This study used GP records to examine the health of people living with terminally ill relatives. It suggested that GPs significantly under-report the number of people who act as carers. Underestimating these numbers makes it more difficult to ensure that carers get the support they need from health services and beyond.

Why was this work needed?

This study used GP records to examine the health of people living with terminally ill relatives. It suggested that GPs significantly under-report the number of people who act as carers. Underestimating these numbers makes it more difficult to ensure that carers get the support they need from health services and beyond.

What happened?

This research used a primary care database to identify over 13,000 people who were over sixty and had lived with someone who had died of COPD, dementia or cancer. Sharing a home was used as a useful way of identifying people who would probably have played a caring role. The researchers then examined health data of these people a year before and a year after their terminally ill relative died.

The research found that the number of people visiting the GP more than six times rose in the year after their bereavement. The study also found that the death rate among carers after their bereavement was not affected by the condition their loved one had. Only 6.9% of the people included in the study were actually registered as carers.

What were the benefits?

This research allows us to understand more about the many people in the UK who care for terminally ill relatives. Knowledge like this can ensure that carers get the support they need. However, it also suggests that GPs are significantly under-reporting the number of people acting in this role. Underestimating numbers means that people acting as carers risk being overlooked by the health services.

What type of data was involved?

This research used The Health Improvement Network (THIN) - a database of GP records which 500 GP surgeries contribute information to.

The THIN scheme was approved by the National Health Service South-East Multicentre Research Ethics Committee in 2002. This study received approval from the Scientific Review Committee. Data was de-personalised before being shared with researchers. 

Who funded and collaborated on this work?

This study was funded by the Dimbleby Marie Curie Cancer Care Research Fund.

Where can I go for more information?

Living With an Older Person Dying From Cancer, Lung Disease, or Dementia: Health Outcomes From a General Practice Cohort Study