Undiagnosed dementia in primary care: a record linkage study

Aldus, Clare F.; Arthur, Antony; Dennington-Price, Abi; Millac, Paul; Richmond, Peter; Dening, Tom; Fox, Chris; Matthews, Fiona E; Robinson, Louise; Stephan, Blossom C.M.; Brayne, Carol; Savva, George M.

Abstract

Background

The number of people living with dementia is greater than the number with a diagnosis of dementia recorded in primary care. This suggests that a significant number are living with dementia that is undiagnosed. Little is known about this group and there is little quantitative evidence regarding the consequences of diagnosis for people with dementia.
Objectives

The aims of this study were to (1) describe the population meeting the criteria for dementia but without diagnosis, (2) identify predictors of being diagnosed and (3) estimate the effect of diagnosis on mortality, move to residential care, social participation and well-being.
Design

A record linkage study of a subsample of participants (n = 598) from the Cognitive Function and Ageing Study II (CFAS II) (n = 7796), an existing cohort study of the population of England aged ≥ 65 years, with standardised validated assessment of dementia and consent to access medical records.
Data sources

Data on dementia diagnoses from each participant’s primary care record and covariate and outcome data from CFAS II.
Setting

A population-representative cohort of people aged ≥ 65 years from three regions of England between 2008 and 2011.
Participants

A total of 598 CFAS II participants, which included all those with dementia who consented to medical record linkage (n = 449) and a stratified sample without dementia (n = 149).
Main outcome measures

The main outcome was presence of a diagnosis of dementia in each participant’s primary care record at the time of their CFAS II assessment(s). Other outcomes were date of death, cognitive performance scores, move to residential care, hospital stays and social participation.
Results

Among people with dementia, the proportion with a diagnosis in primary care was 34% in 2008–11 and 44% in 2011–13. In both periods, a further 21% had a record of a concern or a referral but no diagnosis. The likelihood of having a recorded diagnosis increased with severity of impairment in memory and orientation, but not with other cognitive impairment. In multivariable analysis, those aged ≥ 90 years and those aged

Citation

Aldus, C. F., Arthur, A., Dennington-Price, A., Millac, P., Richmond, P., Dening, T., …Savva, G. M. (2020). Undiagnosed dementia in primary care: a record linkage study. Health Services and Delivery Research, 8(20), 1-108. https://doi.org/10.3310/hsdr08200

• Journal Article Type: Article
• Acceptance Date: Apr 17, 2020
• Publication Date: Apr 30, 2020
• Deposit Date: Apr 30, 2020
• Publicly Available Date: Oct 31, 2020
• Journal: Health Services and Delivery Research
• Print ISSN: 2050-4349
• Electronic ISSN: 2050-4357
• Publisher: NIHR Journals Library
• Peer Reviewed: Peer Reviewed
• Volume: 8
• Issue: 20
• Pages: 1-108
• DOI: https://doi.org/10.3310/hsdr08200
• Public URL: https://nottingham-repository.worktribe.com/output/4309626
• Publisher URL: https://www.journalslibrary.nihr.ac.uk/hsdr/hsdr08200#/abstract
• Additional Information: Contractual start date: 1-2016; Editorial review begun: 5-2018; Accepted for publication: 3-2019