Within the last two decades, the use of information communication technology (ICT) to deliver health and social care services has received considerable attention. The possible role of ICT to increase the number of people accessing care, whilst aligning with a cost-saving agenda, forms an enticing solution to an underfunded health and social care sector which is faced with an ever-increasing demand. The adoption of ICT in practice has been implemented at quite a leisurely pace, that is, until the COVID-19 pandemic caused a widespread shift from accessing post-diagnostic support in-person, to remotely. Post-diagnostic support is important to living well with dementia, and includes all services accessed following a diagnosis that support people with dementia and unpaid carers. In England, the delivery of post-diagnostic support involves multiple sectors and care settings, and services may include dementia medical reviews, information provision, peer support groups, befriending services, day care centres and respite care. The COVID-19 pandemic has provided an opportunity to assess the use of ICT to access post-diagnostic support, highlight its benefits and expose its shortcomings.
I am an NIHR ARC NWC funded PhD student based at the University of Liverpool, and my PhD looks at how people with dementia and unpaid carers engaged with community-based support services during the pandemic. I am interested in exploring how ICT has been used to access post-diagnostic support, and whether the use of technology facilitates or hinders access to these vital services. In this blog, I talk about my findings so far, and their implications to practice and future research.
Brief overview of my PhD to date
The first part of the project consisted of undertaking a systematic review to understand how ICT has been used to access post-diagnostic support remotely, and also to explore care recipients’ views on accessing services remotely. The studies described a range of post-diagnostic support, including exercise classes, therapy sessions, and peer support groups. Remote post-diagnostic support is feasible and certainly benefits some care recipients. However, views towards accessing services remotely vary, and many care recipients preferred services delivered in-person.
In the second part of this project, we conducted a longitudinal survey to understand how the delivery of social support services adapted during the pandemic. Social support services form part of post-diagnostic support and are non-clinical services that aim to support community-dwelling people with dementia and unpaid carers to live well. Services may include befriending services, day care centres, peer support groups and paid home care. We invited social support providers from across the UK to participate in two surveys, and we compared the types of services delivered, and how they were delivered, both before and during the pandemic. We observed an increased in remote delivery, and concerningly, fewer care recipients accessing services.
If you would like to find out more, I hope to share the published papers with you shortly!
Key implications of our findings
Reduced access and utilisation of social support services during the pandemic is concerning and is likely to cause long-term negative impacts. Lacking the ability to access vital services is likely to lead to poorer health and social outcomes, which may translate into greater unplanned hospital admissions or accelerated entry into long-term care facilities. As a hybrid approach to service delivery is likely to continue, we must carefully consider the use of ICT.
What is post diagnostic support dementia? Post diagnostic support (PDS) covers a range of services and information available to help those diagnosed with dementia and their carers, both immediately after diagnosis and onwards
Accessing remote post-diagnostic support often requires connectivity, owning a device and adequate digital literacy. These prerequisites are likely to be influenced by socio-demographic factors, the severity of the dementia symptoms, the type of dementia, and being able to receive some help. People with dementia often relied on unpaid carers to navigate the ICT, and we really need is further research to identify what support is required to facilitate the access of people with dementia to remote post-diagnostic support.
Another important issue to consider, is that access to remote post-diagnostic support may not necessarily translate to service use. Whilst the availability of remote post-diagnostic support was a ‘lifeline’ to some people with dementia and unpaid carers during the pandemic, not everyone had access, and many care recipients prefer to access services in-person. However, public health crises are predicated to occur more frequently. We need more research to document the learnings from the pandemic to help design the delivery of post-diagnostic during future public health crises. The sudden withdrawal of vital post-diagnostic support during the pandemic was alarming, and we must make sure people with dementia and unpaid carers are not left behind again.
So, in summary, the delivery of remote post-diagnostic support may facilitate the access to some people with dementia and unpaid carers. However, the reliance on ICT is likely to result in additional barriers for some. Post-diagnostic support within the hybrid landscape needs to accommodate for people with dementia and unpaid carers who are digitally excluded, or who prefer to access services in-person. This will prevent the creation of new, or widening of existing, inequalities in access and health and social outcomes.
This report is independent research funded by the National Institute for Health Research Applied Research Collaboration North West Coast (ARC NWC). The views expressed in this publication are those of the author(s) and not necessarily those of the National Institute for Health Research or the Department of Health and Social Care.
Thaïs Caprioli
Author
Thaïs Caprioli [1] is a PhD Student at University of Liverpool, undertaking health service research and exploring health inequalities. A passion that stems from her years working with people living with dementia, and as a physiotherapist and as a programme coordinator within a health programme implementing in lower- and middle-income countries. In her spare time she can mostly be found reading a book with a cup of coffee.
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