Creating Alternative Pathways of Support for Older Informal Caregivers

Creating Alternative Pathways of Support for Older Informal Caregivers is a newly funded project by the Wellcome Trust Institutional Translational Partnership Award (iTPA).

The project aims to co-develop alternative support pathways to provide older informal caregivers with long-term conditions who look after people with multimorbidity with new opportunities for rapid support before a crisis associated with caregiving occurs.

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older couple smiling

 

People are living longer. While a good thing, it means more of us are living with two or more long-term conditions (multimorbidity). To manage their everyday needs, people with multimorbidity commonly depend on the informal (unpaid) care of family and friends to maintain their independence and quality of life. Informal caregiving can affect caregivers, especially older caregivers who often have long-term conditions themselves. Considering our increasing dependency on informal care as we encounter an ageing population, providing accessible and tailored support services to older informal caregivers is critical. 

Adult day-care centres provide essential respite for informal caregivers. Previous research has shown better psychosocial outcomes in informal caregivers benefiting from adult day-care services. In collaborating with local adult day-care centres and informal caregivers, we aim to identify older informal caregiver needs and priorities and co-develop alternative support pathway to pilot.

 

Support Pathway Project update - December 2024

The UK population is rapidly ageing, with one in seven people projected to be over 75 years old by 2040. While it is positive that we are living longer than ever, this does mean that more people are ageing with multiple long-term conditions (MLTC or multimorbidity). MLTC can have a negative impact on all aspects of a person’s life, including their quality of life and mental health and their ability to function independently. People with MLTC often depend on additional informal or unpaid support from family and friends to maintain their independence and quality of life. 

Providing such care can negatively affect carers’ health and wellbeing, especially the growing number of older carers who live with long-term conditions themselves. Considering the increasing dependency on informal care to support an ageing population, providing accessible and tailored support services to older informal carers is critical.

Adult day-care centres offer vital support for people living with MLTC and disabilities while also providing essential respite for their carers. These centres are well placed to offer carers the necessary resources, skills, and support to enhance their wellbeing — addressing the urgent and often overlooked challenges of caregiving. 

In partnering with a day-care centre and a community organisation supporting South Asian communities living with MLTC, we hosted four co-design workshops to identify unmet support needs and priorities of older informal carers. We explored potential support pathways and produced an intervention with supporting resources. Through this collaborative process, we created an alternative support pathway prototype, which includes the following components:

  • ResourcesPersonalised materials and resources, which make part of a ‘Carer Box’, focused on signposting carers to local support services and providing practical tools to improve self-care and overall health and wellbeing.
  • ServicesA combination of group-based educational and psychosocial services concepts, with accompanying manuals and informational materials.
Document
ACRC Pathway update (3.4 MB / PDF)

 

Meet the Team

Dr. Stella Arakelyan

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Stella Arakelyan

Stella’s expertise is in public health research and practice. Her research focuses on examining health system responses to prevention and control of chronic conditions and co-development and evaluation of health service improvement interventions. She has a research track record spanning a period of 13 years in which she published over 25 scientific articles, reports, and briefings. Dr Arakelyan currently uses participatory and system thinking methods in partnership with patients, caregivers, health and social care professionals, and wider stakeholders to explore systems problems and co-design hospital- and community-based complex interventions to optimise health and care services for people with multimorbidity and their informal caregivers.

Dr. Jacob Sheahan

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Jacob Sheahan

With a background in industrial and interaction design and conducting participatory design research, Jacob’s work focuses on socially complex contexts from ageing to health to safety. Having studied at RMIT University, Melbourne, Jacob is well-versed in interdisciplinary and collaborative projects that partner with local communities and organisations to develop socio-technical designs and innovations.

Professor Bruce Guthrie

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Bruce Guthrie

Bruce Guthrie is Professor of General Practice at the Usher Institute, in the Edinburgh Medical School.

Bruce is a mixed methods health services researcher with an interest in the quality and safety of health and social care, particularly in relation to multimorbidity and polypharmacy. As well as research, he works clinically as a GP and works closely with the NHS and government to improve healthcare quality and safety.

He is the Director of the ACRC, and one of the leads for Data-Driven Prediction and Insight.

Find out more about Bruce Guthrie on their profile page

Professor John Vines

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John Vines photo

John Vines is Chair of Design Informatics in the School of Informatics at the University of Edinburgh, and is Co-Director of the Institute for Design Informatics. His research is in the field of human-computer interaction, where he studies the lived experience of digital and data-driven technologies and uses participatory methodologies to design new technologies that have social impact and value.

Find out more about John Vines on their profile page

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