Exploring longitudinal changes in implicit awareness of dementia: An investigation of the emotional Stroop effect in healthy ageing and mild dementia.

The aim of the study was to investigate responses to dementia-relevant words in healthy older people and to investigate changes in response over 20-months in people with early-stage dementia. An emotional Stroop task, using colour-naming dementia-relevant words, was used as an indicator of implicit awareness of dementia. Overall, 24 people with dementia and 24 healthy older people completed an emotional Stroop task (T1). People with dementia completed the same task again after 12 (T2) and 20 (T3) months. For people with dementia emotional Stroop performance was contrasted with ratings of explicit awareness based on a detailed interview at T1 and at T2. For healthy older people and people with dementia response times to dementia-relevant words were significantly longer than those for neutral words. The effect was absent for people with dementia at T3. This decline in the emotional Stroop effect was not associated with cognitive decline as measured by the MMSE. Ratings of explicit awareness showed no significant change over time. There was no association between explicit awareness and implicit awareness. Implicit awareness of the condition is evident in early-stage dementia and can be elicited even where there is reduced explicit awareness. The emotional Stroop effect for dementia-relevant words in people with dementia appears to decline over time, independently of changes in MMSE score, suggesting that implicit awareness fades as time progresses.

Ethiopian community health workers' beliefs and attitudes towards children with autism: Impact of a brief training intervention.

There is a severe shortage of services for children with autism in Ethiopia; access to services is further impeded by negative beliefs and stigmatising attitudes towards affected children and their families. To increase access to services, care provision is decentralised through task-shifted care by community health extension workers. This study aimed to examine the impact of a brief training (Health Education and Training; HEAT) for Ethiopian rural health extension workers and comprised three groups: (1) health extension workers who completed a basic mental health training module (HEAT group, N = 104); (2) health extension workers who received enhanced training, comprising basic HEAT as well as video-based training on developmental disorders and a mental health pocket guide (HEAT+ group, N = 97); and (3) health extension workers untrained in mental health (N = 108). All participants completed a questionnaire assessing beliefs and social distance towards children with autism. Both the HEAT and HEAT+ group showed fewer negative beliefs and decreased social distance towards children with autism compared to the untrained health extension worker group, with the HEAT+ group outperforming the HEAT group. However, HEAT+ trained health extension workers were less likely to have positive expectations about children with autism than untrained health extension workers. These findings have relevance for task-sharing and scale up of autism services in low-resource settings worldwide.

The motivation for special interests in individuals with autism and controls: Development and validation of the special interest motivation scale.

Clinical observations and first person accounts of living with autism suggest that individuals with autism are highly motivated to engage in special interests, and that these interests remain important throughout life. Previous research assessing special interests has mainly focused on parental reports of children with autism spectrum conditions (ASC). To better understand the significance of and motivations for engaging in special interests it is essential to use self-report ratings. This paper aims to systematically explore the motivations for engagement in special interests, and whether these differ in adults with ASC, first-degree relatives and general population controls. The Special Interest Motivation Scale (SIMS) was developed to assess motivation to engage in special interests. The internal structure of this scale was evaluated using factor analysis, and mean scores on the SIMS factors were subsequently compared across individuals with autism, parents and general population controls. Factor analysis indicated a 20-item SIMS containing five factors assessing Personal life values and goals; Intrinsic interest and knowledge; Prestige; Engagement and "flow" and Achievement. Individuals with autism were more motivated by Intrinsic interest and knowledge and by Engagement and flow than controls. The 20-item SIMS is a quick to administer measure that provides a reliable description of motivation to engage in special interests. This study indicates that individuals with ASC are highly motivated to engage in their special interest, and are more motivated than controls by intrinsic motivational factors, some of which are associated with positive affect. This has implications for research and clinical practice. Autism Res 2016, 9: 677-688. © 2015 International Society for Autism Research, Wiley Periodicals, Inc.

