- Home
- Administrative data
- Our research
- About us
- Contact us
- News and events
- BLOG - Access to secure data during the COVID-19 pandemic - a model for the future?
- COVID-19 and Care Homes: Advances in Administrative Data Research during the pandemic
- DATA INSIGHTS: Deprivation and informal care at the end of life
- NEWS - Innovative new residential linkage tool launched
- BLOG - Spotlight on Dr Elizabeth Lemmon
- BLOG - Spotlight on Jan Savinc
- DATA INSIGHTS - Youth Movements, Social Mobility and Health Inequalities
- NEWS - New report warns of deepening poverty crisis for Scottish families
- New report on Infants Born into Care in Scotland
- BLOG - The value of social science and administrative data research in Scotland: how we are helping respond to COVID-19
- DATA INSIGHTS - Exploring illegal drug consignments in Scotland
- DATA INSIGHTS: Linking two administrative data sets about looked after children
- Virtual Conference - Data Linkage: Information to Impact
- BLOG SERIES - Dramatic increase in deaths at home
- BLOG SERIES - Dramatic increase in deaths at home- No.3
- DATA INSIGHTS - Selective schools: do they improve health?
- NEWS - Understanding the dynamics of the nursing workforce: the potential of routinely collected data
- BLOG - Spotlight on Fernando Pantoja
- BLOG: Developing a cross-national research agenda on crime and convictions
- DATA INSIGHTS - The health and economic benefits of active commuting in Scotland
- BLOG - AGEING AND HOMELESSNESS IN SCOTLAND
- BLOG: Can we use linked administrative data to identify social disadvantage?
- EVENT - ADR UK Virtual Half Day event
- Event - Public data for public good: towards better understanding children's lives
- NEWS: Our role supporting the new COVID-19 research data service in Scotland
- BLOG - An Inside Job: Using Criminology, Police Data and a Lot of Nouse
- BLOG - Location of death in 2020: a changing trend from hospitals to homes
- BLOG - Seeking feedback on Research Data Scotland’s core principles via our public panel
- BLOG - Spotlight on Dr Patricio Troncoso
- BLOG - What skills, training and support are required by those wishing a career as an administrative data researcher?
- BLOG: 5 things I've learnt about working with policymakers...
- BLOG: Automating Coding for Large Historical Datasets
- BLOG: COVID-19- How increased deaths at home impact the carer community
- EVENT - Linking public sector data for research: an ADR UK showcase event
- EVENT Seminar - Administrative data for social policy research: potential and pitfalls
- NEWS - Additional funding for Understanding Children’s Lives and Outcomes
- NEWS: Police use of Fixed Penalty Notices under the Covid-19 regulations in Scotland: A new data report highlights links with deprivation and inequality
- NEWS: Police use of the new Covid-19 powers: Using administrative data to analyse and evaluate practice
- Directorship of the International Population Data Linkage Network (IPDLN) for 2021-22.
- BLOG: In the light of experience: InterRAI and the final thousand days of life
- DATA INSIGHTS: multiple health conditions and social care
- NEWS - Susan McVie elected as Fellow of the Academy of Social Sciences
- SCADR relocates to the Bayes Centre
- EVENT: Four day introduction to using administrative data for social and health research
- BLOG: The value of administrative data: DALYs and the Scottish Burden of Disease study
- BLOG: Where to start with parliamentary and policy engagement
- EVENT - International Conference on Administrative Data Research, Cardiff
- EVENT - Using data to realise the potential of the 'Last 1000 days'
- EVENT: TalkingData: ADR Scotland mini-summit
- EVENT: “Let’s use data to save time, money and lives”: ADR Scotland partners gather for mini-summit
- EVENTS: ADR Scotland researchers present at international conference in Cardiff
DATA INSIGHTS - Deprivation and informal care at the end of life
Our ‘Data Insights’ briefings share snapshots of findings from research being conducted across the centre.
This week, Research Fellow Anna Schneider Ph.D shares findings from her work on informal care at the end of life. You can read excerpts below, or the full two-page briefing.
Informal care is a pillar of our healthcare systems: around 1 in 8 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 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 our work on care in the last years of life.
-
This item was written as part of the work of the Scottish Centre for Administrative Data Research, within the ADR Scotland partnership, funded by UKRI/ESRC.
This article was published on 14 Oct 2019