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Alastair Leyland and Lia Demou talk to Elise Whitley about her work investigating the mental health of carers during the first COVID-19 national lockdown in the UK.
Podcast series from the MRC/CSO Social and Public Health Sciences Unit, University of Glasgow.
Alastair Leyland:
Welcome to 15 Minutes on Health Inequalities and a podcast looking at the mental health of home carers during the first COVID-19 national lockdown in the UK. I'm Alastair Leyland from the MRC/CSO Social and Public Health Sciences Unit at the University of Glasgow and with me is
Lia Demou:
Lia Demou and today we're talking to
Elise Whitley:
Elise Whitley and I'm a medical statistician and I work in the same Unit in the Inequalities team.
Alastair Leyland:
Thank you. Elise, what prompted you to carry out this piece of research?
Elise Whitley:
Well, I'm a carer myself and I have a number of friends who are also carers and obviously when the first lockdown happened it had a huge impact on everyone's lives. But I was aware that there were some particular issues that myself and my friends were facing that were fairly unique to us as carers, and we already knew pre pandemic that people who care for others, particularly in the same household, have worse mental and physical health than the general population. And this, coupled with the lockdown experience, which essentially had us restricted to our homes 24 hours a day, struck me as a potential perfect storm for poor mental health among carers, potentially.
Lia Demou:
Thanks Elise, can you tell us a little bit about who are the home carers that you were studying and who were they caring for?
Elise Whitley:
So we're talking here about unpaid caring, so not people who care for others in the course of their work, but people who care for another person. And in this case, another person that they lived with. So, usually this is a close family member who has a disability or long term condition or difficulties related to old age. And I think sometimes as carers caring's driven by altruism, but I think more often, to be honest, it's driven by necessity, where formal care isn't sufficient or it's simply non-existent, and the careers we were looking at were, as we'd expect, mostly looking after a family member. About half were caring for spouse and the other half were split fairly evenly between children under 18, adult children and older people, so parents and grandparents. And it's worth noting, actually, that around a tenth of people were caring for more than one person, so we might expect them to have a particularly challenging setup.
Alastair Leyland:
And can you tell us briefly what you did in this study?
Elise Whitley:
So, we used data from Understanding Society, which is a large representative longitudinal study of the UK population. And we picked understanding society because it held data from before the pandemic, which a lot of COVID studies didn't. And also it carried out a series of monthly surveys through early lockdown, so that let us track changes over time. We had a sample of around 10,000 individuals, of whom about 600 were home carers, according to our definition. And we compared the mental health of carers and non-carers at 3 different time points. So we looked in 2019 before the pandemic, we looked in April 2020 at the start of the first lockdown and we looked again in July 2020, which was further through lockdown but as restrictions were starting to ease.
Lia Demou:
Elise, you mentioned that you were looking at the first lockdown, from March to July. Can you remind us what restrictions were in place in the UK at that time?
Elise Whitley:
So, the first lockdown, which seems a long way away now, was driven very much by the staying at home and away from others policy. So, you'll remember that early on this meant that in effect we were all fairly confined to our homes. So, we could only leave for a very limited set of circumstances. So, we could shop for basic necessities, we could have one form of daily exercise and we could attend medical appointments, but that was pretty much it. And on top of that, there was this overnight closure of schools and a withdrawal of health and social services, many of which are vital to care recipients and by association the people that care for them. And then later in our period of interest in July, that's when the restrictions were starting to be relaxed. So, the schools were reopening and non-essential shops and the hospitality sector also reopened. And also household mixing was relaxed. So, in July, I think 2 households were able to meet and stay overnight in the same place. But I think it's important to say that our experience as carers was that the thing we needed to reopen, which was the health and social care services, and that just didn't restart in the same way. So, a lot of the reopening of society wasn't actually beneficial to carers.
Lia Demou:
So you talked a little bit about this reopening of health and social services and how did you expect that these restrictions would impact on the mental health of home carers?
Elise Whitley:
Where do I start? There were various groups of carers, sorry, various carer’s groups carried out surveys of their members and they reported sort of quite significant impact. So, first of all, there was the threat of COVID itself, so many people who are in need of care have long term health conditions or disabilities, and that placed them in the high risk groups for COVID, which was frightening generally at a time when COVID seemed to be really quite a dangerous disease. But also I don't know if you remember early on, but there were reports in the media about rationing of ventilators and intensive care treatment, and there were suggestions that these higher risk groups might not be prioritised. And there were a lot of reports of carers being quite distressed by the possibility that their loved one might not be a priority group for treatment. And carers themselves are also more likely to have poorer health, and so again they were more likely to be vulnerable and a lot of carers were concerned about what might happen to the person they cared for if they became ill because quite often they are the only person that's responsible. So that was the impact of COVID. Then there was the impact of the lockdown restrictions. As I say as well as healthcare, daycare, and respite services stopped and again that was overnight, and those were vital social support for carers, but also for the people they care for. The suddenness, I think, for people with learning disabilities or dementia was really difficult to understand. And a lot of carer surveys reported increases in challenging behaviours among the people being cared for, which added to the difficulties faced by carers.
Alastair Leyland:
And what were your main findings?
Elise Whitley:
So, first of all, we compared the mental health of carers and non-carers before the pandemic and early on in lockdown. So, as we expected, we saw that the mental health of carers was worse before the pandemic and going into early lockdown, mental health of both groups got worse. But it got worse to a greater extent among carers. So, they started from a worse position and they got even worse compared to non-carers. So, it looked like a bad situation that got even worse. And then when we compared mental health in April and July moving forward through lockdown, non-carers seemed to bounce back and their mental health improved, but we didn't see the same for carers and if anything, their mental health remained worse than pre-pandemic levels.
