Alzheimer’s Society ‘Centres of Excellence’ could make a life-changing difference for people affected by dementia

The ‘Centres of Excellence’ will focus on key priority areas within dementia care research over the next five years.

The centres, located at the Universities of Newcastle and Exeter and University College London, are part of a ground-breaking initiative by the charity to address the urgent need for research into dementia care. Focusing on ways to measure and improve quality of life, access to post-diagnostic support and training for homecare workers, the interventions developed by each of these programmes could make a life-altering difference for people affected by dementia.

The investment comes at a time of acute public awareness of the challenges of social care reform, following a frenzied election process dominated by debates on the ‘dementia tax’. With increased focus on the funding and development of the social care system, the importance of research into ways to improve care for people with dementia is more relevant than ever.

There are 850,000 people living with dementia in the UK and this is set to rise to a million by 2021. Dementia costs the UK economy £26.3bn a year. With such huge financial implications on a system already starved of funding, the government urgently needs to adopt a more cost-effective approach that starts with preventing or slowing the rate that people need to access these services. Investing money in ways to improve quality of life and the quality of support people affected by dementia receive from the start of the care pathway will alleviate the demand and reduce the costs incurred at a later stage. Better post-diagnostic support and care at home can empower people to remain independent for longer, minimise unnecessary hospital admissions and help avoid early entry to care homes.

Alzheimer’s Society is the biggest charity funder of dementia care research, with a third of all its research funding focusing on this area. These grants will fund the first three of eight planned Centres of Excellence.

• Professor Linda Clare from the University of Exeter will allow us to truly understand what is impacting the quality of life of people with dementia. She will continue and expand an existing study - Improving the experience of Dementia and Enhancing Active Life (IDEAL), which aims to identify ways to measure, and then target to improve, aspects of quality of life for people with dementia. Alzheimer’s Society’s funding allows this project to continue into a second 5 year phase, and importantly, to include the experiences of people from Black and Minority Ethnic backgrounds, as well as people in the advanced stages of dementia.  The researchers will gain a representative picture spanning ten years of what it is like to live with dementia in the UK, and devise effective interventions to create change. This longitudinal study may also help to offer insight into how changes in the social care system, such as cuts to funding or local closures, impact a person. The findings will give us scope to hypothesise on a correlation between these changes and shifts in the person’s perceived quality of life.
• Professor Louise Robinson at Newcastle University will tackle the postcode lottery of post-diagnostic support for people with dementia. As a dementia diagnosis is often given through secondary services, such as memory clinics, access to these services varies wildly across regions and CCGs. Professor Louise Robinson at Newcastle University will lead an expert team to examine whether receiving support through primary care routes, such as GPs or community services, could improve the support people receive. Collaborating with NHS Trusts and numerous individual GP surgeries, they will develop and test new guidelines for dementia care that are cost-effective and sustainable, and most importantly provide the person with dementia with consistent and high-quality support after they are diagnosed. This approach could put an end to the unfair gamble that determines the availability of support by location.
• The third centre will address the shocking absence of dementia training amongst care workers. Although 60% of people who receive homecare have dementia, just 2% of people affected by dementia believe home care workers had sufficient dementia training. This lack of training can cause breakdowns in these relationships that can severely affect the wellbeing of the person with dementia. Dr Claudia Cooper at UCL will lead on understanding how to improve independence at home, by training and preparing family carers and professional care workers who make home visits to provide better care for the person affected. This training, developed in collaboration with homecare providers, will offer a cost-effective, evidenced way to improve care at home.

Colin Capper, Head of Research Development at Alzheimer’s Society, said:  

'These grants offer real scope to transform the way that care in the community is delivered for people with dementia.

'By researchers working in collaboration with people affected by dementia, NHS Trusts, care providers and primary care services, we are developing interventions that are evidenced, cost-effective and scalable. The next step will be to overcome the barriers of translating this research into improved care and support in a system that has been starved of funding for decades.'

Dr Louise Robinson, Lead Researcher at the Newcastle Centre of Excellence, said:

'We want to address what resources are needed to provide a better quality of care, and how these can be successfully delivered; understanding the costs of this care against the long-term benefits. This will significantly support research in this area here in Newcastle and we’re positive that it will make significant improvements for patients and their families.'

Through extensive consultation with over 500 people affected by dementia, carers and Alzheimer’s Society staff and volunteers, four highest-priority areas of dementia research were selected:

• Care in advanced dementia
• Support after a diagnosis
• Independence at home
• Improving quality of life

The winning research programmes addressed one or more of these areas and were selected from over 29 submitted proposals for funding.

As part of the charity’s new five-year strategy, Alzheimer’s Society will drive the research agenda by putting the knowledge and experiences of people with dementia at the heart of all its research investments. This includes investing £50 million in the UK’s first dedicated Dementia Research Institute and a further £100 million into pioneering research across the spectrum including biomedical, prevention, assistive technology and care research. Our ambition by 2022 is to have made our biggest ever investment in dementia prevention, care and cure research. This will transform the landscape of dementia research, here and abroad.

Read more about this exciting announcement on our blog.