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