Awareness of memory task impairment versus everyday memory difficulties in dementia.

The study investigated different types of awareness of memory dysfunction in dementia, specifically judgements concerning memory task performance or appraisal of everyday memory functioning and also exploring the neuropsychological correlates of such awareness. This was investigated in 76 people with dementia, comprising 46 patients with Alzheimer's disease (AD) and 30 patients with vascular dementia (VaD). The Memory Awareness Rating Scale (Clare et al., 2002, Neuropsychol Rehabil, 12, 341-362) was used, which includes an Objective-Judgement Discrepancy (OJD) technique involving comparison of subjective evaluation of performance on specific memory tasks with actual performance, and a Subjective Rating Discrepancy (SRD) technique, which compares self versus informant judgement of everyday memory function. The AD and VaD groups showed lower awareness than a normal control group for both types of measures, the AD group showing less awareness than the VaD group on the OJD measure. Regression analyses supported associations for both groups between memory impairment and the OJD measure and between naming impairment and the SRD measure. The findings are discussed in terms of neurocognitive theories accounting for loss of awareness in dementia.

What contributes to a good quality of life in early dementia? Awareness and the QoL-AD: a cross-sectional study.

BACKGROUND: Self-report quality of life (QoL) measures for people with dementia are widely used as outcome measures in trials of dementia care interventions. Depressed mood, relationship quality and neuropsychiatric symptoms predict scores on these measures, whereas cognitive impairment and functional abilities typically do not. This study examines whether these self-reports are influenced by personality and by the person's awareness of his/her impairments. A strong negative association between QoL and awareness of deficits would have implications for the validity of self-report in this context and for therapeutic interventions aiming to increase adjustment and coping. METHODS: Participants were 101 individuals with early‒stage dementia and their family carers participating in the Memory Impairment and Dementia Awareness (MIDAS) Study. QoL was assessed using the QoL-AD scale, and awareness was assessed in relation to memory, activities of daily living and social functioning. Self-concept, conscientiousness, quality of relationship and mood were assessed and a brief neuropsychological battery administered. Carers rated their own stress and well-being and reported on neuropsychiatric symptoms. A series of regression analyses predicting QoL-AD were carried out, identifying key variables in each domain of assessment to take forward to an overall model. RESULTS: Cognitive impairment was not related to QoL. The final model accounted for 57% of the variance in QoL-AD scores, with significant contributions from depressed mood, severity of irritability shown by the person with dementia, self-concept, quality of relationship (rated by the person with dementia) and male gender. The bivariate relationships of QoL-AD with awareness of memory function, awareness of functional abilities and conscientiousness were mediated by both depressed mood and self-concept. CONCLUSIONS: This study reports the most comprehensive approach to evaluation of awareness to date. Most of the indices of awareness used are not related to self-reported QoL. Discrepancies in evaluative judgements of memory function and functional abilities between people with dementia and carers are related to QoL, but this relationship is mediated by both depressed mood and self-concept, which have a much stronger relationship with QoL. The validity of self-report measures of QoL in people with early stage dementia is supported by these results.

Phenomena of awareness in dementia: heterogeneity and its implications.

Despite much research on the relationship between awareness and dementia little can be concluded concerning their relationship and the role of other factors. It is likely that studies capture different phenomena of awareness. This study aimed at identifying and delineating such variation by analysing data from three questionnaires obtained during the longitudinal study of awareness in 101 people with early-stage dementia. The data concerned awareness in relation to memory, activities of daily living and socio-emotional function. Significant differences in patterns of discrepancies were obtained. This suggests that the awareness phenomena involved were structurally different; and that, in turn, this may reflect variation in the intrinsic linking between awareness and its 'object' (different 'objects' determining different kinds of judgements). The identification of such differences is necessary so that appropriate methodologies can be applied to the study of awareness in different contexts.

Trajectories of quality of life in early-stage dementia: individual variations and predictors of change.

