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Supporting everyday activities for people with early stage AD: the benefits of cognitive rehabilitation
- Author:
- CLARE Linda
- Journal article citation:
- Journal of Dementia Care, 18(5), September 2010, pp.37-38.
- Publisher:
- Hawker
People with early-stage Alzheimer’s Disease may benefit from extra support with engaging in everyday activities. This article describes a cognitive rehabilitation intervention for people with early-stage Alzheimer’s Disease. The approach is called cognitive rehabilitation because it addresses difficulties resulting from impairments in memory and other cognitive functions. Individual goals are identified in discussion with a therapist. These are areas where the person with Alzheimer’s Disease would like to manage things better, or develop new skills or ways of coping. Once the goals are selected the therapist works together with the person to devise a plan for addressing the goal. This may involve compensatory or restorative approaches. This article briefly describes a randomised controlled trial comparing this approach with relaxation therapy and with no treatment. A total of 69 participants were randomly assigned to one of the three conditions and set goals, but only those allocated to the cognitive rehabilitation group actively worked with the therapist to achieve the goals. The results showed that the participants in the cognitive rehabilitation group improved performance in relation to their goals, while the other groups did not change. The article concludes that the extra support offered by the cognitive rehabilitation approach can help people stay engaged in everyday activities and manage their memory difficulties more effectively.
Awareness in people with severe dementia: review and integration
- Author:
- CLARE Linda
- Journal article citation:
- Aging and Mental Health, 14(1), January 2010, pp.20-32.
- Publisher:
- Taylor and Francis
Although awareness has been extensively researched in relation to people with dementia, studies have focussed mainly on people who have dementia of mild to moderate severity. Consequently, relatively little is known about awareness in people with severe dementia, and there is no clear conceptual framework to indicate how this should be understood or investigated. This review presents a conceptual framework for considering awareness in people with moderate to severe dementia which distinguishes fundamental awareness of sensory and perceptual stimuli and 3 levels of awareness involving more complex cognitive operations, termed 'on-line monitoring', 'evaluative judgement' and 'meta-representation', and provides an integration of the available evidence regarding each level. The findings indicate that sensory and perceptual awareness can be detected even in people with very severe or end-stage dementia, while some aspects of complex awareness may be retained into the severe stages. The article concludes that the environmental context and the nature of caregiving interactions influence the extent to which awareness is expressed. There may be scope for enhancing the expression of some aspects of awareness in people with moderate to severe dementia, but this should only be undertaken where it is likely to improve quality of life. Understanding more about awareness is an important element in the provision of high-quality care for people with moderate to severe dementia.
Neuropsychological rehabilitation and people with dementia
- Author:
- CLARE Linda
- Publisher:
- Psychology Press
- Publication year:
- 2008
- Pagination:
- 179p., bibliog.
- Place of publication:
- Hove
Rehabilitation provides a core concept around which to organize support, intervention and care for people with impairments in memory and other cognitive functions. This book introduces a conceptual framework and rationale for the application of a neuropsychological rehabilitation approach for people with dementia, helping them to manage, by-pass or overcome these problems and experience optimum well-being. Effective application requires an understanding of the ways in which people with dementia and their families cope and adjust, and of the neuropsychological profile and the remaining potential for learning and cognitive plasticity. A critical review of traditional forms of cognition-focused intervention for people with dementia points to the need for an individualized, goal-oriented rehabilitative approach. Methods and techniques of cognitive rehabilitation are described and the process of individual goal-setting is discussed in detail, showing how effective strategies may be linked to form a comprehensive approach to intervention. The application of a rehabilitation approach in real-life contexts is explored, demonstrating the role and value of neuropsychological rehabilitation within an holistic, psychotherapeutic framework of care and support.
Developing awareness about awareness in early-stage dementia: The role of psychosocial factors
- Author:
- CLARE Linda
- Journal article citation:
- Dementia: the International Journal of Social Research and Practice, 1(3), October 2002, pp.296-312.
