Month: February 2026

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 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.

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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!