Journal Article

The diagnosis, burden and prognosis of dementia: A record-linkage cohort study in England

Wilkinson, Tim, Hemingway, Harry, Whiteley, William N., Pujades-Rodriguez, Mar, Gonzalez-Izquierdo, Arturo, Sudlow, Cathie, Assi, Valentina, Schnier, Christian

2018

Overview

Electronic health records (EHR) might be a useful resource to study the risk factors and clinical care of people with dementia. We sought to determine the diagnostic validity of dementia captured in linked EHR. A cohort of adults in linked primary care, hospital, disease registry and mortality records in England, [CALIBER (CArdiovascular disease research using LInked Bespoke studies and Electronic health Records)]. The proportion of individuals with dementia, Alzheimer's disease, vascular and rare dementia in each data source was determined. A comparison was made of symptoms and care between people with dementia and age-, sex- and general practice-matched controls, using conditional logistic regression. The lifetime risk and prevalence of dementia and mortality rates in people with and without dementia were estimated with random-effects Poisson models. There were 47,386 people with dementia: 12,633 with Alzheimer's disease, 9540 with vascular and 1539 with rare dementia. Seventy-four percent of cases had corroborating evidence of dementia. People with dementia were more likely to live in a deprived area (conditional OR 1.26;95%CI:1.20-1.31 most vs least deprived), have documented memory impairment (cOR = 11.97;95%CI:11.24-12.75), falls (cOR = 2.36;95%CI:2.31-2.41), depression (cOR = 2.03; 95%CI:1.98-2.09) or anxiety (cOR = 1.27; 95%CI:1.23-1.32). The lifetime risk of dementia at age 65 was 9.2% (95%CI:9.0%-9.4%), in men and 14.9% (95%CI:14.7%-15.1%) in women. The population prevalence of recorded dementia increased from 0.3% in 2000 to 0.7% in 2010. A higher mortality rate was observed in people with than without dementia (IRR = 1.56;95%CI:1.54-1.58). Most people with a record of dementia in linked UK EHR had some corroborating evidence for diagnosis. The estimated 10-year risk of dementia was higher than published population-based estimations. EHR are therefore a promising source of data for dementia research.

• Publisher: Public Library of Science,Public Library of Science (PLoS)
• Subject: Adults / Aged / Aged, 80 and over / Aging / Alzheimer's disease / Anxiety / Brain research / Cardiovascular disease / Cardiovascular diseases / Care and treatment / Clinical medicine / Cognitive ability / Cohort analysis / Cohort Studies / Dementia / Dementia - diagnosis / Dementia - epidemiology / Dementia - mortality / Dementia disorders / Diagnosis / Diagnostic systems / Electronic health records / Electronic medical records / Electronic records / England - epidemiology / Epidemiology / Ethnicity / Female / Health care / Health informatics / Health sciences / Hospitals / Humans / Male / Medical diagnosis / Medical prognosis / Medical records / Medical research / Medicine and Health Sciences / Memory / Mental depression / Methods / Middle Aged / Mortality / Population / Prevalence / Primary care / Prognosis / Research and Analysis Methods / Risk analysis / Risk Factors / Sex Factors / Stroke / Studies / Vascular dementia