(pic credit: Dementia Researcher)

by Dr Clarissa Giebel – Department of Primary Care & Mental Health

What is my research about?

My research is looking at how we can enable people living with dementia live independently and well within their own home for as long as possible. Dementia affects an estimated 850,000 people in the UK, with the number expected to rise to over 1 million by 2025. But dementia doesn’t only affect those who live with the condition. Family and friends who are providing unpaid care worth up to £13 billion a year are also significantly impacted upon by dementia.

Once a person receives diagnosis of Alzheimer’s disease dementia (the most commonn form) or a rare form, such as behavioural variant fronto-temporal dementia or Lewy Body dementia, people with dementia are often left without much guidance, and without much knowledge of what types of care and support they can access. This lack of support can be enhanced by socio-economic factors. For example, where someone lives (disadvantaged or less disadvantaged neighbourhood), how many years of education someone has, or someone’s ethnic background have all been linked to how people are accessing services.

Whilst there are great inequalities within the North West Coast region alone, my research not only focuses on inequalities within a high-income country, but I am also working with collaborators in Colombia and Uganda to explore how people with dementia living in rural regions are receiving dementia care (Colombia) and how COVID-19 public health restrictions are affecting the lives of older adults in Uganda. It is important to link up internationally and exchange knowledge, and to really understand how we can improve dementia
care globally.

COVID-19 dementia research

In light of COVID-19, my research has temporarily shifted to focus on the effects of COVID19 related social support service closures on those affected by dementia. Considering the lock down and measures of social distancing present, social support services, such as day care centres, social activities in the community (i.e. singing and dancing groups), befriender services, or paid carers, have all been in some way affected having had to shut down for the time being.

This is likely to have a huge impact on the care that people are receiving. Our study (www.liverpool.ac.uk/coronavirus/research-and-analysis/dementia/) has been funded by the University’s COVID-19 Strategic Research Fund, and we have just completed

Study 1. As part of that, we have spoken to 50 people with dementia and unpaid carers about their experiences of COVID-19 related social support service closures. Whilst busy analysing and writing up the findings, there is so much rich information coming out that we have enough data for several papers. It appears that COVID-19 has had an incredibly negative indirect impact on the lives of people with dementia and carers.

To complement that, we are also running an online (or telephone) survey as we are interested in how these social support service closures are affecting the long-term wellbeing of those affected by dementia and older adults (aged 65+). We will ask people again after 6 and 12 weeks about how their well-being might have changed. So far, we’ve already had 600 people take part, and we’ve effectively over-recruited within 48 hours of the survey going live (initial target was 150)!

Involving the public

But research is only meaningful by involving those who are affected by dementia. That’s why each of my projects and those that I am involved in involves public advisers. Also, to make sure that research is more inclusive and has more impact, whilst also ensuring that not only academics, but also clinicians, service providers, and decision makers are linked up in the Liverpool region, I set up the Liverpool Dementia & Ageing Research Forum last year (www.dementiaresearcher.nihr.ac.uk/guest-blog-setting-up-a-dementia-and-ageingnetwork/).

Every two months, I am organising a free public seminar, where an academic or clinician is sharing their work, and there is plenty of time for discussion and questions. At the last seminar in March, shortly before lock-down(!), nearly 70 people, including many affected by dementia, attended the seminar listening to and asking questions to Dr Rhys Davies from the Walton Centre, talking about rare dementias.

With COVID-19 having put a hold on everything temporarily, we should be back up and running in September, so feel free to come along!

Follow Clarissa on Twitter @ClarissaGiebel