IDEAL Data linkage extension study

Not very much is known about the use and costs of healthcare by people with dementia in the UK. Information collected using the IDEAL study questionnaires is currently being analysed to generate evidence on the economic impacts of dementia – see an example of our recent work.

The data linkage study will build on this work to answer important questions about the economic impact of living with dementia that cannot be answered using the questionnaire data alone. There are difficulties in asking people to recall and report the services they had been using over the whole of the previous year, and so by linking English NHS data about service use and mortality to IDEAL questionnaire data, the study will provide information on use and costs of health services (such as hospital stays) over the passage of time by participants with dementia in England.

The LSE research team will examine how participants’ characteristics (such as age, sex, type of dementia and progression of dementia, living status, functional ability), recorded in the IDEAL dataset, influenced patterns of NHS service use and costs over time. The research will then look at how health care services used by participants with dementia impacted on their ability to live well with dementia.

The data linkage study will link English NHS data about service use and mortality to IDEAL questionnaire data from English participants who consented to data linkage at the second wave of the IDEAL study (2015–2017). The NHS and mortality data will be provided securely to the LSE research team by the NHS Digital Data Access Request Service.

The data will cover a continuous period of 5 years prior to participants’ entry to the IDEAL study, up to the end of the study’s two-year follow-up. The data will cover general and mental health hospital admissions, outpatient clinic and emergency department visits, care contacts with mental health practitioners and mortality.

The data will be securely stored and analysed by the LSE research team. Please see our Privacy Policy for more details, the most relevant section is called "The IDEAL project may also use your personal data in the following ways".