£16 million European collaboration paves the way for new research into health and social care for neurodegenerative diseases
UK Funders, including Alzheimer’s Society, have united with 15 countries across Europe, Australia and Canada to support international research collaborations into diseases of the brain, including those that cause dementia. The latest Joint Programme – Neurodegenerative Disease (JPND) funding awards represent a €17.5 million (approx. £15.75 million) investment over the next three years.
The JPND programme harnesses the collective expertise of researchers around the world to speed up progress towards new treatments and address shared challenges in health and social care. Alzheimer’s Society, along with Department of Health and Social Care England, Health and Care Research Wales and the Health and Social Care R&D Division of the Public Health Agency (PHA) in Northern Ireland, has committed £2.15 million to the programme from the UK.
There are estimated to be 50 million people in the world affected by dementia in 2018. This number is set to rise to 152 million by 2050. This programme reflects the urgent need for better health and social care for the 850,000 people living with dementia in the UK and their loved ones. Through research, we can identify the best ways to plug this vital gap so that people in the UK can live well throughout all stages of their condition.
UK research teams are involved in eight of the 10 projects awarded funding. These researchers have provided an ambitious, collaborative, multi-disciplinary approach to address an important aspect of health or social care. This might be at a system and services level, right down to the individual level of patients, their carers and families.
Dr James Pickett, Head of Research at Alzheimer’s Society, who led the UK funding of the initiative, says: “One person develops dementia every three seconds across the world. Dementia is a global problem, and we need global collaboration to defeat it.
“Alzheimer’s Society is committed to a world without dementia, but we can’t achieve this on our own. Uniting the Department of Health and Social Care (England), Health and Social Research Wales, and the Health and Social Care R&D Division of the Public Health Agency in Northern Ireland as well as 15 other countries to fund these eight ambitious new global care research programmes, brings us a step closer to making this a reality.
“Our funding supports research in the UK, but we know the reach of our work is far wider. Sharing findings internationally and setting up collaborations around the world makes research funding go further, and allows researchers to be a part of cutting-edge dementia research.
“Alzheimer’s Society is committed to spend at least £150 million on dementia research in the next decade. As the only UK charity funding research into dementia care, cure and prevention, we are delighted to include the Joint Programme – Neurodegenerative Disease as part of our research portfolio.”
Dr Janice Bailie, Assistant Director, HSC R&D Division, PHA, Northern Ireland, commented: “We are delighted to be able to collaborate with our UK partners to fund these projects which will hopefully lead to real improvements in the care of people with dementia and their carers in the future. We are particularly pleased that one of the projects will be led by Professor Kevin Brazil from Queens University, Belfast, building on previous research in Northern Ireland in nursing homes to establish an international community of practice to help families living with advanced dementia make informed decisions about end of life care.”
Professor Kevin Brazil from Queen’s University Belfast will be leading research across five countries to develop and test a new way to support people with advanced dementia. Professor Brazil commented: “Previous research on the Family Carer Decision Support (FCDS) Intervention has shown that equipping family carers with the right knowledge and skills can reduce uncertainty in their decisions as well as improving satisfaction with the quality of care. I am delighted that this new multinational programme will adapt and test the FCDS intervention so it can be widely put into practice.”
For more information see: https://www.alzheimers.org.uk/research/our-research/international-partnerships and https://www.alzheimers.org.uk/research/our-research/JPND as well as the details below.
UK funding highlights
Some highlights from this year’s funding announcement include UK research teams leading the way in identifying how to best support people living with dementia and their carers across England, Wales and Norther Ireland:
Multi-Domain Lifestyle Targets for Improving ProgNOsis in Huntington’s Disease
Professor Monica Busse at the University of Cardiff in Wales will lead a programme seeking to improve quality of life for people with Huntington’s disease. Huntington’s is a genetic disease for which there are currently no treatments. The programme will focus on aspects of life for people with Huntington’s that haven’t been studied in depth up until now. The researchers will look at how sleep, nutrition and physical activity all impact the disease, and develop new ways to support people to manage these fundamental aspects of their lives. The Welsh team will lead a consortium across Europe which includes Ireland, Spain, Poland, Germany and Switzerland.
