How Do We Navigate The Black Hole Of Dementia Care Research?

How Do We Navigate The Black Hole Of Dementia Care Research?

Every year we invest millions of pounds in academic research, but how are these learnings applied in health and social care practice?

On average it takes 17 years for research findings to reach clinical practice, meanwhile a third of people living with dementia do not receive care supported by current scientific evidence. Worryingly, around a quarter of care provided may not be needed, or could even be harmful.

Demand for social care has risen exponentially in recent years, yet provision is not growing with it, leaving an out-of-date system starved of Government funding and struggling to cope. With the social care crisis blazoned across newspaper front pages on an almost daily basis, why is uptake of interventions and practice that have been proven to enhance the quality and efficiency of the social care system still so slow?

Academics from across the dementia community often describe the ‘black hole’ that follows the publication of research findings. While we understand that black holes are fundamentally important to the structure of the universe, no one knows for sure what goes on inside. This analogy is particularly true for care, services and public health research where navigating the way to implementation is less well understood than, for example, the pathway for bringing a new drug treatment to market.

Delving deeper into this issue, the University of Exeter Medical School, funded by an Alzheimer’s Society research grant, reviewed the current challenges in translating dementia research into practice. The researchers concluded that funding for knowledge mobilisation must be increased urgently if people affected by dementia are going to see the benefits of research into dementia care and treatment.

By funding and providing support to navigate the processes that determine which research is translated into practice, Alzheimer’s Society’s annual implementation grant scheme enables researchers to scale-up care interventions in the real world. And excitingly, we have now reached a stage where we are beginning to see the impact for people affected by dementia.

Earlier this year, The Lancet commission on dementia identified a number of evidenced interventions that can improve care and quality of life for people living with the condition. Two of these programmes of work have now been taken forward through the implementation grant scheme.

The first of these is the Strategies for Relatives (START) programme, led by Professor Gill Livingston at University College London. The programme promotes coping strategies for family carers of people with dementia; a group in which almost half show clinical levels of depression and anxiety. Participants were randomly allocated to receive either their usual treatment, or training and support from START. The latest results from the trial are incredibly positive, with people who received the intervention showing levels of depression 80% lower than those who received their usual treatment. Five years later the benefits were still visible. And yet, despite clear evidence and concerted efforts from the academic community, the START programme is still not widely available to the public – which is why it is now supported by Alzheimer’s Society.

Another intervention funded through the scheme, the GREAT trial, will offer cognitive rehabilitation to people with mild to moderate dementia and aims to support independence, choice and self-determination. The therapy is conducted in people’s own homes and involves setting realistic and personally meaningful goals, such as re-learning how to use household appliances, in collaboration with a rehabilitation therapist. The therapy aims to improve how people with dementia go about achieving daily tasks that we can often take for granted. The researchers, based at University of Exeter, aim to use this implementation grant to scale-up the delivery of cognitive rehabilitation therapy and will work with 15 NHS and social care organisations across the UK to do so.

But it’s not just academics that play a part in pushing forward research. The opinions of those living with conditions like dementia are a vital part of putting research into practice effectively. This is why Alzheimer’s Society’s Research Network of volunteers – people with dementia and their care partners – helped to create the implementation grant scheme. All applications to the scheme must be supported by a person living with dementia, to ensure that they agree that the research is important and necessary.

The findings from the Exeter review have reinforced Alzheimer’s Society’s commitment to support research that leads not only to new knowledge, but also to improved practice and care. By 2021 there will be one million people living with dementia, but we are still without a cure or disease-modifying treatment. With the desperate lack of available funding for social care, it’s important to look at ways to make our existing services better, more cost-effective and impactful. We hope that our research funding will provide opportunities for more researchers to work together with providers of care and people affected by dementia, to translate their findings into tangible ways to improve care and support for the growing number of people with dementia.

For more information about Alzheimer’s Society’s Implementation grant scheme, go to:


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