the arts, research and other fields. At the same time, the demands on society increase as the older population grows, which has sadly been brought into sharp focus during the pandemic.
ELSA was established in 2002 as a multi-faceted survey to track the dynamics of ageing, with the aim of advancing research and informing policy. ELSA is unique in its breadth, collecting data on everything from participants’ physical and mental health, cognitive function and financial circumstances, through to their attitudes and beliefs.
Starting with an initial sample of 12,099 people aged 50 and over 100, ELSA is now beginning its tenth wave of data collection, representing 20 years of longitudinal data. The ELSA sample is refreshed periodically to ensure that it remains representative of the older population in England. By maintaining the sample in this way, alongside tracking different aspects over time, ELSA is uniquely-placed to provide key evidence of change across different domains as people age.
Each wave of data collection takes place every two years via various modes. An in-home interview is carried out along with a separate self-completion questionnaire. Our participants have a nurse visit their homes periodically, collecting biomedical measures including a blood test for the extraction of biomarkers and DNA. We also introduced an online component with the nutrition module in Wave 9 and the COVID-19 surveys in 2020.
In ELSA, we try to achieve a balance between maintaining key longitudinal measures across waves, while introducing new content in response to changes in domestic and international policy drivers and scientific priorities. In 2018, we carried out the Healthy Cognitive Ageing Project (HCAP) as part of an international research collaboration investigating dementia risk. A harmonised protocol was used to carry out face-to-face cognitive assessments in ELSA participants with normal cognition, mild cognitive impairment or dementia. The protocol has now been used by six ageing studies around the globe, which will allow us to make important cross-country comparisons of the prevalence and trends of dementia in ageing populations.
In my blog post back in June 2020, I set out the plans we had to collect data from ELSA participants on their experience during the COVID-19 pandemic. With funding via the UKRI COVID-19 Rapid Response call, we collected data at two time points with the first in June-July 2020 and the second in November-December 2020.
Data collection was carried out via an online questionnaire with the option of a telephone interview for those who could not access the internet. In ELSA, we are keenly aware of the barriers to accessing the internet faced by older people, so we were unsure of the acceptability of an online survey. The online nutrition module we introduced in Wave 9, saw a 61% response rate, so we expected a higher response via the telephone for the COVID-19 survey. However, we found that 83% of our participants who completed the survey did so online, with 17% taking part through a telephone interview. Although there was an age gradient, this nonetheless was a surprising result and one which deserves further research. Barriers such as perception of the usefulness of the internet for older people, have potentially been broken down by the pandemic.
Data from the first data collection wave are now available to download from UKDS and briefing reports can be found on the ELSA website. Data and reports from the second wave of data collection will be available soon.
As with most studies, our main data collection period has been disrupted by the pandemic. Due to go into field last October, Wave 10 of ELSA will now start in April-May 2021. With restrictions still in place, as well as potential longer-term reticence from our participants about in-home interviewing, we are developing an adapted video interview. We hope to begin in-home interviews later in the year and have also taken the decision to push the nurse visit for the whole sample to Wave 11.
This year we will be introducing several new questions to Wave 10. One of these will ask whether participants have been referred by a doctor, social worker or other health professional to take part in art, music, exercise or other similar groups. This is called social prescribing and is becoming increasingly common as we learn more about the benefits of taking part in cultural and social activities, particularly as we get older. ELSA studies have shown that taking part in these activities can reduce the risk of developing dementia and even help us to live longer. And with singing therapy beginning to be used to help people with long COVID, social prescribing is likely to become even more commonplace. Gathering information on how and when social prescribing is used will help us to build a picture about how it is working across the country.
We will also be adding more questions on internet usage and digital access barriers. The importance of online connections through mobile phones, tablets and computers for the maintenance of social relationships has been vividly illustrated by the COVID-19 experience, with online services being one of the primary means of sustaining contact with family and friends during lockdown and buying essentials. ELSA is in a unique position of being able to show where digital access has been improved by the COVID-19 experience and where disparities persist.
Other topics will be rotated back in from previous waves such as discrimination, generativity and personality measures. We will also be adding COVID-19 related questions, including some to identify potential cases of long COVID. Wave 10 will also include the addition of activity monitors to objectively measure participants’ activity and sleep. This is part of a UKRI-funded project in collaboration with our sister study in China, CHARLS.
The ELSA data from the completed waves are freely available to download from the UK Data Service. The open availability of ELSA data over almost 20 years has resulted in 900+ publications and counting.
As well as the main interview and nurse visit data, researchers can also access various genetic data products, nutrition data, HCAP and COVID-19 Substudy data. Although only available within the ELSA team at the moment, the ELSA dataset is also enriched by linking with various administrative datasets. These include Hospital Episodes Statistics (HES), mortality and cancer registration records, primary care records, and economic records including national insurance contributions and benefits.
A thank you to ELSA participants
In ELSA, we are lucky to have a cohort of very dedicated participants. Their data have been used for almost 20 years as a key source of information informing all areas of policy related to older people, from the formation of pension policy, estimation of social care needs and costs, right through to the benefits of continuing the Freedom Pass scheme.
By 2036, it is estimated that 1 in 4 of us will be over 65. We hope that ELSA will continue to contribute data to influence research and policy, helping us all to live longer, happier and healthier lives.
- Study profile: ELSA
- Related blog: Assessing the impact of COVID-19 on the older population in England
This blog post is part of a series where CLOSER introduces the new studies that have recently joined the consortium as part of its expansion. Read more here.