BACKGROUND: Little evidence is available about how quality of life (QoL) changes as dementia progresses. OBJECTIVES: We explored QoL trajectories over a 20-month period and examined what predicted change in QoL. METHOD: Fifty-one individuals with a diagnosis of Alzheimer's, vascular or mixed dementia (people with dementia (PwD)) participating in the Memory Impairment and Dementia Awareness Study rated their QoL using the QoL-Alzheimer's Disease Scale at baseline and at 20-month follow-up. PwD also rated their mood and quality of relationship with the carer. In each case, the carer rated his or her level of stress and perceived quality of relationship with the PwD. RESULTS: There was no change in mean QoL score. Nearly one-third of PwD rated QoL more positively at 20-month follow-up and nearly one-third rated QoL more negatively. These changes could be regarded as reliable in one-quarter of the sample. Participants taking acetylcholinesterase-inhibiting medication at baseline were more likely to show a decline in QoL score. There were no other significant differences between those whose scores increased, decreased or stayed the same on any demographic or disease-related variables, or in mood or perceived quality of relationship with the carer. Whereas baseline QoL score was the strongest predictor of QoL at 20 months, the quality of relationship with the carer as perceived by the PwD was also independently a significant predictor. CONCLUSIONS: There is a degree of individual variation in QoL trajectories. Use of acetylcholinesterase-inhibiting medication appears linked to decline in QoL score, whereas positive relationships with carers play an important role in maintaining QoL in early-stage dementia.

Memory awareness profiles differentiate mild cognitive impairment from early-stage dementia: evidence from assessments of performance monitoring and evaluative judgement.

BACKGROUND: Measures of memory awareness based on evaluative judgement and performance monitoring are often regarded as equivalent, but the Levels of Awareness Framework suggests they reflect different awareness phenomena. Examination of memory awareness among groups with differing degrees of impairment provides a test of this proposition. METHOD: Ninety-nine people with dementia (PwD), 30 people with mild cognitive impairment (PwMCI), and their relatives completed isomorphic performance monitoring and evaluative judgement measures of memory awareness and were followed up at 12 and (PwD only) 20 months. In addition to the resulting awareness indices, comparative accuracy scores were calculated using the relatives' data to establish whether any inaccuracy was specific to self-ratings. RESULTS: When making evaluative judgements about their memory in general, both PwD and PwMCI tended to overestimate their own functioning relative to informant ratings made by relatives. When monitoring performance on memory tests, PwD again overestimated performance relative to test scores, but PwMCI were much more accurate. Comparative accuracy scores indicated that, unlike PwD, PwMCI do not show a specific inaccuracy in self-related appraisals. CONCLUSIONS: The results support the proposition that awareness indices at the levels of evaluative judgement and performance monitoring should be regarded as reflecting distinct awareness phenomena.

Self-concept in early stage dementia: profile, course, correlates, predictors and implications for quality of life.

OBJECTIVE: Although it is increasingly accepted that people with dementia retain a sense of self, there is a need for empirical evidence regarding the nature of the self-concept in early stage dementia, how this changes over time and how it relates to quality of life. METHODS: Self-concept was assessed using the short form of the Tennessee Self-concept Scale in 95 individuals with early stage dementia; 63 were reassessed after 12 months, and 45 were seen again at 20 months. Participants also completed measures of mood, cognitive functioning and quality of life. Caregivers provided proxy ratings of self-concept, completed measures of symptoms and distress at symptoms and rated their own levels of stress and well-being. RESULTS: Self-ratings of self-concept were close to the average range for the standardization sample, and the distribution did not differ significantly from expected values. Although caregiver ratings were slightly lower, discrepancies were small. There were no significant changes over time in self-ratings or informant ratings or discrepancies. At Time 1, self-ratings were predicted by anxiety, depression and memory, caregiver ratings were predicted by caregiver distress and by depression in the person with dementia and discrepancies were predicted by caregiver distress. These models remained predictive at later time points. Self-rated self-concept predicted quality of life, with the relationship only partially mediated by depression and anxiety. CONCLUSIONS: Self-concept appears largely intact in early stage dementia, but in view of the association between self-concept and quality of life, a preventive approach focused on supporting self-concept may offer benefits as dementia progresses.

