Emily Adams

In collaboration with the NIHR Palliative and End-of-life Care Policy Research Unit and NIHR ARC Palliative and End-of-Life Care National Leadership Forum, we co-hosted an online webinar discussing the topic of palliative and end-of-life care for people with neurodegenerative conditions.

Prof Jan Oyebode and Prof Karen Windle presented an introduction to DeNPRU Exeter and shared insights from a project exploring the Parkinson’s disease research landscape, with particular focus on the end-of-life care theme.

You can find a recording of the webinar, copies of slides shared and additional resources on the NIHR Forum website.

Our interim project reports are available to view and download on our website.

We are pleased to bring to you our monthly newsletter which aims to capture snapshots of work happening across DeNPRU Exeter. Our newsletters are written in a conversational manner, shining a light on any project updates and key findings, as well as upcoming opportunities for involvement.

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This blog is a powerful reflection from a FRIEND Network member on how people living with Huntington’s disease can turn lived experience into action when working with researchers and policymakers.

People with Huntington’s disease (HD) can often feel a sense of hopelessness as they are repeatedly reminded that the condition which they live with is incurable and untreatable. Getting a positive result for the gene can seem like the end of the world for some. However, with time and the right support, people living with HD discover that they are not totally powerless over the disease. Many choose to enrol in research studies and clinical trials, others work hard to fundraise for charity or their communities, some will bravely talk to the media and use their experience to ensure the public know about HD. I decided to use my academic background alongside my lived experience of being HD gene positive to ensure that the research that is conducted into HD is relevant, feasible, ethical, and impactful.

I first heard of the Dementia and Neurodegeneration Policy Research Unit (DeNPRU Exeter) through my work with HD Voice – a volunteer lived experience panel for the Huntington’s Disease Association. It is through volunteering and immersing myself into the HD community that I built up the confidence to talk to researchers about their work. Being part of DeNPRU Exeter means that I can contribute to shaping the policy that affects people living with dementia and neurodegenerative conditions through research. All (good) policy decisions should be based on robust, up-to-date evidence, and policymakers should carefully consider the impact of these decisions on the intended population. This cannot be achieved without placing lived experience at the heart of policymaking, including in the research that underpins it.

People with lived experience can influence policy research in many practical ways, for example:

• Actively contributing to consultation and co-production within the research team
• Co-authoring practical guides for researchers and others on involving people with lived experience in research, such as “What Works When Working Together”
• Contextualising research findings for real life applications
• Improving accessibility and dissemination of outputs

We can also use our unique insight to advise researchers on ethical issues surrounding their research. For example, researchers focusing on prevention of dementia and neurodegeneration should be aware that the term ‘prevention’ doesn’t make a lot of sense in conditions that have a high degree of inheritability (like HD). In the past, ‘prevention’ of HD has been associated with the eugenics movement. Researchers and policymakers should be mindful of such historic contexts (Miller & Levine, 2013) pertinent to their research topic before they attempt to incorporate it into policy or research evidence.

The only qualifier for contributing to policy research in this way is that you have gained insight and knowledge from experiencing dementia or neurodegenerative conditions, or through caring for someone experiencing it, and you wish to use that knowledge to make lives better. It doesn’t matter how much you are able to contribute – just do what you can with what you have.

I hope to continue contributing and to do even more for DeNPRU Exeter in its next year of funding (opportunities and life circumstances permitting). My advice to anyone thinking about using their lived experience to help shape research, is to take the plunge and do it. Your unique insight can make the world of difference to how research is conducted and how impactful it will eventually be for those who are meant to benefit from it.

By anonymous FRIEND Network member.

A huge thank you to the author of this post for sharing their personal experience of involvement.

Miller, P., Levine, R. (2013) Avoiding genetic genocide: understanding good intentions and eugenics in the complex dialogue between the medical and disability communities. Genetic Medicine, 15, 95–102. https://doi.org/10.1038/gim.2012.102

For the second edition of our blog-series, we are discussing all things stakeholder engagement.

By bringing together the perspectives of researchers, policymakers, practitioners and people with lived experience, we can ensure that research projects are not only informed by evidence but also underpinned by real-world perspectives.

At DeNPRU Exeter, our Knowledge Exchange Community is fundamental to our work. Integrating a diverse set of experiences and expertise, enables us to present the strongest evidence to improve the lives of people living with neurodegenerative conditions and all those who support them.

The diagram below shows the three distinct knowledge user networks that form the Knowledge Exchange Community.

