Awareness in people with severe dementia: Review and integration

Abstract

Objective: Although awareness has been extensively researched in relation to people with dementia, studies have focussed mainly on people who have dementia of mild to moderate severity. Consequently, relatively little is known about awareness in people with severe dementia, and there is no clear conceptual framework to indicate how this should be understood or investigated.

Method: This review presents a conceptual framework for considering awareness in people with moderate to severe dementia which distinguishes fundamental awareness of sensory and perceptual stimuli and three levels of awareness involving more complex cognitive operations, termed ‘on-line monitoring’, ‘evaluative judgement’ and ‘meta-representation’, and provides an integration of the available evidence regarding each level.

Results: Findings indicate that sensory and perceptual awareness can be detected even in people with very severe or end-stage dementia, while some aspects of complex awareness may be retained into the severe stages.

Conclusions: The environmental context and the nature of caregiving interactions influence the extent to which awareness is expressed. There may be scope for enhancing the expression of some aspects of awareness in people with moderate to severe dementia, but this should only be undertaken where it is likely to improve quality of life. Understanding more about awareness is an important element in the provision of high-quality care for people with moderate to severe dementia.

Keywords:

• anosognosia
• insight
• caregiving
• Alzheimer's disease
• other dementias

Acknowledgements

The work presented here was supported by the UK Economic and Social Research Council (Grants RES-000-22-1308 and RES-062-23-0371) and Medical Research Council (Grant GO701817). Parts of this article were written while on study leave at The Pennsylvania State University, and special thanks are due to Steven Zarit and staff of the PSU Gerontology Center. The author thanks Julia Rowlands and Anthony Martyr for assistance with identifying relevant literature, and Errollyn Bruce, Fergus Craik, Murna Downs, Kate Jones, Brian Levine, Ivana Marková, Robin Morris, Morris Moscovitch, Ilona Roth, Claire Surr, Endel Tulving and Gordon Winocur for helpful comments and discussion.