Verbal fluency and awareness of functional deficits in early-stage dementia.

Assessment of activities of daily living is an important element in the diagnosis of dementia, with research suggesting a link between functional ability and cognition. We investigated the relationship between self- and informant ratings of instrumental activities of daily living (iADL) and verbal executive functioning in early-stage dementia. A total of 96 people with early-stage Alzheimer's disease or vascular or mixed dementia and their carers completed the Functional Activities Questionnaire; people with dementia also completed a test of letter fluency. Letter fluency was associated with self-ratings of iADL, while informant ratings of iADL were associated with the age and Mini-Mental State Examination score of the person with dementia. Self-ratings of perceived functioning suggested significantly less impairment than informant ratings. Those with impaired letter fluency rated themselves as having greater difficulties in iADLs than those who performed better. People with early-stage dementia vary in their subjective level of awareness of their iADL functioning, and difficulties with language production may contribute to better awareness of iADL impairments.

'She might have what I have got': the potential utility of vignettes as an indirect measure of awareness in early-stage dementia.

OBJECTIVES: In early-stage dementia, awareness at the meta-representational level involving a person's appraisal of his/her own condition and its implications has usually been assessed by interview, but contextual factors may influence responding. We examined the utility of an indirect, vignette-based method of eliciting awareness. METHOD: Three vignettes describing early-stage dementia, established dementia and healthy ageing were used to elicit views of the problem and the kinds of advice that might be helpful for the characters depicted. Responses were obtained from 91 people with early-stage Alzheimer's, vascular or mixed dementia, 87 carers and 80 older controls. For the participants with dementia, awareness was assessed in separate in-depth interviews and rated on a five-point scale for comparison purposes. RESULTS: Participants with dementia were often able to correctly identify the problems described in the vignettes, although scoring lower than carers or controls. Participants with dementia were also able to offer advice for those depicted, although to a lesser extent than carers or controls. Ability to offer advice was greater where MMSE scores were higher. For participants with dementia, vignette scores were moderately correlated with ratings derived from interviews, and those showing limited or no awareness offered fewer items of advice than those showing some or good awareness. In addition, 29% of participants with dementia spontaneously pointed out similarities between their own condition and that of the person depicted. CONCLUSIONS: The vignette method may be useful where resources preclude the use of in-depth interviews, and may supplement in-depth interviews as part of a multi-dimensional assessment of awareness.

Longitudinal trajectories of awareness in early-stage dementia.

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.

The influence of psychological, social and contextual factors on the expression and measurement of awareness in early-stage dementia: testing a biopsychosocial model.

BACKGROUND: Insufficient attention has been paid to the influence of psychological and social factors on discrepancy-based measures of awareness. OBJECTIVES: The present study tested a biopsychosocial model of awareness in early-stage dementia by gathering evidence regarding the relative contributions of neuropsychological, individual psychological and social factors to the level of scoring on measures used to index awareness. METHOD: Awareness was assessed in relation to memory, activities of daily living and social functioning in 101 individuals with early-stage dementia participating in the Memory Impairment and Dementia Awareness (MIDAS) Study. People with dementia (PwD) and carers also completed measures of individual psychological and social variables, and PwD completed measures of neuropsychological functioning. RESULTS: Scores on discrepancy-based indices of awareness and on the self-ratings and informant ratings contributing to these indices were associated with a range of factors including neuropsychological functioning of PwD, individual traits and dispositions and current affective functioning of PwD, socio-demographic characteristics of PwD and carers, carer well-being and carer perceptions of PwD and of quality of relationship with PwD. Patterns of association varied across domains of functioning. CONCLUSIONS: The findings support the relevance of a biopsychosocial approach to understanding the factors that influence unawareness of impairment in dementia.

