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Characteristics of people living with undiagnosed dementia: findings from the CFAS Wales study

Laura D. Gamble, Fiona E. Matthews, Ian R. Jones, Alex Hillman, Bob Woods, Catherine A. Macleod, Anthony Martyr, Rachel Collins, Claire Pentecost, Jennifer M. Rusted, Linda Clare

BMC Geriatrics, Volume: 22, Issue: 1

Swansea University Author: Alex Hillman

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Abstract

BackgroundMany people living with dementia remain undiagnosed, with diagnosis usually occurring long after signs and symptoms are present. A timely diagnosis is important for the wellbeing of the person living with dementia and the family, allowing them to plan and have access to support services so...

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Published in: BMC Geriatrics
ISSN: 1471-2318
Published: Springer Science and Business Media LLC 2022
Online Access: Check full text

URI: https://cronfa.swan.ac.uk/Record/cronfa60747
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Abstract: BackgroundMany people living with dementia remain undiagnosed, with diagnosis usually occurring long after signs and symptoms are present. A timely diagnosis is important for the wellbeing of the person living with dementia and the family, allowing them to plan and have access to support services sooner. The aim of this study was to identify demographic characteristics and neuropsychiatric symptoms associated with being undiagnosed, which may help clinicians be more aware of signs that could be indicative of early-stage or undetected dementia.MethodsThis cross-sectional study uses data from waves 1 and 2 (two years apart) of the Cognitive Function and Ageing Studies Wales (CFAS Wales). CFAS Wales participants were included who had a study assessment of dementia, as determined by the Automated Geriatric Examination for Computer Assisted Taxonomy (AGECAT) algorithm and by expert assessment, and who had had their primary care records checked for a clinical diagnosis of dementia. We identified 19 people with a diagnosis of dementia and 105 people living with undiagnosed dementia, and explored demographic characteristics and the presence or absence of a range of neuropsychiatric symptoms in the undiagnosed population using logistic regression.ResultsFindings suggest that people living with dementia who have better cognition, have more years of education, or live in more deprived areas are less likely to have a diagnosis. In terms of neuropsychiatric symptoms, depression and sleep problems were associated with being undiagnosed. Apathy was common across all people living with dementia, but those with a diagnosis were more likely to have severe apathy.ConclusionsThis study has clinical practice implications as the findings may help clinicians be more aware of characteristics and symptoms of people who are undiagnosed or who are at greater risk of remaining undiagnosed, enabling them to be more vigilant in picking up signs of dementia at an earlier stage.
Keywords: Alzheimer’s, Depression, Sleep, Apathy, Hallucinations, Neuropsychiatric symptoms, Diagnosis
College: Faculty of Medicine, Health and Life Sciences
Funders: The CFAS Wales study was supported by the Economic and Social Research Council (ESRC) through grant number RES_060-25–0060. Investigators: R.T. Woods, K. Bennett, C. Brayne, V. Burholt, L. Clare, F. Matthews, C. McCracken, J. Phillips, and G. Windle. ESRC is part of UK Research and Innovation (UKRI). This report is independent research supported by the National Institute for Health and Care Research Applied Research Collaboration South West Peninsula. The views expressed in this publication are those of the author(s) and not necessarily those of the ESRC or the UKRI. The support of ESRC and NIHR is gratefully acknowledged.
Issue: 1