News

Disparities in access to diagnostic and care pathways continue to be exacerbated by health inequities. Research shows that demographic factors – such as age, gender, ethnicity, socioeconomic status and where you live – can shape how people access, use and seek health and social care support. It is crucial that we understand these differences and work to address them to ensure that everyone can receive the care they need, when they need it.

Health inequity is a core research theme for us at DeNPRU Exeter. We currently have three projects that directly aim to produce findings and recommendations to tackle these issues, and many of our other projects also explore related inequities. Read more below about our specific projects:

Health care service utilisation after a diagnosis of dementia or another neurodegenerative condition – assessing the impact of inequalities

Led by Professor Matthew Prina, Newcastle University

What are we trying to find out?

• We want to understand what difference does your ethnicity, age, gender, socioeconomic status and where you live make to your use of health care services such as GP and primary care.
• We want to estimate how much it costs to access such services.
• We want to see if there are any difference in accessing these services over time.

What are we going to do?

• Looking at the 12-months post-diagnosis, we will use primary care data (GP and hospital records) to look at how people use these services. This will include, how often people visit the GP, how many times they are admitted to hospital and how long they stay in hospital for.

To learn more about this project, take a look at this infographic or visit the project page.

Reducing inequalities across the care pathway for minority ethnic communities

Led by Dr Sahdia Parveen, Bradford University

What are we trying to find out?

• We want to deepen our understanding of how best to raise awareness and reduce the stigma of neurodegenerative conditions among South Asian and Black British communities.
• We want to understand the diagnostic process and experience for people from these communities.

What are we going to do?

• We will review existing research evidence to identify the most effective ways to raise awareness and reduce stigma in these communities.
• We will meet with people with lived experience and clinicians to hear their experience of the diagnostic process and generate recommendations on good practice.

You can find a selection of outputs on the project page including a policy report and webinar.

Informing policy to better meet the needs of people living alone with dementia or another neurodegenerative condition

Led by Professor Linda Clare

What are we trying to find out?

• We want to understand how many people are living alone with dementia, Parkinson’s, Huntington’s or motor neurone disease and what it is like to live alone with one of these conditions.
• We want to draw attention to the types of services people living alone use and how health and social care services can best support them.

What are we going to do?

• Using national data, we will estimate the number of people living alone with these conditions.
• We will review the evidence and gather insights from people with lived experience and professionals to understand their experiences and develop recommendations for policy and practice that best meet the needs of people living alone with a neurodegenerative condition.

For this project, we have published a report for living alone with dementia and living alone with a progressive neurological condition. You can also find more resources on the project page.

If you would like to receive updates from DeNPRU Exeter, sign up to receive our monthly newsletter straight to your mailbox.

By Emily Adams, Stakeholder Engagement and Impact Manager

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.

Click the links below to read the corresponding newsletter

2026

January 2026
February 2026

2025

December 2025

November 2025

October 2025

September 2025

August 2025

July 2025

June 2025

May 2025

April 2025

March 2025

February 2025

January 2025

Subscribe to receive our newsletter.

‘Living alone with dementia is the next major challenge in aging.’ Mike Splaine, Splaine Consulting

I think many people assume it’s impossible to live alone if you have dementia. This is just one of many public misconceptions about living with dementia. Having supported from a distance two family members who each lived alone with dementia, I was aware that it does happen – and that services and support are generally designed around the expectation that there is a family carer involved and available. That’s why, when I led the IDEAL (Improving the experience of Dementia and Enhancing Active Life) study, I wanted to know how many of the people we recruited through NHS memory services were living alone and to learn more about their experiences.

Nearly 1 in 5 IDEAL participants were living alone with mild or moderate dementia, and of those living alone, nearly 1 in 5 said they had little or no informal support. Compared to people living with others, on average they had lower well-being and poorer quality of life, a difference that remained evident over two years of follow up (read our 2025 paper). We thought 1 in 5 might be underestimating the proportion who live alone because family carers are often instrumental in supporting participation in research studies like IDEAL.

I was still keen to find out more, so when we set up DeNPRU Exeter I proposed living alone with dementia as a policy research topic. Using data from primary care, we found that 40%, or 2 in 5, of people with dementia living in the community in England in 2023 were living alone (read our 2025 paper). Looking at research evidence (see our newly published 2025 review), we came to understand this as a source of inequality, as people living alone – often older women – have more unmet needs, appear to experience disadvantage across the care pathway from diagnosis to end-of-life, and have a distinct experience of life with the condition. Despite this, there is scarcely any research evidence about how best to support those living alone.

