Translating evidence of costs and benefits of support at home in later stage dementia: to the NHS, social care and family carers

Background
Dementia is a major health and social care challenge with over half of those with dementia living at home. Finding ways of supporting people with dementia and their carers, maintaining their wellbeing within resource constraints, has been termed the £20 billion question. In our previous Programme Grant for Applied Research with NIHR, ‘Effective Home Support in Dementia Care' we investigated cost-effectiveness of support in both early-stage dementia, through a randomised trial of guidance on memory aids, and in later-stage dementia, through analysis of naturally occurring packages of care received by people with dementia and their carers. The latter looked at different services received, from health, social care and the third sector and whether different intensity packages led to enhanced outcomes, and costs, over others. We disseminated findings from this work, through an on-line toolkit for commissioners and managers.

Since our previous Programme finished, in March 2020, however, research emerging out of the Covid-19 pandemic has shown reduced home support for those with dementia, particularly in its later stages: support services have stopped or been withdrawn; those still continuing have reduced considerably their contact hours. This has led to uncertainty and highlighted the need for greater support for already stretched and overburdened carers. As we potentially emerge from the pandemic, commissioners and family carers, from their different perspectives, have a lack of information on how newly arranged services could maintain quality of life, allay carers’ stresses and what the costs of these supports may be. Such information and evidence would be useful to commissioners, especially those in social care, as they now plan and reconfigure support services. It could be useful for carers as they decide from which services they may derive most benefit and what the costs may be, particularly if they are funding care themselves.

Aims and objectives
In this project, funded from an NIHR Programme Development Grant, we will build on this existing programme to mobilise knowledge to NHS and social care commissioners and, crucially, family carers of those with dementia. The Programme produced a large, unique data set, which could provide such tailored information to these stakeholders. We plan to re-analyse the data in ways not possible from our previous protocols and provide customised, accessible, new information in an interactive format. Our objectives are to:

 Re-analyse the existing data of costs/benefits to distinct stakeholders: the NHS, social care, and family carers and in terms of people with dementia in different circumstances (sub-groups).

 Disseminate data and findings in an interactive way online for use by different stakeholders.

 Link this resource, via a Research Partnership, with multiple organisations, who will use findings to benefit those planning and using support services.

Development work plan
Over 12-months, we will re-analyse data, generating findings of costs/benefits of different services, for sub-groups, and for different parties, including using incremental net-benefit regression. Data will be openly available, via a data paper and disseminated via an interactive online resource. We will link this resource to our host Trust, Pennine Care NHS Foundation Trust, social care commissioners/Research & Intelligence (LARIA), Institute for Health and Social Care Management (Social Care Innovators and Research Sub-Group), Join Dementia Research (NIHR) and Together in Dementia Everyday (TIDE), a national charity representing carers of people with dementia.