Background: People with dementia (PwD) vary in the degree of awareness they show about their situation, both
generally concerning the diagnosis and more specifically around certain aspects or objects of awareness such as
awareness of memory impairment, altered daily activities or social functioning. The extent of awareness or lack ...
Background: People with dementia (PwD) vary in the degree of awareness they show about their situation, both
generally concerning the diagnosis and more specifically around certain aspects or objects of awareness such as
awareness of memory impairment, altered daily activities or social functioning. The extent of awareness or lack of
awareness has consequences for well-being of PwD and carers, impacting on rates of hospital admission,
institutionalization, mood, adjustment to diagnosis, outcomes from intervention and carer burden. An accurate estimation
of a person’s awareness could therefore be useful in a clinical setting to support PwD and their carers in making
appropriate choices for health and care decisions, and could facilitate safe management by health care professionals, e.g.
in an acute care setting. There is a range of different approaches to measuring awareness reported in the dementia
research literature, with varying estimates of the frequency of lack of awareness, reflecting different methodologies and
populations. The majority of the methods have been developed for research purposes and may not be suitable for
clinical use. There are no recent scoping or systematic reviews of the available methods.
Method: We will conduct a scoping review of published studies that have assessed awareness in people with dementia
of all types, and all degrees of severity. The systematic search will include the electronic databases PubMed, Embase,
PsycInfo, CINAHL, Web of Science and Cochrane Library, using search terms for dementia (“dement*” or “Alzheimer*” or
“Pick’s disease”) and “awareness”, “unawareness”, “anosognosia”, “insight”, “denial”, “metacognit*” or “discrepanc*” identified
from pilot searches. Findings will be mapped and described according to the method used, the setting and diagnosis
and the object of awareness studied if specified. Validated measures will be identified.
Discussion: This scoping review will provide an overview of the methods used to measure awareness in people
with dementia, allowing comparison of the methods along with identification of validated measures. The methods or
components will be appraised for potential clinical use, and gaps in research will be highlighted.