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

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  • Laura Gamble
    Newcastle University
  • Fiona Matthews
    Newcastle UniversityUniversity of Cambridge
  • Ian Jones
    Cardiff University
  • Alex Hillman
    Swansea University
  • Bob Woods
  • Catherine MacLeod
  • Anthony Martyr
    University of Exeter Medical School
  • Rachel Collins
    University of Exeter Medical School
  • Claire Pentecost
    University of Exeter Medical School
  • Jennifer Rusted
    University of Sussex
  • Linda Clare
    University of Exeter Medical School

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.

Keywords

  • Alzheimer's, Depression, Sleep, Apathy, Hallucinations, Neuropsychiatric symptoms, Diagnosis
Original languageEnglish
Article number409
JournalBMC Geriatrics
Volume22
Issue number1
DOIs
Publication statusPublished - 10 May 2022

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