Researchers analysing data from people in Wales found the average time between dementia diagnosis and care home admission was 1.5 years. However, they also found that increased age, living alone, frailty, and living in more advantaged neighbourhoods were associated with quicker care home admission. Living in rural regions predicted a slower speed of admission.
The study was carried out using data from the Secure Anonymised Information Linkage (SAIL) Databank based at Swansea University. The SAIL Dementia e-Cohort (SAIL-DeC), which was used as the primary data source for the study, was set up with funding from DPUK. SAIL contains anonymised health data about the population of Wales, amounting to billions of records that can be analysed by researchers to generate new insights into medical conditions.
Lead author Dr Clarissa Giebel, a Research Fellow at the University of Liverpool and the NIHR ARC NWC, said: ‘Limited research to date has shown that people from less advantaged backgrounds can face difficulties in accessing the right care at the right time. We set out to examine whether socio-economic status or urban versus rural living were associated with the time between dementia diagnosis and care home admission.’
The study linked routine health data and the SAIL-DeC cohort of almost 35,000 people with dementia in Wales who had been admitted to a care home between 2000 and 2018. Analyses explored the effects of socio-economic status, living location, living situation and frailty on the time between diagnosis and admission.
Living in more disadvantaged neighbourhoods was significantly associated with slower time to care home admission in people with dementia across Wales. For the purposes of the study, neighbourhood deprivation was used as a proxy for individual‐level deprivation.
Dr Giebel said: ‘This is the first study of its kind to show how socio-economic status and geographical location are associated with time to care home admission in people with dementia across an entire nation. Confirming our hypothesis, people with dementia from more disadvantaged backgrounds and those living in more rural regions experienced a longer time between the point of dementia diagnosis and care home admission. Future research needs to explore the underlying reasons for these relationships, and the variations in care needs at the point of admission.’
Ashley Akbari, a Senior Research Manager and Data Scientist at Swansea University and HDR UK, who was one of the researchers who developed SAIL-DeC, said: ‘For dementia researchers around the world, having access to population-scale data on the people of Wales via the SAIL Databank is a great privilege and opportunity. The sheer scale of data available is mind-blowing: researchers have access to individual-level data for almost an entire population. The level of detail we hold at this scale is extremely rare for dementia research. It’s possible thanks to the world-leading technology we have here in Wales to support it.
‘Together, the data and the technology provide us with a unique opportunity to advance dementia research. The SAIL Databank and DPUK Data Portal are world-leading trusted systems that provide efficient and secure access to data. They provide us with the opportunity to bring expertise from multi-disciplinary groups including the NHS, academics, policymakers and members of the public to conduct research – and to empower them to have real impact on people’s lives and the services they receive.’
Read more about how DPUK funding led to the creation of the SAIL-DeC cohort. Researchers can apply to access SAIL-DeC data via the SAIL Databank website and application process.