How has the pandemic affected people with dementia and carers?

Posted on: 11 May 2021 by Dr Clarissa Giebel in May posts

elderly person receiving advice from medical person
Dementia patient with carer

Dr Clarissa Giebel is a Research Fellow within the University's Institute of Population Health. Her research focuses on enabling people living with dementia to live well and independently at home for as long as possible, whilst addressing potential health inequalities in accessing the right care. During the pandemic, she has been leading the first Covid-19 dementia study in the country, exploring the effects of social service closures on the lives of people with dementia and unpaid carers. In this blog she tells us more about the study.

'It’s been over a year now that our lives have significantly changed. Staying home, being allowed outside again and going shopping, then staying home again, but you can go out when you live in a different area, then lockdown again. Wear a mask but not in every place, then wear it in every public place. You are allowed to see a few friends outside, then only one within your bubble. We have lived through a lot of changing public health restrictions in those past 12+ months.

To be fair, even I sometimes struggled knowing what we were allowed to do and what we were supposed to avoid. But I don’t have dementia - at least I don’t think I do!  Now picture someone with dementia, who has cognitive difficulties and may struggle remembering things. I say may, because there are numerous different types of dementia, including Alzheimer’s disease dementia, vascular dementia, and Lewy body dementia, and each subtype being characterised by a different symptom profile. How are you supposed to remember what you are allowed to do, especially when you are at the more advanced staged of dementia?

HM Government Covid-19 signage

UK Government signage

To understand how people with dementia understand restrictions (and thus are keeping safe if they adhere to them), but more generally to understand the wider impacts of the pandemic on those living with or caring for someone with dementia, we conducted a national, and now international, study at the University of Liverpool.

So what did we do? Back in April 2020, we spoke to 50 people living with dementia and unpaid carers (family members or friends), and followed up 20 of those a few months later. We also conducted a three-time point online and telephone survey, asking people about their usage of social support services - such as day care centres, support groups, respite care - before and since the pandemic, and their mental well-being.

We found a whole heap of negative impacts on people with dementia and unpaid carers. Where to start? One of the most immediate impacts was the temporary closure or generally restrictive access to social support services in the community. Where people with dementia would usually attend a day care centre a few times a week maybe, or go to singing and dancing groups, they were suddenly faced with having to stay home, not seeing their peers, and getting no social engagement. This quickly, sadly, seemed to have an effect on those with the condition, as people with dementia appeared to deteriorate faster than before the pandemic.

Elderly gentleman wearing facemask looking out of the window

But let us not forget the many hundred thousands of dementia carers in the UK. They faced really difficult decisions as to whether to continue the little care that was left available, which was paid home care to support meal times or dressing and bathing for example. Many unpaid carers decided not to, for fear of increased virus transmission from care staff. But where they decided to discontinue care, carers were faced with picking up those additional caring duties, which left many overburdened.

Since then, we have also replicated this study and expanded into Australia, Italy, Poland, and India. Whilst we are still continuing our analysis, early findings indicate very strong similarities of the impact of the pandemic globally on those with dementia and those caring for loved ones. However, we also started noticing some cultural variations in expectations of care, but more about that another time!

However, I hope this insight into our research has already shown the sheer detrimental, indirect, impact of COVID-19 on dementia and dementia care. Social care wasn’t functioning well in the UK before the pandemic, but it has certainly shone a stark light onto the flaws of the sector - mostly due to under-funding. Hopefully, highlighting these shortcomings will help to improve the sector, so that anyone with dementia can access the care they need and continue to live well.

 

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