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Dementia research must study care as well as cure

This article was taken from: https://www.theguardian.com/social-care-network/2018/feb/19/dementia-research-cure-care

By Doug Brown

The need for a cure for dementia is pressing, but practical solutions to benefit those with the condition are also vital

Social care faces an annual funding gap of £2.3bn by 2021 – by which time nearly a million people in the UK will be living with dementia. With no way to slow or stop the diseases that cause dementia, it is set to be the 21st century’s biggest killer.

While the NHS can’t offer people with dementia the same options as for other long-term conditions – because there is no cure or effective medical treatment – people with dementia must rely on the cash-starved and crumbling social care system. The social care and dementia crises go hand in hand.

Solving the care crisis goes beyond throwing money at the situation. Funding is desperately needed, of course, but we can’t simply pour more cash into a fundamentally flawed system. After decades of squeezed budgets and successive governments failing to put a long-term plan in place, we have a limited social care offering that too often leaves people with dementia footing the bill.

In the battle to meet rapidly rising demand with ever-shrinking resources, care providers must be as efficient and effective as possible. So why does investment in dementia research heavily focus on a cure for future generations, while less than 5% of funding goes to researching the best care possible for all those affected today?

The need for a cure for dementia is as pressing as ever, but we also need care research to develop practical solutions that can benefit people with the condition and their carers. Improving knowledge and practices among health and social care professionals, as well as the quality and inclusivity of the wider system, is just as important as developing medical treatments.

A new Alzheimer’s Society report to be published in the International Journal of Geriatric Psychiatry asked researchers, people with dementia, and the professionals who support them to help create a roadmap for the research neededto deliver these improvements. With input from Public Health England, the Department of Health, the National Institute for Health Research, the Economic and Social Research Council and academics from 11 universities, the roadmap offers five key goals:

  • Increase knowledge of risk factors to prevent future cases of dementia.
  • Maximise the benefits of seeking and receiving a dementia diagnosis.
  •  Improve quality of life for people affected by dementia.
  •  Enable the dementia workforce to deliver improved practice.
  •  Optimise quality and inclusivity of health and social care systems.

These broad research goals are broken down into recommendations and an action plan that will help us achieve them.

One of the key recommendations is creating professional networks across health and social care to better involve the workforce in dementia research. This could be sharing details about the challenges of your work to inspire new projects, advising research teams to consider practical implementation challenges, or conducting your own research.

t’s standard practice for dementia researchers to involve people with the condition in their projects, but this engagement must extend to those who care for them if we are to address practical problems and develop credible solutions.

The roadmap also suggests recording research involvement in reports by Healthwatch and the Care Quality Commission (CQC). We know that care settings involved in high-quality research can deliver better patient outcomes, and the CQC has announced new indicators to recognise hospitals’ involvement in this. It would be great to see this extended to care and other regulated settings which are home to many people who live with dementia.

The prime minister’s challenge on dementia 2020 for England and the World Health Organisation’s global dementia action plan call for a doubling of research into dementia by 2025, but we need that research to tackle care as well as cure. The Alzheimer’s Society is doing just that, investing more than £30m in research across dementia care, cure and prevention.

As we welcome Jeremy Hunt’s expanded title of secretary of state for health and social care – hopefully a sign that the government is at last placing both on an equal footing – we must push for coordination in research as well as policy, so people with dementia get the care they deserve.

 Doug Brown is chief policy and research officer at Alzheimer’s Society