Scaling up the Family Carer Decision Support Intervention: A transnational effectiveness-implementation evaluation
At Queen’s University Belfast, Professor Kevin Brazil will lead a programme across five countries to develop and test a new way to support people with advanced dementia. The ‘Family Carer Decision Support’ (FCDS) Intervention is designed to help families understand and make decisions about end-of-life care options for people with dementia. Previous research has shown that equipping care home staff with the right knowledge and skills can reduce uncertainty for family carers in their decisions and improve satisfaction with the quality of care. In the new programme, teams across Northern Ireland, England, Canada, Netherlands, Republic of Ireland and Czech Republic will work together to adapt and test the FCDS intervention so it can be widely put into practice.
CO-desiGning demeNtia dIagnoSis ANd post-diagnostic CarE
Professor Greta Rait at University College London (UCL) and Professor Louise Robinson at Newcastle University will work with a multinational team to understand the barriers and deliver new solutions to improve the experience of dementia diagnosis and post-diagnostic support. To ensure the relevance of these solutions, this work will be conducted and delivered in partnership with people with dementia, family carers, partners and health care professionals. Research teams are included from Australia, Canada, the Netherlands, Poland and the UK. The project builds on the Alzheimer’s Society Centre of Excellence, hosted at University of Newcastle and supported by UCL, which is developing primary care and community models of post-diagnostic support.
European e-Health care model for rare degenerative diseases
Professor Stephen P McKenna at Galen Research in Manchester will work with a multinational team to harness the power of e-health care models to improve health care strategies for rare neurodegenerative diseases such as Huntington’s disease. We know that people with conditions such as Huntington’s need care from a range of different disciplines, making accessing best practise and effective care a challenge. A vital goal is to ensure ‘the patient doesn’t travel, the knowledge does’. Researchers will develop a multidisciplinary, multilingual and multicultural e-health care approach to test across Europe in the Czech Republic, Ireland, Italy, The Netherlands, Germany and England to identify how best to reach this goal.
A HOME-based Spousal caregiver-delivered music Intervention for people living with DEmentia: A Randomised Controlled Trial
Professor Helen Odell-Miller at Anglia Ruskin University will work with a multinational team to develop and test a music programme to support people living with dementia, delivered from the comfort of their own home. As the majority of people with dementia live in the community rather than in care homes, support here is crucial. Music interventions can reduce behavioural and psychological symptoms of dementia but, but we don’t yet know the whether this type of intervention might also work when delivered by a carer at home. Researchers will assess the impact of the intervention on depression, resilience and quality of life for both the person with dementia and their carer across Australia, Norway, England, Germany and Poland.
OPTIMisation of community resources and systems of support to enhance the process of living with PARKinson’s disease: a multisectoral intervention
At the University of Southampton, Dr Maria Carmen Portillo will lead a multinational programme aiming to build and test care pathways for Parkinson’s disease that use resources and systems of support in the community. They hope to optimise the use of community resources across Europe, in particular in disadvantaged areas, and reduce inconsistency between nations to improve effectiveness, and cost-effectiveness, of care for people living with Parkinson’s Disease. They will test their intervention to help care providers and health professionals learn from best practice and apply these findings to their own work. Four countries will take part in this programme, involving researchers from England, Spain, Norway and Denmark.
Self-management and HeAlth Promotion in Early-stage dementia with e-learning for carers – A randomised controlled trial
Professor Linda Clare at University of Exeter and Professor Martin Knapp at London School of Economics and Political Science will work with a multinational team to develop and test a new way to support people living with mild dementia. The SHAPE intervention combines aspects of ‘self-management’ and ‘health promotion’ training along with eLearning to improve self-efficacy of people living with mild dementia and their carers. Self-efficacy is a new target for dementia care interventions, and aims to increase people’s belief in their own ability to succeed and complete tasks. Participants will take part in the study in Norway, England and Australia to assess this approach across borders.
Social Health And REserve in the Dementia patient journey
Dr Daniel Davis at University College London will work with a multinational team to unravel the relationship between social health, biological and psychological factors in dementia. They will use existing data from 40 studies, capturing long-term data from nearly 150,000 individuals to probe which aspects of health are most influential during a person’s life, before and after a diagnosis of dementia. Researchers will map the role of social health across the entire patient journey for the best ways to prevent dementia, and make positive change for people living with dementia. Researchers are collaborating in this study from The Netherlands, Sweden, Australia, England, Germany and Poland.
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