Dr Doug Brown, Chief Policy and Research Officer at Alzheimer’s Society, discusses why more investment is needed in dementia research
Dementia is the biggest health and social care challenge we face. In the UK, there are 850,000 people living with dementia – this number is set to rise to over 1 million by 2021. It’s a condition that affects 1 in 6 people over the age of 80, yet dementia research remains vastly underfunded when compared to the huge economic cost of the condition.
The term dementia is used to describe a set of symptoms, triggered by diseases of the brain, which cause a loss of brain function. Everyone experiences dementia differently but some of the most common symptoms include memory loss, confusion and difficulties with speech and understanding. Often, the changes tend to start small but gradually get worse becoming severe enough to affect daily life. Of the top ten causes of death, it is the only condition that we can’t cure, prevent or slow down.
It is only through research that dementia can be fully understood and defeated – but up until recently research into dementia has been largely neglected. A study by Oxford’s Health Economics Research Centre revealed that research investment into cancer was thirteen times higher than investment in dementia research. It is vital that dementia research receives the level of investment that matches the economic and human cost of the condition, which is currently estimated to be £26 billion a year in the UK.
While we are taking steps in the right direction with global political commitments and increased government funding for dementia research, studies into care have lagged behind biomedical research. The largest consultation of people affected by dementia, ‘Turning up the Volume’, revealed that people living with the condition want to see this change, with the report highlighting that dementia patients currently don’t get the same quality of care from health and social care services. Until a cure and better treatment options are developed, it is, therefore, critical to explore and invest in dementia care on an equal footing with biomedical research.
Alzheimer’s Society is a world leader in biomedical research with programmes ranging from understanding the molecular basis of the diseases that cause dementia through to our ground-breaking drug discovery programme. In addition, Alzheimer’s Society is leading the way in rebalancing investment between biomedical and care research and just this last year awarded £5.6 million to three Centres of Excellence across the UK – our biggest ever single investment into dementia care esearch. The three Centres of Excellence will focus on the following three priority areas over the next five years:
Developing a better understanding of what it means to live well with dementia
It is crucial that people with dementia are able to live well and have a good quality of life – yet little is known about how to improve quality of life for people with dementia.
The project, ‘Improving the experience of Dementia and Enhancing Active Life’ (IDEAL), led by Exeter University, aims to identify what factors help someone to live well with dementia and what affects their quality of life as their condition develops. The study is made up of 1,570 people with mild to moderate dementia, 50 people with advanced dementia and 1,300 carers enabling the researchers to gain a deep understanding of their experiences of living with dementia over a six-year period. The findings will be used to understand what strategies and initiatives can be put in place to improve the quality of life for people with dementia and how changes to policy, healthcare practice and the provision of services can help.
Improving support after a dementia diagnosis
Recent investigations have highlighted the disparity of support that people with dementia have received after a diagnosis, including Alzheimer’s Society’s ‘Dementia 2015’ report.
Seeking to improve the quality of care and support people with dementia receive, Newcastle University’s ‘Primary care-led post diagnostic Dementia care’ (PRIDEM) project is aiming to develop and evaluate suitable, feasible and sustainable models of care, which are centred on the person receiving the dementia diagnosis. Working in close partnership with local health and care service providers, as well as people living with dementia and their families and carers, the researchers will explore their experiences of support after a diagnosis. The aim is to develop models that will detail how support after a diagnosis will be led by primary care services such as community-based services and GPs.
Exploring better ways to support people with dementia to live independently in their homes
Most people with dementia want to remain living in their own homes for as long as possible, often they are able to do this aided by home care workers or family carers. However, Alzheimer’s Society’s Fix Dementia Care campaign found that only 2% of people affected by dementia believed home care workers had sufficient dementia training. This lack of training can cause relationships to break down and severely affect the care of the person with dementia.
The University College London (UCL) aims to tackle this break down in care by developing a better understanding of how independence at home can be improved for people with dementia. Through their ‘New interventions for Independence in Dementia’ project (NIDUS), the university will work with people affected by dementia, carers and home care workers to develop training on how best to care for a person with dementia. This evidence- based programme will develop a cost-effective way to improve care at home, whilst guaranteeing that professional carers receive much-needed training in dementia care and help family carers to reduce stress and improve relationships.
Research will beat dementia – but more funding is needed. Local health and social care services are faced with many complex issues, as well as limited resources. To offer the highest standard of care, commissioners rely on research and evidence-based practice. The Centres of Excellence are building this evidence base in the area of dementia care – and making it available to policy-makers and practitioners.
This is the first step towards improving the lives of people with dementia but investment is vital if we are to continue delivering real change for people affected by dementia.
Dr Doug Brown
Chief Policy and Research Officer
Tel: +44 (0)330 333 0804