Care in the last years of life

Our research

The overall aim of this study is to develop an understanding of factors influencing the availability and utilisation of formal and informal care in Scotland during the final stages of life, and study trends over time. The research explores:

• What was the household structure of people in the last days of life in 2001 and in 2011, at national and local level? 
• Did household structure change with proximity to death? 
• How did the household structures of people in their last days of life at the 2011 Census compare with people who were still alive a year later? How did these differences compare with the situation at the 2001 Census? 
• To what extent was place of death predicted by living arrangements at the Census preceding death? 
• Did changes in household structure explain trends in place of death in 2011 relative to 2001 amongst people with cancer, at a national and local level? 
• What was the impact of household structure (and specifically living alone) on hospital admission patterns prior to death? 
• Did the effects of household structure differ by place of residence, by socio-economic status, or by socio-demographic status? 
• What impact does informal care have on health and social care services, specifically with regards to hospital and nursing home admissions? 
• What were the cost implications to formal care of living arrangements in the final stages of life? 

A second phase of the study will then aim to develop understanding of factors influencing the availability of informal care during the final stages of life and how this impacts on formal care use. This will look to:

• explore the extent to which informal care leads to avoidance (or otherwise) of hospitalisations in Scotland, and
• critically assess whether there is evidence to support a belief that retirement migration markedly increases demands for formal social care in NHS Highland.

Data this research aims to link and analyse

• Inpatients and day case records in Scotland
• Cancer registration 
• Prescribing Information System
• CHI (Community Health Index)
• 2001 and 2011 Census
• Deaths register

Research team

Jan Savinc, Edinburgh Napier University, Scottish Centre for Administrative Data Research

Dr Iain Atherton, Edinburgh Napier University, Scottish Centre for Administrative Data Research

Publications and outputs

• DATA INSIGHTS: Deprivation and informal care at the end of life, October 2019

• PALLIATIVE CARE AT HOME: implications of the Covid-19 pandemic and into the future, March 2021

When further publications or outputs are available, they will be shared here. For more information about this project, please contact us.