How our research is supporting carers

by Dr Sabine Best
Research Manager

A new report published by Carers Week - Prepared to Care? Exploring the impact of caring on people’s lives - shares the personal account of carers as they discuss the realities of caring for a family member or friend.  When someone becomes a carer it can happen suddenly or build gradually over time and many people do not recognise the changes it is having on their life.

Marie Curie has become increasingly interested in not only providing the best care for people at the end of their lives, but also looking at the environment and the needs of those people’s carers.

We have over the last couple of years joined forces with Dimbleby Cancer Care and invested more than £500,000 in research to find out more about better supporting informal carers of people in the last year of their life.

At the beginning of this year, the last of the five projects that was chosen by our joint independent advisory group formally started work, after obtaining all the necessary ethical approvals. We now have a portfolio of five funded projects that are looking at two different issues relevant to informal carers.

First we would like to find out more about who the carers of people at the end of life are. Many carers do not identify themselves as carers and miss out on help that might be available to them. A research team in Scotland, led by Professor Scott Murray and working closely with our hospice in Edinburgh, is looking at ways of identifying carers of patients that are likely to be in the last year of their lives in GP practices. The aim of the project is to make it easier to inform these carers of services that might be of benefit to them.

Our Marie Curie Research Unit at University College London, in a project led by Dr Liz Sampson, is looking at those who live with people who are dying from cancer, dementia or chronic obstructive pulmonary disease (COPD, a lung disease). People with these conditions require increasing support from their family and friends and the research project will give us information on the cohabitees’ circumstances (demographics) and patterns of health and illness. Anecdotally, we know that carers often neglect their own health to look after their loved one.

But research is also trying to look into better ways of supporting informal carers at home. It has been shown that there is a real gap in evidence about how carers can be supported in everyday tasks. We now fund three projects that will go a long way into providing more evidence.

Dr Kate Fleming from the University of York is reviewing existing evidence on family carers’ perceptions of their educational needs when providing end-of-life care, to clarify what has already been done and highlight particular knowledge gaps.

Professor Sue Latter and colleagues at the University of Southampton are looking to help carers to manage their loved one’s pain medication so that they can die at home as comfortably as possible. This has been made particularly relevant by the findings of the VOICES survey last year, which highlighted the perception of carers that pain relief was worse at home than in hospital, hospices or care homes.

And finally, Professor Jane Seymour at Nottingham University is developing a carer support pack for carers who care for people at home in their last year of life, and training for professionals involved in helping carers.

Reflecting on this recently initiated research for the benefit of carers brings to mind a project funded by our Marie Curie Research Programme that is just coming to an end. It was one of the first batch of projects funded when we set up the first open and competitive research funding stream at Marie Curie in 2010. Its title ‘Unpacking the home: family and carers’ reflections on dying at home’ has captured the imagination of many people and we are awaiting the findings of the project with anticipation. The project involved interviewing people who cared for a relative or friend at home and reflects on their experience of seeing their home transformed and their loved one die.

Professor Sheila Payne and Dr Mary Turner from Lancaster University have discussed the preliminary findings from the interviews at recent conferences. Highlighting gaps in services and problems encountered, the interviews are nevertheless a tribute to all those who overcome obstacles to do what they think is right. We look forward to telling you more once the final results are available.

If you would like to find out more about the research we fund on informal carers, watch the videos of our Dimbleby Marie Curie Cancer Care Research Fund researchers and Professor Payne speaking about their projects.