Ilona Roth

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 Alzheimers 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.

Autistic Traits Below the Clinical Threshold: Re-examining the Broader Autism Phenotype in the 21st Century

Diagnosis, intervention and support for people with autism can be assisted by research into the aetiology of the condition. Twin and family studies indicate that autism spectrum conditions are highly heritable; genetic relatives of people with autism often show milder expression of traits characteristic for autism, referred to as the Broader Autism Phenotype (BAP). In the past decade, advances in the biological and behavioural sciences have facilitated a more thorough examination of the BAP from multiple levels of analysis. Here, the candidate phenotypic traits delineating the BAP are summarised, including key findings from neuroimaging studies examining the neural substrates of the BAP. We conclude by reviewing the value of further research into the BAP, with an emphasis on deriving heritable endophenotypes which will reliably index autism susceptibility and offer neurodevelopmental mechanisms that bridge the gap between genes and a clinical autism diagnosis.

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, and this may assist clinicians in selecting appropriate interventions for individuals with early-stage AD.

Assessing awareness in early-stage Alzheimer's disease: Development and piloting of the Memory Awareness Rating Scale

There are indications that awareness may have an important impact on functioning and response to rehabilitative interventions in early-stage Alzheimers disease (AD), yet studies have so far produced few clear findings, and a comprehensive explanatory model is needed together with a reliable assessment method. A theory-driven approach to assessing awareness in early-stage Alzheimers disease was used to develop the Memory Awareness Rating Scale (MARS), a measure that addresses key methodological limitations of the assessment methods adopted in existing studies. The MARS was piloted with 12 couples where one partner had a diagnosis of AD. This demonstrated that the MARS has satisfactory psychometric properties, and suggested some refinements to the scale that may improve its usefulness. Results obtained with the MARS allow further consideration of theoretical and methodological issues that arise in attempting to understand and assess awareness. The development of this rigorous method of assessing awareness of memory difficulties in early-stage AD provides a basis for further investigation of the relationship between awareness of memory difficulties and outcome of neuropsychological rehabilitation in early-stage AD.

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

Insufficient attention has been paid to the influence of psychological and social factors on discrepancy‐based measures of awareness.

Perceptions of change over time in early-stage Alzheimer's disease Implications for understanding awareness and coping style

Emerging models of subjective experience, awareness and coping in early-stage dementia may usefully be enhanced by incorporating a temporal perspective. As an initial step in this direction, we undertook a prospective one-year follow-up of participants with a diagnosis of early-stage Alzheimers disease whose accounts had contributed to the development of Clares phenomenological model of awareness incorporating the continuum model of coping in early-stage dementia. All 12 participants from the original study completed a follow-up interview one year later. Interpretative phenomenological analysis was used to identify emergent themes. All participants continued to demonstrate some awareness of difficulties with memory, but individuals varied in their evaluations of the extent and implications of these changes, with the majority tending towards more normalizing explanations. Many were nevertheless making practical adjustments to their activities, and the need to renegotiate relationships was a prominent issue. Subsequently, the data were examined for evidence of the themes identified in the original study, the initial model was reapplied, and changes in individual coping style over time were explored through case study analysis. The range of processes and coping styles observed across participants 12 months earlier was still apparent, with some indication of increased polarization between self-maintaining and self-adjusting styles of coping. A small number of participants showed significant changes in coping style, with changes occurring in both directions. The findings suggest that expression of awareness interacts with coping style, illustrating the need to consider both factors in combination in order to better understand individual expressions of awareness of change.

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 ones 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 Alzheimers 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.

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.

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.

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

BackgroundSelf-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.MethodsParticipants 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.ResultsCognitive 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.ConclusionsThis 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.