Measuring awareness in people with dementia: protocol for a scoping review

Abstract

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. Electronic supplementary material The online version of this article (10.1186/s13643-019-1078-5) contains supplementary material, which is available to authorized users.

Measuring Awareness in People With Dementia: Results of a Systematic Scoping Review

“… 46 , 47 This involves a systematic search of a broad range of literature leading to an overview or map of the relevant research with a descriptive analysis. 48 Our previously published protocol 49 used guidance from Preferred Reporting Items for Systematic Reviews and Meta-analysis-Protocol (PRISMA-P); 50 , 51 and this report follows the PRISMA extension for scoping review guidelines. 52 …”

“…Titles and abstracts were screened by 2 independent researchers for removal of inappropriate articles, with 98% agreement. Full texts of the remaining articles were examined according to eligibility criteria, as outlined below and detailed in our published protocol, 49 to produce a list of included articles. A second researcher screened a 10% sample of the full-text articles for selection, reaching 92% agreement.…”

The bite is worse than the bark: Associations of personality and depressive symptoms with memory discrepancy.

“…Awareness can be defined as the ability to accurately appraise one's own functioning in a given domain (Roberts et al, 2009). Awareness of cognitive deficits has been extensively researched in neurodegenerative conditions such as Alzheimer's disease (AD; Alexander et al, 2019;Clare, 2004aClare, , 2004bMcGlynn & Kaszniak, 1991). AD degrades important functions such as memory and attention, which in turn are relevant for the immediate ability to judge cognitive performance in a domain-specific manner (Hannesdottir & Morris, 2007).…”