Emma Walter

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