Deprivation and informal care at the end of life

ADR Scotland's ‘Data Insights’ briefings share snapshots of findings from research projects using linked administrative data. This week, Scottish Centre for Administrative Data Research (SCADR) Research Fellow Anna Schneider PhD shares findings from her work on informal care at the end of life.

Informal care is a pillar of our healthcare systems: around one in eight people are identified as carers in the United Kingdom. At the end of life, unpaid carers (often family members or friends) provide substantial help with activities of daily living, including communication with healthcare professionals and handling medication. However, the availability of informal carers and factors influencing access to them are not well researched. Our research highlights that people who live in poorer neighbourhoods or have a lower socio-economic position themselves are more likely to live alone at the end of life and thus do not have access to informal care within their own household.

What we did and what we found

We linked the Scottish Census 2011 to death records and community health records to look at everyone who died within a year of the Census. We found:

• More than a third (34.1%) of people in their last year of life lived alone in 2011/12. People were more likely to live with others the closer they were to dying.
• Housing tenure is strongly connected to the risk of living alone: after controlling for differences in age, gender, cause of death, neighbourhood deprivation, and proximity to death, odds of living alone in the last year of life were 2.9 times higher for people in social housing and 2.3 times higher for people living in private rent than they were for home owners.
• Neighbourhood deprivation also influences the availability of informal care: people in the most deprived area quintiles of Scotland were 1.2 times as likely to live alone as those in the least deprived areas.

Why this matters

Survey research suggests many people would prefer to die at home. Moreover, with increasing death rates and population ageing leading to a higher need for care at the end of life, formal care resources are strained and support from informal carers is needed. In the Palliative and End of Life Care Strategic Framework for Action, the Scottish Government declared equal access to end of life care a goal. Our research shows that informal care, especially intense informal care at the end of life that requires the informal carer to live in the same household, is not equally available to all population groups.

Further information

For more information, download the full two-page data insights briefing or read more about SCADR's work on care in the last years of life.