Becoming an expert: exploring how dementia community-based support services have adapted during the pandemic

Picture of young woman sitting at a desk

Thaïs Caprioli is studying towards a PhD in health and social care services research. She is based in the Department of Primary Care and Mental Health in the Institute Dementia Research group and is in the final year of her studies. Focusing on the use of information communication technologies (ICT), her research explores how dementia community social care and support services have adapted during and following the Covid-19 pandemic in the UK.

A little bit about me
I have a background in physiotherapy and have worked with people with dementia and unpaid carers. I chose to undertake a PhD in this topic as reducing inequalities in access to community-based support services is important to living well with dementia and is something that I have a keen interest in.

What are community social care and support services, and why are they important?
Following a dementia diagnosis, post-diagnostic support includes all services that address people with dementia and unpaid carers’ presenting needs. Community social care and support services form part of post-diagnostic support and are services that address non-medical needs.  Provided by a mixture of sectors (public, private and voluntary), services may include peer support groups, paid home care, respite care and day care centres. Accessing support services is crucial to living well with dementia, but sadly, access remains unequal.  

Before the pandemic, most community social care and support services were accessed in-person. However, the Covid-19 public health measures caused, at least temporarily, the provision of in-person services to stop. During this time, digitally enabled solutions were deployed to continue supporting some people with dementia and unpaid carers. Today, ICT still features within service delivery. My research aims to explore the use of ICT during the pandemic, and to help guide its use within the current hybrid landscape and during any possible future public health crises.

What do I do?
Throughout my PhD, I have worked with two public advisors (a former unpaid carer and a person living with dementia). Public involvement has helped to ensure that the right questions are researched on meaningful topics. As part of my PhD, I have conducted a systematic review, longitudinal survey, and semi-structured interviews.

My research sought to understand how ICT has been used to deliver post-diagnostic support and explore service recipients’ views on accessing services remotely. Furthermore, my research has investigated how community social care and support services adapted throughout the pandemic – both in terms of the types of services and how these were delivered. Lastly, I interviewed support providers, people with dementia and unpaid carers to understand how the delivery and access to support has been impacted by the pandemic, and what this means for current and future service delivery. Overall, my findings suggest that while using ICT to access support is possible and can be a positive route that benefits people with dementia and unpaid carers, not everyone has access to, or is able to easily navigate the technology.

As part of my PhD, I am linked up with the Liverpool Dementia & Ageing Research Forum, a public forum to share knowledge about dementia and network.

What now?
My research adds to the existing evidence base that suggests that the use of ICT can facilitate and hinder access to support services. As I head into the final months of my PhD, I am combining the findings from all three studies to draw further conclusions and implications for practice. I hope that my findings will help the almost one million people living with dementia and their estimated 700,000 unpaid carers in the UK to have better access to community social care and support services.

Thaïs’ research is funded by the National Institute of Health and Care Research Applied Research Collaboration North West Coast (NIHR ARC NWC).