Lia Demou:
Were you able to look at whether these effects differed between groups of the population of carers?
Elise Whitley:
Yep. So, we compared different groups of carers to see if any did particularly badly. So, not surprisingly, carers who were looking after more than one person, or who were providing more hours of care they did particularly badly. But there were other groups too that didn't do so well. So, early in lockdown, parents caring for children under 18 seemed to do particularly badly, and we wondered if this was the result of the additional pressures of home schooling. So, if they were caring for a child under 18, that's likely to be a child with health problems or learning difficulties. And so we suspect that the switch to remote learning was potentially harder than for an able-bodied child. And this is supported by the fact that this group did seem to improve a bit in July when schools reopened. In the longer term, it was people who were looking after adult children. So again, who potentially would have physical or learning disabilities or people who were looking after someone with a mental health problem. It was them that did particularly badly in the long term and we suspect, partly, this might be a result of cumulative stress. It's documented that it's harder, it's more stressful to care for somebody whose difficulty results in sort of behavioural manifestations. So those groups, I think we're starting to do worse. And also, as I've said before, the respite and daycare services didn't restart in the same way that schools did. And so I think again there was this accumulation of stress just building with no obvious end in sight.
Alastair Leyland:
We hope the lockdowns are now a thing of the past. Does that mean that this problem's gone away?
Elise Whitley:
Absolutely not. Absolutely not. I think I think firstly, there's an impression that life is back to normal, so shops and schools and hospitality are open again. But the reality is that, as I've said before, that health and social services are still not catching up. They're still not open, or they're still not back to the level that they were. And this is having a particular impact on carers and the people they care for. I think also there's potentially been damage done to some vulnerable groups. I think particularly those with learning disabilities or dementia or mental health problems. Those were groups that had real difficulty making sense of lockdown, to understand what was going on and who were also less able to make this move to online contact. And I suspect that's led to increased isolation and poorer mental health. And I know there is some evidence that dementia patients, for example, showed quite a big decline due to the lack of sort of social interaction and the feeling is that that can't be recovered, so they're they're sicker than they needed to be coming out of this period. And I think also and this is sort of speaking more to friends at the beginning of the pandemic that there was awareness of carers. So carers were being described as the forgotten health workers and there was greater awareness of the idea of unpaid care because everyone was mucking in and getting shopping for their neighbours and so on and becoming aware of helping others. But having come through this, I think that actually if anything carers feel more forgotten now. I have a friend who talked in the early stages of the pandemic about how because of lockdown, everyone was living her life. So, she is restricted a lot to her home, she doesn't travel to foreign countries, she doesn't use hospitality at all. And I think she felt that there was this potential for people to maybe understand the life she's living. But I think she feels now, and I think a lot of us do, that now life is returning to normal in inverted commas, she's still living that same life, but everyone else has moved on and is breathing a sigh of relief. Wasn't that awful but it's not for us anymore. So, I think early on there was an optimism that perhaps people were going to be more sympathetic to carers. But I think now there's a danger that carers will feel even more forgotten in the aftermath.
Alastair Leyland:
Yeah, I see. So, what needs to be done to improve the situation for home carers?
Elise Whitley:
I think there needs to be a lot more recognition. I think there needs to be a very serious look at the level of health and social care provided to carers. When we looked at our carers, 60% of them were providing more than 20 hours of care a week and a fifth were providing continuous care. And this is on top of working, of looking after able-bodied children and so on. But prior to the pandemic, the vast majority, I think only 15% of carers were actually receiving any support from the state, which is tiny. And anecdotally, as I say, the situation has got worse because some services haven't restarted and I'm aware that some people are not receiving the same level of care that they did before. And so I think as we build back better, as the as the phrase goes, there does need to be a review of social and health support for people requiring care and also for carers themselves. There needs to be more recognition of the role that carers play. We've got populations ageing. The role of informal carers is only going to grow. I think the last estimate was that about 9 million people in the UK are providing some kind of unpaid care. And I think while most people do it willingly, that doesn't necessarily make it easier. So, I think we need to look quite carefully at this role and recognise how important the role of unpaid carers actually is.
Lia Demou:
Elise, your work was widely reported in the news, are you aware of any other impacts that your work may have had?
Elise Whitley:
So, we were pleased to see that it was picked up by the news, which hopefully means it is striking a chord with people and will perhaps start a dialogue. But it's also recently been quoted in a UK Parliament research briefing on the mental health impacts of the pandemic on adult mental health, which is good to see.
Alastair Leyland:
And as always, our last question is what are the impacts, eh, the implications of this work for health inequalities?
Elise Whitley:
Well, I think sadly the results indicate that a group who were already doing badly before the pandemic are now doing even worse as a result of the pandemic. And so those inequalities are widening. And I think it's also important to recognise that carers are already in groups who are maybe not doing so well, so they're more likely to be women, they're more likely to be older, they're more likely to have a health condition themselves, and they're more likely to be from a lower socioeconomic group. So, already those are groups who are doing less well, and I think the evidence from this work is that if anything, inequalities are widening. So as always, many implications for health inequalities more generally.
Lia Demou:
And with that, I'd like to thank Dr Elise Whitley for speaking to us today on 15 Minutes on Health Inequalities and for raising all these important issues around the role of a carer. Thank you, Elise.
Elise Whitley:
Thank you.
Alastair Leyland:
And details about where to find the paper that this was based on, together with information about the participants in the podcast, can be found in the podcast notes. If you're interested in the subject, please cheque for the 15 Minutes on Health Inequalities podcasts wherever you normally get your podcasts and thank you all for listening.