We actively engage with a wide range of stakeholders from the Knowledge Exchange Community across all our projects. To date, this has included:

• Project shaping and initiation conversations
• Project-specific consultation workshops
• Interpretation of project findings
• Dissemination webinars and roundtables
• Opportunities for co-produced outputs

These activities not only strengthen the relevance and impact of our work but create opportunities for partnership, co-production and shared learning.

We are always keen to build on this by working with partners to co-produce engaging outputs – here are a few highlights:

• A news media post with Huntington’s Disease Association
• Supporting the development of Alzheimer’s Society’s Local Dementia Strategy Toolkit
• Contributing to the Motor Neurone Disease Association’s resource for people living alone.

If you are interested in joining any of the above-mentioned networks or to discuss opportunities for collaboration, please do reach out to us at denpru@exeter.ac.uk.

You can also stay connected with DeNPRU Exeter by subscribing to our monthly newsletter!

By Emily Adams, Stakeholder Engagement and Impact Manager.

Welcome to the first of our new blog-series! Let’s kick off in style with an introduction to Patient and Public Involvement and Engagement (PPIE) in policy research.

PPIE has become a vital part of the research landscape. No longer is research something done to people; it is increasingly done with and for the communities it aims to serve. PPIE involvement can include:

• Helping to identify research and/or policy priorities
• Contributing to the methodology and design of research
• Advising on how to share findings in informative, accessible ways
• Sharing views and experiences in consultations or focus groups

An essential part of DeNPRU Exeter is our PPIE group, known as the FRIEND (For Research Involvement Experts in NeuroDegeneration) Network. Led by Rachael Litherland, co-director of Innovations in Dementia, the Network exists to involve people with lived experience of dementia, Parkinson’s disease, Huntington’s disease and motor neurone disease (MND) in all aspects of our policy research. The wider Network is made up of over 40 people with lived experience, and there is a smaller core group of around 20 people known as the FRIEND group.

The golden thread throughout our work is meaningful engagement and involvement. Everyone across the Network can get involved in activities that are of interest to them. The voice of those with lived experience help us see the bigger picture and guide how our projects grow and adapt through feedback and open conversation.

Allison, a member of the FRIEND group, shares her views on the importance of involving those with lived experience in policy research:

“I strongly believe that any researchers should involve people with lived experience. This should include people who are living with the condition and people who care for or who have cared for someone with the condition. This way you get a balanced viewpoint, resulting in a better outcome. My advice to any researcher is to not be afraid to involve people with lived experience. Remember nothing should be done for us without us because you don’t know what we need. I’m involved in the FRIEND group which includes people affected by dementia, MND, Huntington disease & Parkinson’s disease, resulting in a very strong, passionate group and it is truly amazing.”

Last year, the FRIEND group co-created a practical guide to support the involvement of people with different neurodegenerative conditions in policy research. You can explore the guide and learn more about our FRIEND group on our website.

Don’t forget, you can also sign up for our monthly newsletter to stay up-to-date with what’s going on at DeNPRU Exeter.

By Allison, expert by experience and FRIEND group member, and Emily Adams, Stakeholder Engagement and Impact Manager.

With special thanks to Allison for her contribution.

Project title: Estimating the prevalence rate of people with a formal dementia diagnosis by broad ethnic group.

We have successfully secured funding for a project to produce prevalence estimates of people with a formal dementia diagnosis, broken down by broad ethnic group. This project is funded through the EquaDem Network, which aims to develop solutions to barriers in dementia diagnosis and care, and to influence clinical and social care practice.

The project will be led by Dr Laura Gamble, from Newcastle University.

Background

Research shows that people from minority ethnic groups have been found to be at greater risk of dementia. Individuals from these groups face a number of barriers which make accessing dementia diagnoses and healthcare services more difficult. After diagnosis, different people need different types of support. However, those who plan and provide dementia care can only make good decisions if they have the right information. Right now, we don’t know exactly how many people from minority ethnic backgrounds have dementia, either nationally or in different local areas. In fact, for 17% of dementia diagnoses (85,412 people), ethnicity was not recorded. This means we cannot fully understand or plan the right support for different communities.

What are we planning to do?

Our project aims to change this. We will bring together information from different data sources to estimate the number of dementia diagnoses by ethnicity across local NHS areas (sub-ICBs). Where possible, we will also use local NHS data to test our method, alongside other datasets. We will work closely with people affected by dementia and healthcare professionals to understand their views on our approach, its practical importance, and ethnicity data collection. We hope to share not just numbers, but also insights into how data recording can be improved.

