It is only through research that the causes of dementia can be fully understood, allowing us to develop new treatments and potential cures and to improve the care for people with dementia. Until recently, research into dementia has been largely neglected, with the amount spent on dementia research being dwarfed by spending on research into other conditions such as cancer and heart disease.
We're now making steps in the right direction with global political commitments and increased government funding for dementia research. It is vital that the increases in funding continue until spending on dementia research reflects the huge human and economic cost of the condition. This investment must be split between biomedical research to develop new diagnostics, treatments and prevention strategies, and care research to improve the care and services available to people living with dementia and their families and carers. As well as securing investment in research, we must prioritise the translation of research into practice and the active involvement of people with dementia in all stages of the research process to make sure it is relevant and shaped by their needs.
2. Alzheimer's Society campaigns for:
- Dementia research should receive a level of investment that matches the economic and human cost of the condition. The total cost of dementia to the UK is estimated at £26 billion a year but only £90 is spent on dementia research per patient per year (Alzheimer's Society, 2014). This is only a fraction of the amount spent on research into some other health conditions. Progress is being made in securing further investment in dementia research. Since 2009/10, annual government and charity spend on dementia research has increased from £43.6 million to almost £74 million in 2013. However, in 2012/13 cancer research still received seven times that spent on dementia (Alzheimer's Society, 2014). The UK needs a national and long-term plan for dementia research that it is funded in proportion to its impact on society and with greater co-ordination between funders of dementia research.
- People affected by dementia and their carers should be given greater opportunity to participate in clinical trials. Currently less than 4% of people with a diagnosis of dementia are involved in a clinical research study (Department of Health, 2012a). The Prime Minister's challenge on dementia (Department of Health, 2012b) called for 10% of people with dementia to take part in research. To help achieve this, the opportunity to participate in research will be one of the conditions for accreditation of memory services through the Memory Services National Accreditation Programme (MSNAP). In addition, both Alzheimer's Society and Alzheimer's Research UK (ARUK) are working with the National Institute for Health Research (NIHR) to launch a new service called Join Dementia Research which will help people to find recruiting dementia studies in their local area.
- People affected by dementia and their carers should be given greater opportunity to be involved in the design and process of research. People with direct experience of dementia can make valuable contributions to the design and direction of dementia research projects, particularly those addressing dementia care and services. There should be more opportunities for patient and public involvement in dementia research in the UK. Alzheimer's Society's work with over 250 carers, former carers and people with dementia who help to shape our research programme at all stages.
- People with dementia and carers should have access to the best evidence-based treatments. There is a high level of unmet need among people with dementia and few treatments available. Systems and incentives must be put in place to stimulate treatment development and ensure that, when new treatments become available, they are rapidly accessible to people with dementia. This has been achieved before with HIV treatments.
- People with dementia and carers should have access to the best evidence-based care. There is considerable ongoing research into how care can be delivered and organised in a range of different settings, to improve quality of life for people with dementia. More emphasis should be placed on ensuring this evidence is translated into practice. Organisations that commission and provide services for people with dementia must commit to supporting the implementation of evidence-based interventions and strengthening links between academia and health and care services delivery. Research evidence must also be made readily accessible to those who purchase and use services.
- Global commitment. The UK government used its presidency of the G8 nations to hold a summit on dementia in December 2013. The G8 significantly increased the amount of funding for dementia research and set a global ambition of identifying a cure or a disease-modifying therapy a by 2025. A World Dementia Envoy was also appointed to draw together international expertise on dementia and to monitor progress towards this goal. Alzheimer's Society welcomes this global commitment and calls for the momentum to be sustained in order to deliver real improvements in quality of life for people living with dementia and their families.
3. References and further information