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

Abstract Background Many 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 s...

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Main Authors: Laura D. Gamble, Fiona E. Matthews, Ian R. Jones, Alex E. Hillman, Bob Woods, Catherine A. Macleod, Anthony Martyr, Rachel Collins, Claire Pentecost, Jennifer M. Rusted, Linda Clare
Format: Article
Language:English
Published: BMC 2022-05-01
Series:BMC Geriatrics
Subjects:
Online Access:https://doi.org/10.1186/s12877-022-03086-4
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author Laura D. Gamble
Fiona E. Matthews
Ian R. Jones
Alex E. Hillman
Bob Woods
Catherine A. Macleod
Anthony Martyr
Rachel Collins
Claire Pentecost
Jennifer M. Rusted
Linda Clare
author_facet Laura D. Gamble
Fiona E. Matthews
Ian R. Jones
Alex E. Hillman
Bob Woods
Catherine A. Macleod
Anthony Martyr
Rachel Collins
Claire Pentecost
Jennifer M. Rusted
Linda Clare
author_sort Laura D. Gamble
collection DOAJ
description Abstract Background Many 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. Methods This 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. Results Findings 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. Conclusions This 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.
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spelling doaj.art-edfa93ec0a934f1c8488acc34f67cbec2022-12-22T00:38:21ZengBMCBMC Geriatrics1471-23182022-05-0122111210.1186/s12877-022-03086-4Characteristics of people living with undiagnosed dementia: findings from the CFAS Wales studyLaura D. Gamble0Fiona E. Matthews1Ian R. Jones2Alex E. Hillman3Bob Woods4Catherine A. Macleod5Anthony Martyr6Rachel Collins7Claire Pentecost8Jennifer M. Rusted9Linda Clare10Population Health Sciences Institute, Newcastle UniversityPopulation Health Sciences Institute, Newcastle UniversityWales Institute for Social and Economic Research and Data, Cardiff UniversityDepartment of Public Health, Policy and Social Sciences, College of Health and Human Sciences, Swansea UniversityDementia Services Development Centre Wales, School of Medical and Health Sciences, Bangor UniversityDementia Services Development Centre Wales, School of Medical and Health Sciences, Bangor UniversityREACH: The Centre for Research in Ageing and Cognitive Health, University of Exeter Medical SchoolREACH: The Centre for Research in Ageing and Cognitive Health, University of Exeter Medical SchoolREACH: The Centre for Research in Ageing and Cognitive Health, University of Exeter Medical SchoolSchool of Psychology, University of SussexREACH: The Centre for Research in Ageing and Cognitive Health, University of Exeter Medical SchoolAbstract Background Many 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. Methods This 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. Results Findings 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. Conclusions This 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.https://doi.org/10.1186/s12877-022-03086-4Alzheimer’sDepressionSleepApathyHallucinationsNeuropsychiatric symptoms
spellingShingle Laura D. Gamble
Fiona E. Matthews
Ian R. Jones
Alex E. Hillman
Bob Woods
Catherine A. Macleod
Anthony Martyr
Rachel Collins
Claire Pentecost
Jennifer M. Rusted
Linda Clare
Characteristics of people living with undiagnosed dementia: findings from the CFAS Wales study
BMC Geriatrics
Alzheimer’s
Depression
Sleep
Apathy
Hallucinations
Neuropsychiatric symptoms
title Characteristics of people living with undiagnosed dementia: findings from the CFAS Wales study
title_full Characteristics of people living with undiagnosed dementia: findings from the CFAS Wales study
title_fullStr Characteristics of people living with undiagnosed dementia: findings from the CFAS Wales study
title_full_unstemmed Characteristics of people living with undiagnosed dementia: findings from the CFAS Wales study
title_short Characteristics of people living with undiagnosed dementia: findings from the CFAS Wales study
title_sort characteristics of people living with undiagnosed dementia findings from the cfas wales study
topic Alzheimer’s
Depression
Sleep
Apathy
Hallucinations
Neuropsychiatric symptoms
url https://doi.org/10.1186/s12877-022-03086-4
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