Why are we doing it?

This research will help ensure dementia services are planned fairly, so resources are used wisely, and everyone gets the support they need. The lack of ethnicity data is leading to inequalities in NHS care; this is our chance to make a real difference.

We are keen to collaborate with local Integrated Care Boards to validate our findings. If this would be of interest to you or to find out more information, please contact denpru@exeter.ac.uk

Reducing inequalities for people living alone with dementia.

This DeNPRU Exeter project has produced comprehensive policy recommendations that could help reduce the significant inequalities experienced by individuals living alone with dementia. These focus on four themes:

• Acknowledging the scale of the issue
• Adapting pathways and services to provide more responsive personalised care
• Strengthening community support
• Making research inclusive and practically relevant

Key impacts to date:

• Inclusion in The Dementia 100 Pathway Assessment Tool. ‘Criteria 1.11. Commissioned services take into account the individual needs of those living alone with dementia’
• Evidence embedded in Alzheimer’s Society Local Dementia Strategy Toolkit. ‘Preventing Well. Recommendation 3.3: Systems should establish a preventative approach to reducing self-neglect among people living with dementia’
• Submitted as evidence to the 10-Year Health Plan to inform the three key shifts in healthcare
• Cited in Care England’s report ‘The current state of dementia diagnosis and care in England’ highlighting the significant gaps and inequalities in the dementia care pathway

This research demonstrates how people living alone with dementia have more unmet needs than those living with others and face significant inequalities across the diagnosis and care pathway. It suggests the need to find new and better ways of meeting the needs of people living alone with dementia.

Proactive support and crisis prevention will ease pressures on NHS and social care services and help people living alone with dementia to maintain their independence and live well.

Read more about the project here.

In this webinar, we shared findings from our ongoing policy research project into reducing inequalities for minority ethnic communities.

In this webinar, the fourth in our series, we shared findings from our workstream on raising awareness of neurodegenerative conditions and reducing stigma. Our three speakers are:

• Professor Jan Oyebode, Deputy Director of DeNPRU Exeter
• Dr Maria Caulfield, DeNPRU Exeter Research Fellow
• Shafaq Ali, Expert by Experience who lives with Parkinson’s disease

You can find the first interim report for the project here and follow this link to the webinar recording on YouTube channel.

In this webinar, we shared findings from our recently-completed project on living alone with dementia or another neurodegenerative condition.

In this, the third webinar in our series, we shared learning from our recently-completed policy research project on supporting people who live alone with dementia, Parkinson’s disease, motor neurone disease and Huntington’s disease. Some people live alone with family or a strong network of friends nearby. Other people have no support at all. Systems and services are often designed on the basis that everyone has a carer.

We wanted to understand:

• how many people are likely living alone with a neurodegenerative condition?
• what do existing research articles and recommendations tell us about living alone?
• what can we learn from personal and professional experiences of living alone with a neurodegenerative condition, or supporting those who do?

You can watch the webinar recording here on our YouTube channel.

In this webinar we were joined by Emma, David, Jackie and Rick to discuss access to mental health services in relation to a neurodegenerative condition.

In the second webinar of our series, we facilitated a live conversation to discuss access to mental health services for people living with, or supporting someone living with, a neurodegenerative condition. Our speakers comprise:

• Emma Edwards, Specialist Parkinson’s Nurse, Trustee of Spotlight YOPD and Clinical Research Nurse Fellow
• David Stephenson, Head of Policy and Public Affairs, Huntington’s Disease Association
• Two experts by experience from our FRIEND group (For Research Involvement Experts in Neurodegeneration), Jackie, who has lived experience of Huntington’s disease, and Rick, who lives with motor neurone disease.

Artwork: ‘Emotional Challenges in Neurodegeneration’ by Rick Nelms

To watch the webinar recording, follow this link to the DeNPRU Exeter YouTube channel.

For the first webinar of our series, we launched our new practical guide for involving people with different neurodegenerative conditions in policy research.

In the first webinar of the DeNPRU Exeter series, we launched our new digital guide to encourage researchers to involve people with different neurodegenerative conditions in the research process. Members of our FRIEND group (an involvement and co-production group) shared their insights into the experience of working together.

The new digital guide and report are accessible on our website. You can also find the webinar recording here on our YouTube channel.