Through working on this topic our team was able to connect with colleagues with a similar interest:

• Dementia UK identified living alone with dementia as one of its research priorities and we worked in parallel with Emma Wolverson and Karen Harrison-Dening and their team.
• Paola Barbarino, CEO of Alzheimer’s Disease International (ADI), told me that addressing the needs of people living alone with dementia is a global concern and not just an issue for high-income countries, and living alone will be a key theme in the next ADI conference in April 2026.
• In November, I joined my US colleagues, including Heather Menne and Allison Gibson, in delivering a symposium on this topic at the Gerontological Society of America conference in Boston and we held stimulating discussions with others working in this area including Elena Portacolone and Fang Yu.
• Next year, we plan to present at the International Association of Gerontology and Geriatrics conference in Amsterdam in July.

All this tells me there is a groundswell of interest and real momentum for change.  Here in England, our policy report had an immediate impact in the new NHS Dementia 100 Pathway Assessment Tool, commissioners are now advised to consider the needs of people living alone with dementia when planning and commissioning services. This is a good start. Now we must build on it.

When we embarked on this policy research project, I was shocked to discover that 30 years ago, in 1994, the (then) Alzheimer’s Disease Society had issued a policy report on ‘Dementia and Living Alone’ that emphasised the need for tailored services and better support, yet in 2024 it seemed awareness of the issue remained limited. I’m encouraged to see this starting to change. We cannot leave it another 30 years – change needs to happen now.

Sign up to our monthly newsletter to hear the latest updates, upcoming events and opportunities from DeNPRU Exeter.

By Prof Linda Clare, Director of DeNPRU Exeter

Living alone with dementia presents unique challenges. Recognising this as a key priority, Dementia UK hosted a panel session webinar with leading experts.

The webinar explores the following questions:

• How people who live alone with dementia access support, and what needs to be in place to reduce inequities of provision?
• What are the psychosocial needs of people living alone with dementia, as reported in published research?
• How can Admiral Nurses enable people who live alone to remain independent for as long as possible?

In this webinar, hear from Professor Linda Clare (Director of DeNPRU Exeter, University of Exeter), Dr Phil Joddrell (Research Fellow, Dementia UK), and Fay Valentine (Admiral Nurse, Dementia UK).

Watch the webinar here!

Living alone with progressive neurological conditions brings unique challenges, but how common is it? Our new paper explores this question, and this blog highlights the key findings and what this means for policy and practice.

What we did?

Using data that is routinely collected via NHS electronic health records, we assessed the prevalence of people living alone in England in 2023 with a diagnosis of dementia, Parkinson’s, motor neurone disease or Huntington’s disease. We also looked at trends in prevalence over 15 years from 2009-2023.

What does the data tell us?

Below, we highlight the main findings from the analysis for each condition:

Dementia

• In 2023, 48,112 people with dementia were living alone. This is 40% of all 205,507 people who had dementia
• Dementia was more prevalent in women than men, and women were more likely to live alone
• Those aged over 80 were most likely to live alone
• Individuals of white ethnicity were more likely to live alone compared to those of any Asian ethnicity
• People of black ethnicity were more likely to live alone than both white and Asian groups
• People with dementia living in the North East, North West, West Midlands or Greater London were more likely to live alone

Parkinson’s

• In 2023, 11,048 people with Parkinson’s were living alone. This is 33% of all 40,244 people who had Parkinson’s
• Parkinson’s was more prevalent in men than women, but women were more likely to live alone
• As with dementia, those aged over 80 were more likely to live alone and people of black ethnicity were more likely to live alone than both white and Asian groups

Motor neurone disease

• In 2023, 975 people with motor neurone disease were living alone. This represents 33% of the 3,515 people who had motor neurone disease
• Motor neurone disease was more prevalent in men, with a greater proportion of men living alone than women
• Those who were aged under 45 were the least likely to live alone

Huntington’s

• In 2023, 442 people with Huntington’s were living alone. This is 38% of all 1,672 people who had Huntington’s
• The prevalence of Huntington’s in men and women was similar and there were no differences in living alone across age or sex

Over the 15-year period from 2009 to 2023, the proportion of people living alone with dementia increased from around 30% to 40%. For Huntington’s, it increased slightly from 35% to 38%. In contrast, the proportion of people living alone with motor neurone disease fell from 36% to 33%, while the percentage for Parkinson’s remained stable at 33%.

What does this mean?

Our analysis shows that many people with progressive neurological conditions live alone, and that this number is rising, particularly among those with dementia and Huntington’s. Living alone with a progressive neurological condition has been linked to poorer physical and mental health, reduced quality of life and greater difficulty accessing care and support. All of which can increase the risk of hospitalisation or crisis.

Our research also highlights why it is vital for GPs and other service providers to record and regularly update information about people’s living arrangements. Collecting data to understand who lives alone helps services to identity individuals who may need extra support.

