Assessing the effectiveness of new support resources for carers of people living with a dementia

An online training and support resource developed by the World Health Organisation (WHO) for family and friends supporting people living with dementia is to be assessed for use in the UK for the first time. This new research project is led by Bangor University and funded by the National Institute for Health and Care Research (NIHR).

The majority of people living with dementia are supported and receive care from family members. Most people living with a dementia are cared for at home, and the role can be very stressful, with many carers experiencing mental and physical illness as a consequence.

These ‘informal carers’ often have limited specialist knowledge of dementia and dementia care, let alone know how they can manage their own stress as carers. Covid-19 has meant that many community support services for people living with dementia have been cancelled, placing increasing pressures on carers.

‘iSupport’ is designed to help dementia carers provide good care and take care of themselves.  Carers can use iSupport at their own pace. They can access whichever parts of iSupport they feel are most relevant to them from their place of choice using a computer, tablet or smartphone.

As Professor Gill Windle, who is leading the international research team from School of Health Sciences, Bangor University explained:

“Whenever new services or medical procedures are introduced, they need to be assessed to ensure their efficiency and effectiveness.  NHS guidelines recommend that informal carers of people living with dementia such as family and friends should be offered training to help them develop care skills and manage their own physical and mental health.  We believe that iSupport will provide a good solution. Before any introduction, we need to conduct a full evaluation of the costs and benefits, considering how effective the online course is in reducing distress, and what aspect of the course carers like.”

Faaiza Bashir, Policy Research and Engagement Manager for Carers Trust Wales said:

“Unpaid carers provide vital practical and emotional support to thousands of people across Wales every single day. Without unpaid carers, the health and social care system would be unsustainable and even more people would be left unable to cope. The contribution unpaid carers make not only changes lives but saves the Welsh economy more than £8.1bn a year. Despite this, they often do not get the support they need or the recognition they deserve.”

“Carers Trust Wales are delighted to collaborate with Bangor University to ensure that carers of people with dementia across the UK can gain skills and confidence as carers through this project and access to knowledge and tools to help them maintain their own health and well-being.”

Young carers aged 11-17 are another focus for the work. Dr. Patricia Mastersen-Algar who is leading this aspect of the study notes:

“There are currently no evidence-based support interventions for young carers of people with dementia. So the team will work with a group of young carers and adapt iSupport for their use. We want to identify what outcomes are most important to them, and assess this new version of iSupport with 30 young carers.”

The research will be conducted by Bangor University, University College London and the University of Strathclyde, with The World Health Organisation, Carers Trust Wales, Alzheimer’s Scotland, Vrije Universiteit Amsterdam, and with the help of 365 dementia carers from across Wales, England and Scotland.

Four new jobs will be created, and the team is currently recruiting for a manager with responsibilities for the set-up, co-ordination and delivery of the iSupport study.

NWORTH is funded by Welsh Government through Health and Care Research Wales