ReviewA systematic review of ‘knowledge of dementia’ outcome measures
Highlights
► 5 measures of ‘knowledge of dementia’ with published psychometric properties are currently in use. ► The ADKT is widely used and has established psychometric properties, yet some items are outdated. ► The ADKS is more up-to-date, yet has not been used beyond the original development study. The DQ appears to be most suitable for family carers. ► Contemporary, biopsychosocial, psychometrically robust measures are needed.
Introduction
In the UK, the ‘National Dementia Strategy’ (DoH, 2009) underlines the importance of improved knowledge of dementia. Raising awareness is linked with early detection, as this affords the person with dementia choices, and the power of decision making in planning their own care (DoH, 2009). Theoretically, the more one knows about dementia, the more likely one is to seek help (Ayalon and Arean, 2004) and poor knowledge of dementia may hinder seeking professional aid among patients and family members.
Staff involved in dementia care come from a variety of backgrounds and vary greatly in their amount of formal training and levels of knowledge of dementia. Pucci et al. (2003) found that experts’ knowledge of Alzheimer's disease (AD) was significantly better than general practitioners’, while levels of knowledge among nurses was lower than that of general practitioners (Barrett et al., 1997). Poor knowledge among healthcare professionals could result in a delay in diagnosis (Knopman et al., 2000) and a tendency to misrepresent symptoms, leading to inappropriate treatment (Edwards et al., 2000). Moreover, increasing the level of knowledge of dementia in health care professionals can help dispel unhelpful or biased attitudes towards dementia, which may influence discussions around resource allocation (Turner et al., 2004).
Measures of knowledge of dementia provide baseline data that highlight the potential gaps and inconsistencies of knowledge among those working in related treatment and care (Dieckmann et al., 1988, Barrett et al., 1997). Information gleaned from measures can be thus used for guiding educational programmes and interventions (Carpenter et al., 2009). Furthermore, knowledge of dementia can be viewed as an important outcome variable in examining the efficacy of psychosocial interventions (Cooke et al., 2001). Utilising a standardised and recognised tool for such purposes helps avoid biased results and serves to increase the methodological strength of studies (Burgio et al., 2001). Thus it is important that such measurement scales are of good quality with established psychometric properties.
The steps taken during the scale development process are imperative for instituting validity and reliability. Two phases are generally recommended (Allen and Yen, 1979). Firstly, the conceptual development phase involves development of the construct, consultation of expert opinion and focus groups, formation of an ‘item pool’, piloting on a representative sample, and retaining items selected on the basis of satisfying statistically based item-analysis procedures. Item analysis criteria that are generally used include item discrimination, item difficulty index, and pre-and post-test difference index (PPDI). In the second phase, the empirical evaluation should involve large-scale sampling with the target population and the validation study should include the sample for which the measure was developed (Bowling, 2009). It would be anticipated that a good quality measure would follow the said conceptual and empirical development process in preparation for general use.
The aim of the present study is to provide a systematic review and critical appraisal of published knowledge of dementia measures, in order to examine their strengths and limitations and to guide selection of the most appropriate tool for use within a particular research context.
Section snippets
Literature search
A three-step literature search was conducted: (1) identifying knowledge of dementia measures, (2) searching for studies using identified measures and (3) expansion by cross-referencing. The following databases were searched: Pubmed, MEDLINE, CINAL, HAPI (Health and Psychosocial Instruments), EBSCO and PsychINFO. For step 1, keywords used were: ‘dementia’, ‘Alzheimer*’, ‘knowledge’, ‘questionnaire’, ‘measure’, ‘instrument’, ‘quiz’, ‘test’, ‘care staff’, ‘nurs*, ‘general public’, ‘general
Details of included studies
Thirteen published measures were found from the literature search of which five met the inclusion criteria. Table 1 presents details of the measure development process for each of the five identified measures, along with the psychometric properties reported for each study. The main reasons for exclusion were unpublished psychometric properties or measures failing to be dementia specific in their focus.
In total, 31 studies were identified to fit the given criteria following steps 2 and 3 of the
Conclusions
Awareness of dementia is a pertinent topic, and standardised tools are key to establishing where gaps of knowledge lie among carers, healthcare professionals and the general public. All measures require periodic updates to keep pace with changes and information emerging from the expanding field of dementia. There are limitations to the measures evaluated, for example in terms of psychometric properties and target audiences. Further, existing measures display a high representation of the
Conflict of interest
None declared.
Acknowledgement
None.
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