Joint Programme - Neurodegenerative Diseases

The Joint Programme - Neurodegenerative Diseases (JPND) is the largest global research initiative aimed at tackling the challenge of neurodegenerative diseases.

It aims to bring together expertise of dementia researchers around the world to speed up progress towards new treatments.

COGNISANCE

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.

DOMINO-HD

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.

FCDS Study

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.

HEALTHE-RND

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.

HOMESIDE

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.

OPTIM-PARK

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 enhance quality of life for people living with Parkinson’s Disease, their carers and family. The researchers will build and test multi-sector care pathways using resources and systems of support in the community. With a particular focus on disadvantaged areas, they hope to optimise the use of community resources across Europe, reduce inconsistency between nations and improve the effectiveness of care pathways.

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. 

SHAPE

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 and their carers.

The SHAPE programme combines training to enable people to manage and cope with life with dementia, with advice on healthy living. This intervention aims to promote confidence among people affected by dementia and empower them to continue to participate in daily life and society. Participants will take part in the study in Norway, England and Australia to assess this approach across borders.

'For many people, a diagnosis of dementia can have a significant impact on confidence. It can really dent their ability to feel able to cope with the challenges of everyday life. We’re investigating how we can best support and empower people to live independently and as well as possible in dementia.'
- Professor Linda Clare, of the University of Exeter

SHARED

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, UK, Germany and Poland.