Exploring breathlessness and the loneliness epidemic

Increasingly older people are feeling lonely – Age UK estimate that by 2026, 2 million people in England aged over 50 will experience loneliness, nearly double the number in 2017. This is a major concern for older people, as well as policymakers and healthcare professionals, as evidence shows loneliness contributes to poorer physical and mental health, lost productivity and earlier death. 

Among the various factors which contribute to loneliness, one that is poorly understood is the relationship between chronic breathlessness and loneliness. People with breathlessness are more likely to experience depression, loss of mobility and increasing isolation in their communities – and about 1 in 5 report loneliness. Breathlessness disrupts the daily lives of over a third of older people. It accompanies most chronic conditions, including lung disease, heart disease, cancer and neurological conditions, and it causes high levels of suffering. 

Aims of our research

Currently there is little research to understand the experiences of older people living with loneliness or the scale of the problem. This project led by Dr Lisa Jane Brighton, a member of the ARC’s palliative and end of life care research theme, aims to address this gap in knowledge. 

The researchers will develop a conceptual model of the relationship between breathlessness and loneliness in older adults, to inform interventions to reduce loneliness. 

The objectives are to: 

1. Explore and make visible the lived experiences of loneliness in older people with breathlessness
2. Determine the relationship between breathlessness and loneliness over time    

How the research will be carried out

We will carry out this research across two studies, using qualitative and quantitative methods:

• Photovoice study: we will ask around 25 people with breathlessness to take photographs over two weeks, representing their experiences of social connection and loneliness. Each participant will select five photos to discuss with the researcher in an interview. During the interviews, we will explore how breathlessness and loneliness affect one another, what influences this relationship and what support may be most helpful.
• Existing data analysis: we will examine information collected from 2,000+ people as part of the English Longitudinal Study of Ageing. This will help us understand how many people with breathlessness feel lonely, and how much breathlessness and loneliness affect each other over time.   

At the end of the project, we will explore the findings from both studies with people with relevant personal and professional experience at an interactive event, which will include exhibition of images from the photovoice study. Together, we will identify opportunities for future action.   

How are patients and the public involved in the study?

We have a dedicated service user advisory group comprising individuals personally affected by breathlessness, and with past or current experience of loneliness. We will meet and collaborate with this group throughout to ensure acceptable research methods, successful recruitment, rigorous analysis and interpretation of findings and clear communication of results to multiple stakeholders.

Our collaborators 

We are working in partnership with the charity Asthma + Lung UK. We will work with diverse service user and professional stakeholders throughout, including people with breathlessness, family carers, healthcare professionals, and academics in respiratory and psychological health. 

Potential benefits of this research

At the end of this research, we aim to: 

• Understand the relationship between breathlessness and loneliness, and the potential role of depression, with implications for psychological support
• Identify opportunities to maximise existing social health approaches, plus new intervention ideas, for people living with breathlessness
• Raise awareness of the challenges of living with breathlessness, to drive innovation and change in practice.

This project is funded by the Economic & Social Research Council (ESRC) and will complete in November 2026.