Developing a tool to maintain compassion

Research project: Exploring how family carers experience and maintain continuing compassion in care: the relationship of compassion with psychological and behavioural outcomes, and co-design of an intervention to support it

Lead Investigator: Dr Nuriye Kupeli
Institution: University College London 
Grant type:  Junior Fellowship 
Duration: 36 months 
Amount: £224,987

Why are we funding this research? 

Comments from our Research Network

‘This proposal addresses what is almost a taboo subject: the emotional and physical stresses of the care of dementia, which often is long-term. The study is well overdue and I think will bring huge help to carers by analysing and addressing their feelings towards those they care for; and their guilt if they 'snap' or want a break.’

What do we already know? 

Supporting people living with dementia to stay at home is important and family carers often provide care with little to no support. The role of family carers is vital to improving the quality of life of people living with dementia and can affect whether an individual can stay in their own home. 

We know that if a carer experiences compassion towards themselves this can change their experience as a carer and affect the care they are able to provide. There is very little research into the health and wellbeing of carers however as dementia progresses, carers may feel isolated and this may result in care homes being seen as a possible option for their loved one.

What does this project involve? 

The research team will explore the experiences of carers including break downs in compassion, carer burden and burnout through a number of workshops, surveys and in depth interviews. 

They will then go on to design and develop a tool to measure compassion and use this to find out if there is a link between a break down in compassion and carer’s psychological wellbeing and experiences. 

Ultimately the researchers, together with family carers and health care professional, will develop an intervention to support carers to maintain compassion.

How will this project help people living with dementia? 

This project is vital to understand more about the stresses and experiences of family carers and how this might affect the care they can provide.

If we can understand more about their experiences we will be able to develop an intervention to support them to care for their loved one for longer. To ensure people living with dementia received good care, we must also care for the carers.