Marital relationship quality in early-stage dementia: perspectives from people with dementia and their spouses.

Spouse caregivers of people with dementia (PwD) report relatively poor marital relationship quality (RQ), but few studies have obtained the perspective of the PwD, examined discrepancies between spouses, or considered changes in RQ over time. This study explored caregiver and PwD perceptions of RQ, identified associated factors, and examined changes over an 18-month period. Participants were 54 couples where one spouse had early-stage dementia and 54 were control couples. RQ was assessed with the Positive Affect Index. Measures of mood, stress, and quality of life (QoL) were also administered. The clinical couples were followed up after 9 and 18 months. Caregivers gave significantly lower RQ ratings than controls. PwD ratings did not differ significantly from those of caregivers or controls. Dyadic discrepancies were significantly greater in the clinical than in the control group. Caregiver ratings were associated with stress, whereas PwD ratings were associated with depression and QoL. Discrepancies were associated with caregiver stress and with PwD mood, QoL, and age. Caregiver ratings declined significantly over time; PwD ratings did not decline significantly, but showed different trends for men and women. It is important to consider RQ when considering how to support couples where one partner has early-stage dementia.

Awareness of social and emotional functioning in people with early-stage dementia and implications for carers.

OBJECTIVES: This study explores the extent to which awareness of social and emotional function is reduced in early-stage dementia and whether this relates to the quality of life of the person with dementia (PwD), the quality of the relationship between the PwD and carer and carer stress. METHOD: Ninety-seven participants with a diagnosis of Alzheimer's, vascular or mixed dementia rated their social functioning using the Socio-Emotional Questionnaire (SEQ). Carers provided parallel ratings, allowing calculation of discrepancy scores used to index awareness. Neuropsychiatric symptoms, PwD quality of life, the perceived quality of the relationship for both partners and carer stress were also measured. RESULTS: Factor analysis of the SEQ indicated three domains of social functioning: emotional recognition and empathy (ERE), social relationships (SR) and prosocial behaviour (PB). For PwD unawareness was related to cognitive dysfunction and psychiatric disturbance, but not to quality of life or quality of relationship. Lower awareness was associated with greater carer stress and poorer perceived quality of relationship. CONCLUSION: Lack of awareness of social functioning had important implications for relationship quality and levels of carer stress.

Awareness in Alzheimer's disease and associated dementias: theoretical framework and clinical implications.

BACKGROUND: Awareness can be defined as a reasonable or realistic perception or appraisal of a given aspect of one's situation, functioning or performance, or of the resulting implications, expressed explicitly or implicitly. Disturbances of awareness have significant implications for people with dementia and their caregivers. The construction of awareness has been extensively studied in dementia, but a lack of conceptual and methodological clarity in this area means that few clear findings have emerged. AIMS: This article presents a framework for conceptualizing awareness in people with Alzheimer's disease and associated dementias that can guide research and influence practice. OVERVIEW: This article begins by considering the general concept of awareness and the ways in which neurological damage can place constraints on awareness. Within an integrative biopsychosocial model that acknowledges the influence of neurocognitive, psychological, and social variables on awareness, challenges for empirical research on awareness in dementia are addressed, and a 'levels of awareness' framework is presented within which awareness operates at four levels of increasing complexity, providing a means of differentiating among awareness phenomena. Approaches to mapping awareness phenomena are discussed, and directions for future research and clinical practice are outlined. CONCLUSIONS: The levels of awareness framework should act as a stimulus to further research in this area, resulting in a more coherent understanding of the nature of awareness deficits, the implications of these for people with dementia and their caregivers, and the possibilities for targeted and effective interventions.

Multidimensional assessment of awareness in early-stage dementia: a cluster analytic approach.

