Half of the people living alone in the UK are over the age of 65, and as family structures and living situations change the number of people living alone is increasing. We expect that the number of people living alone in the community with a progressive brain disease will also increase. These people are particularly vulnerable since they may have more problems accessing services and support. However, little is known about their needs.
In the UK, dementia is the most common progressive brain disease and affects almost 1 million people. As many as 20% of these people may live alone, and a recent report by Parkinson’s UK found that almost 20% of people with Parkinson’s disease live alone. We do not know anything about how many people with other progressive brain diseases, such as Huntington’s disease and motor neurone disease, live alone.
This study aims to estimate how many people with a progressive brain disease, including dementia, Parkinson’s disease, Huntington’s disease and motor neurone disease, live alone in England using clinical records. We will explore differences by region, sex, marital status, ethnicity, deprivation, urban/rural location as well as change over time.
Alongside this work we will review what research has been done and consult with stakeholders to helps us better understand the needs of people living alone. We hope to gain insights into the challenges, coping mechanisms, diverse needs, and support systems of people living alone. This will allow recommendations for improvement in care and support services to be made.
The number of older people living alone in the UK is steadily increasing due to societal changes and shifts in lifestyle preferences. A concomitant increase in the number of people living alone in the community with a neurodegenerative condition, such as dementia, Parkinson’s disease, Huntington’s disease and motor neurone disease, is expected. People living alone with these conditions are particularly vulnerable, often having inequitable access to services and support, and increased risk of adverse outcome.
The Alzheimer’s Society estimate that, of the 900,000 people living with dementia in the UK, 14% live alone, whereas another study recruited through memory services found that 18% lived alone. Parkinson’s UK found almost 20% of people with Parkinson’s disease lived alone. However, due to recruitment methods, estimates from research studies can vary widely and a population-based approach is needed for a more accurate estimate. Estimates for other neurodegenerative conditions are lacking.
The aim of this study is to use clinical records to estimate the prevalence of living alone with a neurodegenerative condition in England. Using CPRD and HES linked data, we will calculate the prevalence of people living alone on 1 January 2024. Analyses will be stratified by measures of inequality including region, sex, age, marital status, ethnicity, patient-level deprivation and practice-level urban/rural classification. Crude prevalence and prevalence standardised by age and sex will be reported, and logistic regression will be used to explore differences. We will investigate how prevalence of living alone has changed over the past 15 years using Joinpoint regression.
These analyses will be supported by a literature review, and stakeholder consultation and interviews with the aim of a better understanding of and response to the needs of those living alone with a neurodegenerative condition. Findings will help inform the development of policies and services tailored to meet their diverse needs.
- Annual prevalence of living alone in people with a neurodegenerative condition, including dementia, Parkinson’s disease, Huntington’s disease and motor neurone disease (overall and by condition).
- Annual prevalence of living alone in people with a neurodegenerative condition stratified by measures of inequality.
- Change over time in prevalence of living alone in people with a neurodegenerative condition.
Laura Gamble - Chief Investigator - Newcastle University
Laura Gamble - Corresponding Applicant - Newcastle University
Anthony Martyr - Collaborator - University of Exeter
Catherine Charlwood - Collaborator - University of Exeter
Claire Hulme - Collaborator - University of Exeter
Janet Oyebode - Collaborator - University Of Bradford
Linda Clare - Collaborator - University of Exeter
Maria Caulfield - Collaborator - University Of Bradford
Matthew Prina - Collaborator - Newcastle University
HES Admitted Patient Care;Patient Level Index of Multiple Deprivation;Practice Level Rural-Urban Classification