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Longitudinal Trajectories of Awareness in Early-stage Dementia

Clare, Linda PhD*; Nelis, Sharon M. PhD*; Martyr, Anthony MSc*; Whitaker, Christopher J. MSc*; Marková, Ivana S. MD; Roth, Ilona DPhil; Woods, Robert T. MSc*; Morris, Robin G. PhD§

Alzheimer Disease & Associated Disorders: April-June 2012 - Volume 26 - Issue 2 - p 140–147
doi: 10.1097/WAD.0b013e31822c55c4
Original Articles

Although it is often assumed that awareness decreases as dementia severity increases, there is limited evidence regarding changes in awareness over time. We examined awareness in 101 individuals with early-stage dementia (PwD) and their carers; 66 were reassessed after 12 months and 51 were seen again at 20 months. Awareness was assessed in relation to memory, everyday activities, and socio-emotional functioning using discrepancies between PwD and carer ratings on parallel questionnaires. PwD completed neuropsychological tests and measures of mood and quality of life. Carers completed measures of mood and stress. At initial assessment, discrepancies were greatest for activities of daily living, moderate for memory, and least pronounced for socio-emotional functioning. Discrepancy scores did not change over time. PwD self-ratings indicated perceived poorer functioning in everyday activities over time, but no change for memory and socio-emotional functioning. Carer ratings indicated perceived decline in everyday activities and socio-emotional functioning, but no change for memory. PwD declined in neuropsychological functioning, but self-ratings of depression, anxiety, and quality of life remained stable over time. Carer mood and stress levels also remained stable. At least in the earlier stages of dementia, it should not be assumed that awareness will inevitably decrease as dementia progresses.

*Bangor University, Bangor

University of Hull, Hull

Open University, Milton Keynes

§Kings College London Institute of Psychiatry, London, UK

This study was funded by Economic and Social Research Council (ESRC) grant RES-062-23-0371 to L. Clare (PI), R.T. Woods, I.S. Markova, R.G. Morris, and I. Roth.

The authors declare no conflict of interest.Reprints: Linda Clare, PhD, School of Psychology, Bangor University, Bangor, Gwynedd LL57 2AS, United Kingdom (e-mail:

Received February 13, 2011

Accepted June 29, 2011

© 2012 Lippincott Williams & Wilkins, Inc.