BACKGROUND/AIMS: Research on awareness in dementia has yielded variable and inconsistent associations between awareness and other factors. This study examined awareness using a multidimensional approach and applied cluster analytic techniques to identify associations between the level of awareness and other variables. METHODS: Participants were 101 individuals with early-stage dementia (PwD) and their carers. Explicit awareness was assessed at 3 levels: performance monitoring in relation to memory, evaluative judgement in relation to memory, everyday activities and socio-emotional functioning, and metacognitive reflection in relation to the experience and impact of the condition. Implicit awareness was assessed with an emotional Stroop task. RESULTS: Different measures of explicit awareness scores were related only to a limited extent. Cluster analysis yielded 3 groups with differing degrees of explicit awareness. These groups showed no differences in implicit awareness. Lower explicit awareness was associated with greater age, lower MMSE scores, poorer recall and naming scores, lower anxiety and greater carer stress. CONCLUSION: Multidimensional assessment offers a more robust approach to classifying PwD according to level of awareness and hence to examining correlates and predictors of awareness.

Dissociation between implicit and explicit manifestations of awareness in early stage dementia: evidence from the emotional Stroop effect for dementia-related words.

OBJECTIVE: To determine whether people with dementia (PwD), and carers of PwD, show a processing bias to dementia-related words in an emotional Stroop task, and if so, whether the presence of such a bias is related to level of explicit awareness of the condition. METHOD: Seventy-nine people with early stage Alzheimer's disease (AD), vascular or mixed dementia, and their carers, completed an emotional Stroop task. Time taken to colour-name dementia-related and neutral words was compared within and between groups. Additionally, as a comparison, ratings of the awareness of the condition shown by PwD were made on the basis of a detailed interview with each PwD and his/her carer. RESULTS: PwD and carers showed the same level of increase in response times to salient compared to neutral words. In the PwD this effect was unrelated to the degree of awareness that they demonstrated regarding the condition. CONCLUSIONS: The emotional Stroop effect in response to dementia-related words in PwD indicates that preserved implicit awareness of the condition can be elicited even where there is reduced explicit awareness.

Awareness in early-stage Alzheimer's disease: relationship to outcome of cognitive rehabilitation.

Awareness of difficulties may have an important impact on functioning and response to intervention in early-stage Alzheimer's disease (AD). Clinical reports and retrospective studies suggest an association, but this has not previously been tested in a prospective study. Using a new measure of awareness, the Memory Awareness Rating Scale (MARS), which was designed to take account of methodological limitations identified in a review of previous studies, the present study explored the relationship between awareness of difficulties and outcome of a cognitive rehabilitation (CR) intervention in 12 participants with a diagnosis of early-stage Alzheimer's disease. The relationship between awareness and mood, behaviour and executive function was also assessed. The results provide the first demonstration in a prospective study that higher levels of awareness are related to better CR outcomes. Awareness was associated with depression and reported behaviour problems, but not with performance on tests of executive function. These results suggest that variations in level of awareness in early-stage AD are influenced by psychological factors, and that explanatory models need to take these factors into account. Awareness of difficulties may serve as a useful predictor of the likely effectiveness of CR, andthis may assist clinicians in selecting appropriate interventions for individuals with early-stage AD.

Relearning face-name associations in early Alzheimer's disease.

Preliminary evidence for the effectiveness of cognitive rehabilitation interventions based on errorless learning principles in early-stage Alzheimer's disease (AD) was provided by Clare et al. (1999, 2000, 2001). The present study extends these findings in a controlled trial. Twelve participants meeting criteria for probable AD, with Mini-Mental State Examination scores of 18 or above, were trained in face-name associations using an errorless learning paradigm. Training produced a significant group improvement in recall of trained, but not control, items. Gains were largely maintained 6 months later, in the absence of practice. There were differences in individual response to intervention. Results did not differ according to medication status, and the intervention had no adverse effects on self-reported well-being, but participants who were more aware of their memory difficulties achieved better outcomes.