Abstract

Dementia is a major health and social care challenge with over half of those with dementia living at home, around 400,000 people in England. 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 PGfAR, Effective Home Support in Dementia Care’ we investigated cost-effectiveness of support in both early-stage, through a randomised trial of guidance on memory aids, and in later-stage dementia, through analysis of naturally occurring packages of care for people with dementia and their carers. The latter looked at services received and whether different intensity packages led to enhanced outcomes, and costs, over others. We disseminated findings 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reduced home support for those with dementia, particularly in its later stages: support services have stopped or been withdrawn; those still continuing have reduced considerably their contact hours.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 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 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. 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, social care commissioners/Research & Intelligence, Institute for Health and Social Care Management, Join Dementia Research and Together in Dementia Everyday, a national charity representing carers of people with dementia.

Plain English Summary

Over half of people with dementia live at home, around 400,000 people in England. There are several different ways of supporting them at home. Services from the NHS and social care, with support from family and friends, are often arranged to help care for people with dementia to help them to live well or as well as they can. In a previous programme we provided evidence of the costs and effects of these services at different stages of dementia. We collected evidence in a toolkit to help commissioners and managers plan and arrange the support that might be needed. Since our previous programme finished, in March 2020, evidence from the Covid-19 pandemic has told us of reduced home support for those with dementia, particularly in its later stages. Support services have reduced or stopped. This has left family carers overwhelmed and uncertain but commissioners, who plan and pay for the care people might need, are also uncertain. There is a lack of evidence on what the costs and benefits of existing and new services might be. Both commissioners and carers of those with dementia tell us they would like this evidence to make better, more well-informed decisions. We are suggesting a project building on data we already have from our previous programme. We will speak to commissioners and family carers of those with dementia to find out what sorts of data might be useful in plugging this gap. We will then re-analyse the data we already have, in different ways, to provide evidence of the costs and benefits of different support services; for people with dementia, their carers and the NHS and social care. We will look at the costs and benefits for people with dementia in different circumstances; those living alone, those with other illnesses, or those living in rural areas. From this, we will provide evidence on-line and in an interactive way so that commissioners and carers of people with dementia can use it to help them make decisions about the sorts of support that make a difference and how much that support costs, and to whom. This on-line resource will be available to several organisations; partners with us in the research. The resource will also include the data itself so that people can see the evidence and where it comes from. We will do this over 12-months, working with the NHS and social care commissioners, organisations promoting evidence in local authorities, a research website for participating in research and Together in Dementia Everyday (TIDE), a national charity representing carers of people with dementia.

Aims

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.