Abstract

Dementia has enormous impacts on health and quality of life for people with the illness, their families and other people who care for them. Many people with dementia need care in many areas of their lives, and use a range of health and social care services, as well as getting support from their unpaid carers. Many people with dementia eventually move into care homes. The costs of caring for people with dementia can therefore be high. As the UK population ages over the coming decades, the number of people with dementia will increase considerably. A big challenge facing the country is how to provide high-quality treatment and support to these individuals in ways that are acceptable to them and at a cost considered by society to be affordable.

In England, care and support arrangements are guided by the National Dementia Strategy; there are similar commitments in Scotland, Wales and Northern Ireland. Last year the Prime Minister announced his personal ‘Challenge’ on dementia. Dementia is now getting unprecedented attention: it is a high priority for government, the NHS and local councils. Our research will feed new evidence into this national debate to help decision-makers at many levels in health and social care systems to meet the needs and respond to the preferences of people with dementia and their carers in ways that make best use of the country’s resources.

We will examine existing data to get a clearer understanding of the links between a number of factors: the characteristics of individuals and families, their dementia-related and other needs for care and support, and the services and treatments that could be available to them. We will look at the effects of care, support and treatments on outcomes for individuals and carers – how those interventions can improve their health and wellbeing – and also on the costs of support.

With this information we will first make projections of how many people there will be with dementia over the period to 2040, what family or other unpaid support they are likely to have available, and what it will cost to provide care services. Second, we will examine whether there are better ways to support people with dementia and their carers by introducing new forms of care and treatment. For this part of the research we will rely on previous studies that have examined whether these interventions improve health and wellbeing, and at what cost. We will identify those ‘new ways’ by reviewing previous studies of dementia care and treatment (and also reviewing ways to prevent or delay dementia). We will look for evidence on, e.g., medications, cognitive stimulation and other therapies, exercise programmes, nutrition advice, telecare, community initiatives, respite and training for carers.

We will collect new data from 300 people with dementia and their carers, looking at their lives, needs and care at two time points over 12 months. We will not be testing any interventions with these people. Instead we need information to help make the best use of data that we can draw from previous studies. We will also conduct interviews and set up focus groups so that we can get ‘experiential’ evidence, including information on people’s preferences.

We will pull all this evidence together to simulate what would be likely to happen if interventions with proven benefits for people with dementia and/or their carers were more widely adopted nationally over the coming decades. We are particularly interested in the economic implications: how the future costs of care might be reduced while health and wellbeing are improved.

We will develop a publicly available tool (accessible via the Web) to enable commissioners, providers, charities, individuals and families to use our evidence to make projections of future costs under different assumptions about population needs, services and treatments. We will work with people with dementia, carers and other potential users of our research at all stages of the project.

Aims

We will examine existing data to get a clearer understanding of the links between a number of factors: the characteristics of individuals and families, their dementia-related and other needs for care and support, and the services and treatments that could be available to them. We will look at the effects of care, support and treatments on outcomes for individuals and carers – how those interventions can improve their health and wellbeing – and also on the costs of support.