Older people with chronic breathlessness are being given cameras to photograph their social lives, revealing how the struggle to breathe drives loneliness. Loneliness among over-50s in England is projected to reach 2 million by 2026, a 49% increase since 2017. Breathlessness affects more than a third of older people and accompanies most chronic conditions, yet its role in the loneliness epidemic has never been systematically studied. About one in five people with chronic breathlessness report loneliness, but no dedicated qualitative or quantitative research has explored why. If this project succeeds, it will produce the first conceptual model of how breathlessness and loneliness reinforce each other over time. The findings could reshape how health services, charities, and policymakers design interventions—for example, by targeting mobility or depression as mediators, or by training clinicians to recognise social isolation as a symptom of breathlessness rather than a separate problem. A public exhibition of participants’ photographs will make these invisible experiences visible to professionals and the public, prompting concrete pledges for action across health, social care, and community sectors.
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Challenge Loneliness is a major societal concern, contributing to poorer physical and mental health, lost productivity, and death. The number of people aged over 50 experiencing loneliness in England is predicted to reach 2 million by 2026: an increase of 49% since 2017. Breathlessness disrupts the daily lives of over a third of older people. It accompanies most chronic conditions (e.g. lung disease, heart disease, cancer, neurological conditions). Breathlessness is multidimensional and causes high levels of suffering, and typically worsens over time. People with breathlessness are more likely to experience depression, loss of mobility, and increasing isolation in their communities. About 1 in 5 people with chronic breathlessness report loneliness, and yet dedicated qualitative exploration of loneliness and rigorous quantitative modelling in this population remains absent. Despite the prevalence and impact of breathlessness being comparable to other multidimensional, distressing symptoms, its contribution to the 'loneliness epidemic' remains unexplored. By ignoring the role of breathlessness in loneliness, we likely miss valuable opportunities to successfully intervene. Vision We aim to develop the first conceptual model of the relationship between breathlessness and loneliness. Our research objectives are to: (1) explore and make visible the lived experiences of loneliness in older people with breathlessness, and (2) determine the relationship between breathlessness and loneliness over time. Approach This mixed methods project includes two main components: -Photovoice study: we will recruit older people reporting breathlessness and loneliness via health clinics, charities and social networks. We will equip them to take photographs across a 2-week period on the theme of social connection, and use a selection of their images as the basis of research interviews about their experiences of loneliness and how this relates to their breathlessness. Participants will be invited to collaborate with our team for the rest of the project, and influence how we share the findings. -Statistical modelling: Using data from an existing nationally representative dataset (English Longitudinal Study of Ageing), we will (a) describe how many older people with breathlessness experience loneliness; (b) undertake structural equation modelling using a cross lagged panel approach to determine the extent to which breathlessness and loneliness are predictive of one another over time; and (c) examine the pathways by which these relationships occur. Mediators (e.g. depression, mobility) will be selected based on previous evidence and preliminary analysis from the photovoice study. Findings will be integrated to form a theoretical model of the relationship between breathlessness and loneliness. The final model will be shared alongside an exhibition from the photovoice study in an interdisciplinary 'sandpit' event, including people with breathlessness and professionals representing diverse disciplines (e.g. psychology, sociology, health, technologies) and sectors (e.g. charities, policymakers, research, care services). Stakeholders will be asked to offer their perspectives and make pledges for action.
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