Emma Walter

By Professor Linda Clare

When they told me ‘It’s only ten minutes’ I felt relieved. Fairly soon I had a set of slides about the IDEAL research programme  that looked varied and interesting. They showed how our thinking about well-being and quality of life evolved over the course of the research and the co-produced resources that resulted. The slide set ended with the ten-point call to action that our ALWAYs lived experience group developed in response to the findings, included in our book ‘Living with Dementia Reconsidered’.

As the Alzheimer’s Disease International (ADI) conference approached and the time for my ten-minute plenary talk grew nearer, suddenly it didn’t seem quite so easy. I started to ask myself about the take-home message. How do you turn an eleven-year research programme on improving the experience of living with dementia that resulted in over 90 research papers, a range of online and print resources, a play and documentary film, an opera, an art exhibition and a book into a ten-minute talk and make one key point that could potentially lead to concrete changes and improvements?

Reflecting on our current DeNPRU Exeter work reviewing research evidence to support development of dementia policy as part of the implementation of the 10 Year Health Plan for England, and inspired by what I was hearing about advocacy, policy and research at the conference itself,  I returned to my slides. The evening before the talk, I thought about what we had learned.

We wanted to know what would help maintain well-being and quality of life for people with dementia over time. When we started, there was no clear evidence. We found that on average, quality of life doesn’t change much over up to seven years after diagnosis, but if you look more closely at what is happening for individuals you can pick up warning signs of a drop in quality of life – these include feeling depressed, feeling bad about themselves, feeling like they are ‘not the same person’ as before, and feeling lonely. To help maintain quality of life and avoid decline, people need support for their psychological well-being and mood, support for social connections, and support for their ability to function in everyday life.

Thinking about this, it struck me that we already know a lot about how to address these challenges. This tells us what health and care services can do right now to help maintain quality of life. Rehabilitation both as a service model and as an intervention is effective in supporting functional ability, enabling people to continue engaging in activities and participating in their own contexts and communities. Psychological therapies can help with depression and low self-esteem. Providing social activities and facilitating social connections reduces isolation and loneliness and creates enjoyment, friendship and a sense of normality. Of course, there is more work to do if we want to optimise the benefits of these three approaches and ensure equal access, but taken together, they provide a core service offer that should be available to everyone living with dementia. I had my key take-home message – this is the change we need to see.

My talk followed Dr Andrew Budson from the VA Boston Health Care System presenting on making amyloid-targeting therapies available to veterans. I was followed in turn by Catherine Hall, CEO of Alzheimer’s New Zealand, talking about uniting service data with advocacy to create change. Before the session, the three of us speculated on why such diverse topics had been put together. The answer came during the Q&A period. Paola Barbarino, the impactful outgoing CEO of ADI, told the audience it was to emphasise that all these potential solutions – pharmacological, rehabilitative and psychosocial, and evidence-informed advocacy – are needed and must work together in an integrated approach.

By Maria Caulfield
I joined the newly established NIHR Policy Research Unit in Dementia and Neurodegeneration (DeNPRU Exeter) in January 2024, shortly after completing my PhD at Bangor University. DeNPRU, led by the University of Exeter in partnership with the Universities of Bradford, Newcastle, Ulster, and the London School of Economics, conducts policy-relevant research to support national decision-making for the Department of Health and Social Care (DHSC) and its associated bodies.

The range of projects I have supported to date has been hugely rewarding, allowing me to learn more about non-dementia neurodegenerative conditions such as Parkinson’s disease, Huntington’s disease, and motor neurone disease. I’ve supported several projects aimed at shaping policies to better meet the needs of people living alone with dementia and reducing inequalities in care pathways for minority ethnic communities affected by neurodegenerative conditions. These projects have enhanced my expertise in different review methodologies and provided opportunities to engage with people living with neurodegenerative conditions, their families, and the professionals involved in their care. Through constructive discussions with colleagues, I continue to refine my ability to translate research findings into actionable policy recommendations. I am excited to present preliminary findings from our project exploring gaps between UK policy, guidance, and the experiences of unpaid dementia carers at the 37th Global Conference of Alzheimer’s Disease International in Lyon, France.

Over the years, the DeNPRU Exeter remit has increasingly shifted to address rapid evidence requests from DHSC, necessitating new collaborative approaches and focused strategies to synthesise research literature. Balancing the demand for timely, policy-relevant evidence with rigorous research has been a new challenge. We recently completed mapping of the applied research evidence landscape for Parkinson’s disease. This effort was aimed at aligning current research with the priorities of those living with the condition and identifying gaps that need attention for future research commissioning.

Being part of DeNPRU Exeter enabled me to apply for the NIHR Three Schools Dementia Career Development Award. My project combines realist review methods and Normalization Process Theory to understand how, for whom, and under what circumstances web-based interventions become part of unpaid dementia carers’ routines. The goal is to build my methodological expertise in realist approaches, which can offer important insights into how interventions in dementia care can be effectively implemented and sustained.

The next two and a half years promise new opportunities to collaborate closely with DHSC as they implement the NHS ten-year plan. I’m particularly excited about providing evidence to support new models of service delivery for neurology across England, focusing on equitable access and coordinated care.

This project is funded through the NIHR Policy Research Unit in Dementia and Neurodegeneration University of Exeter, reference NIHR206120. The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care. 

The DeNPRU Exeter team hosted our annual team meeting on 12^th and 13^th February. We travelled from across England and Northern Ireland (with Karen arriving by aeroplane!) to come together in London. It was great to have colleagues from the Department of Health and Social Care with us, and our wonderful FRIEND group members Shafaq and Keith.

On Thursday, we began by looking forward to the year ahead, identifying areas that we would like to stop, start and continue. It was a great opportunity to connect in person with colleagues we usually only see on screen, and to have more in-depth, organic conversations. Topics included collaboration, embedding engagement with stakeholders and patient and public involvement, and strengthening our ability to deliver future projects and work programmes.

We were then delighted to welcome Niran Nirmalananthan, National Clinical Director of Neurology, NHS England and Sam Jenkins, Policy Lead for Long Term Conditions. This thought-provoking, two-way discussion gave us the opportunity to ask questions about neurology transformation and to explore future ways of working together. It was wonderful to have Niran and Sam in the room with us, and we were incredibly grateful that they took the time to join us.

On Friday, we were delighted to welcome Jeremy Isaacs, National Clinical Director for Dementia, NHS England, along with Jack Root, Senior Policy Advisor for Dementia, for an engaging in-person session. Jeremy shared valuable insights into current national priorities for dementia and frailty including tertiary prevention, diagnosis, treatment and care. He spoke candidly about the challenges facing dementia services, but also about the opportunities to drive meaningful change through collaboration across health and care systems.

For our final session, we chatted all things impact planning. With several projects nearing completion and new programmes of work on the horizon, it is essential that we can monitor and track the impact of our work. Using a knowledge mobilisation and impact planning tool, we divided into groups to map impact pathways for a selection of our projects. These dynamic discussions will now inform the development of more formal impact plans and will be embedded in future project initiation processes.

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By Emily Adams and Emma Walter, Stakeholder Engagement and Impact Manager(s)

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.

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By Emily Adams, Stakeholder Engagement and Impact Manager

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. 

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