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King's College London

Health

Unlocking Better FUTUres for Informal CARErs and Families through Interdisciplinary Research (FUTU-ICARE)

Globally, informal carers provide crucial support to individuals with serious long-term conditions, disabilities, or chronic illnesses, yet many remain under-supported by health and social care systems. With over 63 million carers worldwide, 67% of whom are the primary caregivers for household members, their contributions are indispensable (IACO, 2018; Embracing Carers, 2020).

In many countries, up to 60% of older adults rely entirely on informal care (Rocard and Llena-Nozal, 2022), with parents and family members also playing a crucial role in supporting children and young people. In 2015, informal carers devoted over 82 billion hours to dementia care, a commitment equivalent to the work of 40 million full-time employees—a figure expected to rise to 65 million by 2030 (Alzheimer’s Disease International, 2018). In contrast, the global nursing workforce was estimated at 20.7 million in 2013 (WHO, 2016) and 29.1 million in 2020 (BMJ Glob Health, 2022). Despite this, the impact of informal carers on the management of other common diseases, such as respiratory conditions or multimorbidity, remains underexplored. For instance, over 75 million people experience severe breathlessness, and incorporating the costs of informal care would more than double the total cost of care (Dzingina M, 2017). Moreover, 1.3 billion people—16% of the global population—live with significant disabilities, often relying heavily on family support (WHO, 2023).

Despite their immense contributions, carers often face a lack of recognition and support. As chronic conditions and multimorbidity rise, addressing the needs of informal carers is increasingly pressing. Although self-care interventions for patients are becoming more common, there remains a significant gap in addressing the specific needs of informal carers themselves. This highlights the urgent need for evidence-based interventions designed to support informal carers.

Aims

This interdisciplinary project aims to unlock new strategies and scalable interventions that will both enhance the wellbeing of informal carers and drive a significant shift in how society values and supports them.

This project is part of the ‘Careforce’ cluster within King’s Better Health & Care Futures.

Methods

Our methods are grounded in both interdisciplinary and co-creative research, with carers actively shaping the direction of the project. Key methodologies include:

  • PPIE Involvement: Carers from diverse backgrounds help guide our research, ensuring that the interventions we design meet real-world needs.
  • Scoping Review and Evidence Gathering: By reviewing existing interventions globally, we identify gaps in carer support systems that can be addressed through innovative, interdisciplinary solutions.
  • Creative Workshops: These workshops bring together experts from fields like design, healthcare, and the humanities to generate new insights and potential interventions for supporting informal carers.
  • Development and Trialling: Theory based interventions will be co-designed based on preliminary results, and then trialled for scalability, effectiveness and cost-effectiveness.

Our project initially focuses on informal carers of people with severe or persistent breathlessness. Persistent breathlessness, a symptom that severely impacts quality of life for both patients and informal carers across conditions like chronic lung disease, heart failure, cancer and neurological diseases, is a frequent cause of emergency hospital attendance. This interdisciplinary research approach aims to uncover scalable interventions and strategies to empower informal carers and improve their wellbeing.

Key Achievements

FUTU-ICARE has already made strong progress in its mission to improve informal care support through interdisciplinary research:

  • Patient and Public Involvement and Engagement (PPIE): We established a diverse PPIE group, ensuring the voices of carers are integrated at every stage of our research.
  • Scoping Review: We are in the final stages of a rapid review of community-based interventions for informal carers across different countries, highlighting gaps in current support systems.
  • Workshops and Interdisciplinary Collaboration: Through creative and participatory workshops, we’ve brought together experts from diverse fields to explore and assess novel approaches to carer support.

Impact

FUTU-ICARE seeks to create a lasting global impact by:

  • Developing Interventions and Tools: Empowering informal carers and enhancing their health and wellbeing, particularly in managing complex conditions with high care needs.
  • Transforming Societal Attitudes: Shifting perspectives to ensure that informal carers receive the recognition and support they deserve.
  • Innovating Systemic Approaches: Proposing scalable health and social care solutions that leverage the strengths of informal carers and can be adapted internationally.
Project status: Ongoing

Principal Investigator

Investigator

Keywords

INFORMAL CARERSLAYCAREFORCE