With an ageing population, greater focus is needed on how best to support people living alone with progressive neurological conditions. Targeted approaches are especially needed for high-risk groups, such as those from more deprived areas or of black ethnicity, who may face unique challenges in accessing care and support.

Read the full paper in BMC Medicine. 

Register for our monthly newsletter to receive regular updates and links to new papers, outputs and resources from DeNPRU Exeter.

By Emily Adams, Stakeholder Engagement and Impact Manager and Dr Anthony Martyr, Senior Research Fellow

We’re pleased to share a new video introducing DeNPRU Exeter.

In the video we hear from Professor Linda Clare, Director of DeNPRU Exeter, Professor Karen Windle, Dr Catherine Quinn and Dr Sahdia Parveen, members of the Leadership team, Dr Magdalena Walbaum, of the Research team and Julia Burton, co-applicant and expert by experience lead.

The short video highlights who we are, what we do and the importance of involvement at DeNPRU Exeter.

You can watch the video via our YouTube channel and find out more about DeNPRU Exeter on our website.

The 35^th Alzheimer Europe Conference ‘Connecting science and communities: The future of dementia care’ was held in Bologna from 6-8^th October 2025.

With over 1500 delegates from 48 countries, the conference brought together a wealth of knowledge, expertise and shared enthusiasm.

We were delighted that Jan Oyebode, Professor of Dementia Care at University of Bradford and Deputy Director of DeNPRU Exeter, was at this year’s conference to present our DeNPRU Exeter project on ‘Improving awareness and reducing stigma of dementia in minority ethnic communities.’

Jan shared findings from a scoping review and consultations on campaigns to improve community awareness. Key takeaways included:

• A review of 21 relevant sources revealed a range of campaign formats, including videos, podcasts, online guides, posters, webinars, and community-led initiatives.
• Campaigns that resonated most with communities featured personal stories, information delivered by professionals, the use of community languages, and discussions on culturally relevant topics.
• Research evidence suggests awareness-raising campaigns have potential to improve knowledge and encourage help-seeking.
• Consultations highlighted that: campaigns should be inclusive of all generations, that building trusting and sustainable relationships are key to changing attitudes, that a culturally aware workforce is crucial, and that gaps in ethnicity data and a lack of long-term funding undermine impactful campaigns.

This work is part of a wider project, ‘Reducing inequalities across the care pathway for minority ethnic communities.’ You can read more about this project and view and download the project report on our website.

Plenary discussions at the conference covered powerful topics such as the importance of giving voice to people with dementia, gender and sexuality in dementia care, and preparing for new Alzheimer’s disease treatments.

The oral and poster presentations offered thoughtful insights underpinned by a shared commitment to shaping a future when dementia care is more inclusive and equitable.

The conference concluded with a brilliant keynote by Professor Marco Trabucchi, who explored the future of dementia diagnosis and treatment. His message was characterised by optimism and a call to translate research meaningfully into care. He emphasised that communities must be strengthened by knowledge and support, and that policies should be inclusive, equitable and fair.

You can find a detailed programme from the conference on Alzheimer’s Europe website.

Register to receive our monthly newsletter that includes details on upcoming events and opportunities of interest.

By Prof Jan Oyebode, Deputy Director of DeNPRU Exeter.

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.

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.

We are delighted to have begun work as one of two new NIHR Policy Research Units in Dementia and Neurodegeneration as part of the NIHR’s Policy Research Programme (PRP). The number of people living with a neurodegenerative condition in England is growing: we need the right policies in place to ensure that systems and environments can best support people living with these conditions.

Professor of Clinical Psychology of Ageing and Dementia at the University of Exeter, Linda Clare, Director of DeNPRU Exeter said: “We know that the number of people living with dementia and other neurodegenerative conditions will increase over the coming years as our population ages. It is also likely that the length of time people live with these conditions will increase as treatments improve and they deserve the best quality of life possible. It is therefore essential that our policy-making in these areas is underpinned by robust data and evidence to ensure that the health and care system is best equipped to meet the challenges ahead and continue to provide the support needed in an efficient and compassionate way. The Policy Research Unit brings together a team of world-leading researchers in dementia and neurodegeneration and will ensure policy is based on the latest evidence.”

Work is already under way on our first three policy research projects:

• Reducing inequalities across the care pathway for minority ethnic communities
• Informing policy to better meet the needs of people living alone with dementia or another neurodegenerative condition
• Modelling the impact of preventive interventions on adult social care

As with any research endeavour, DeNPRU Exeter is a collaborative effort. The enthusiasm for this work from experts by experience, organisational stakeholders and health and social care professionals alike is inspiring and we look forward to seeing what we can do together.