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Coronavirus and dementia

Submitted by Clarissa Giebel, MSc
University of Liverpool, NIHR ARC NWC

In the past few weeks, things have changed so rapidly it was difficult to keep up with them. National (almost global) lockdown, and extended self-isolation periods for the most vulnerable in our society. That does include older people, including those living with dementia.

When the lockdown was imminent, and self-isolation was recommended, many unpaid carers I spoke to both as part of my research and as public advisers were seriously concerned about the potential impact COVID-19 could have on the social care system and social support services. Now, care homes have been closed off, with severe issues of residents contacting and spreading the virus. Staff become infected easily too, which places huge limitations on how care can be provided. More so, unpaid carers are in many cases not allowed to visit their loved ones at the care home anymore.

With the coronavirus outbreak come many public health restrictions, including lock down and various forms of social distancing, and temporarily shutting down face-to-face gatherings. This has a huge effect on social support services in dementia, which are vital to maintain a good quality of life for those living with dementia as well as their unpaid carers. Services include day care centres, respite care, peer support groups, befriending services, as well as social activities in the community, such as singing and dancing groups.

Without any current evidence on how COVID-19 is impacting the lives of older people and those affected by dementia directly, except for published commentaries (i.e. Wang et al., 2020), we urgently need to conduct research into this.

Currently, we are running the very first UK study at the University of Liverpool looking at the effects of COVID-19-related social support service closures on the lives of those living with dementia, unpaid carers, and older people.

The first project is a qualitative telephone interview study, where we are trying to understand the experiences of exactly how these service closures have affected people’s lives. We have now finished talking to 50 people with dementia and unpaid carers, and are busy analysing and writing up the findings. Save to say, COVID-19 has had a hugely negative impact on dementia care, on many different levels.

Our second study, an online survey, is looking at how COVID-19 related social support service closures affects the well-being of people with dementia, unpaid carers, and older people in the long-term. Participants are asked to complete the survey three times (Week 1, 6, and 12). Over 600 people have already taken part, and we are hoping that findings will have an impact on how social support services are provided in the long-term, adapting to the potentially long-lasting social distancing requirements to continue providing vital support and care for dementia. But findings might also provide much needed evidence for the need of services to adapt to provide better remote support to those people living in more rural areas, and thus generally struggling accessing the right care they need. So whilst corona virus is going to stay around for some time, there are learnings we can take that will have implications for life after corona.

For further reading:
Wang et al. (2020) - https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(20)30755-8/fulltext

Dr. Giebel is a dementia researcher specializing in everyday functioning and enabling people with dementia to stay in their own home for as long as possible. In her current role at the University of Liverpool and at the NIHR ARC NWC, she particularly focuses on health inequalities in people with dementia and their carers, working on both national and international projects.

Acknowledgements

Acadia Pharmaceuticals Otsuka Pharmaceuticals Cambridge University Press Avanir Pharmaceuticals
CORPORATE COUNCILS