- Publisher:
- Sage
Unawareness in dementia is often viewed as a 'symptom' that is wholly or primarily the product of biological factors. While neurological damage may be sufficient to produce unawareness in some disorders, it is argued that this is not generally the case in early-stage dementia. Instead, it is suggested that the apparent degree of awareness is an expression of adaptive psychological responses constructed in a social situation in the context of neurologically based cognitive impairment. Drawing on examples from detailed interviews with people who have dementia and their partners, the contribution of psychological and social factors to the expression of awareness is explored. It is further argued that, because evaluations of awareness are constructed in dialogue through the interpretative activity of the researcher or clinician, reflexivity is essential in considering awareness.
Unawareness in early dementia: symptom of disease or meaningful psychological response?
- Author:
- CLARE Linda
- Journal article citation:
- Journal of Dementia Care, 10(4), July 2002, pp.31-35.
- Publisher:
- Hawker
People in the early stages of dementia are often said to be 'unaware' or to 'lack insight'. This judgement is usually made without taking psychological factors into account. This article outlines a new approach that considers the perspective of the person and describes a study based on this approach.
Memory rehabilitation in early dementia
- Author:
- CLARE Linda
- Journal article citation:
- Journal of Dementia Care, 7(6), November 1999, pp.33-38.
- Publisher:
- Hawker
Reviews research on interventions designed to help with memory functioning in early dementia, outlining the conceptual basis and theoretical rationale for such interventions, and giving an overview of therapeutic approaches and evidence for their effectiveness. The author stresses that any approach must be applied in a way that takes account of the whole person and their emotional well-being.
Individual goal‐oriented cognitive rehabilitation to improve everyday functioning for people with early‐stage dementia: A multicentre randomised controlled trial (the GREAT trial)
- Authors:
- CLARE Linda, et al
- Journal article citation:
- International Journal of Geriatric Psychiatry, 34(5), 2019, pp.709-721.
- Publisher:
- Wiley
Objectives: To determine whether individual goal‐oriented cognitive rehabilitation (CR) improves everyday functioning for people with mild‐to‐moderate dementia. Design and methods: Parallel group multicentre single‐blind randomised controlled trial (RCT) comparing CR added to usual treatment (CR) with usual treatment alone (TAU) for people with an ICD‐10 diagnosis of Alzheimer, vascular or mixed dementia, and mild‐to‐moderate cognitive impairment (Mini‐Mental State Examination [MMSE] score ≥ 18), and with a family member willing to contribute. Participants allocated to CR received 10 weekly sessions over 3 months and four maintenance sessions over 6 months. Participants were followed up 3 and 9 months post randomisation by blinded researchers. The primary outcome was self‐reported goal attainment at 3 months. Secondary outcomes at 3 and 9 months included informant‐reported goal attainment, quality of life, mood, self‐efficacy, and cognition and study partner stress and quality of life. Results: We randomised (1:1) 475 people with dementia; 445 (CR = 281) were included in the intention to treat analysis at 3 months and 426 (CR = 208) at 9 months. At 3 months, there were statistically significant large positive effects for participant‐rated goal attainment (d = 0.97; 95% CI, 0.75‐1.19), corroborated by informant ratings (d = 1.11; 95% CI, 0.89‐1.34). These effects were maintained at 9 months for both participant (d = 0.94; 95% CI, 0.71‐1.17) and informant (d = 0.96; 95% CI, 0.73‐1.2) ratings. The observed gains related to goals directly targeted in the therapy. There were no significant differences in secondary outcomes. Conclusions: CR enables people with early‐stage dementia to improve their everyday functioning in relation to individual goals targeted in the therapy. (Edited publisher abstract)
Awareness of functional ability in people with early-stage dementia
- Authors:
- MARTYR Anthony, CLARE Linda
- Journal article citation:
- International Journal of Geriatric Psychiatry, 33(1), 2018, pp.31-38.
- Publisher:
- Wiley
Objectives: Assessment of functional ability in people with early-stage dementia (PwD) is an important area of study because it forms part of the diagnostic process and may help in monitoring disease progression. Most researchers and clinicians rely on informant ratings rather than observing actual functional performance or employing self-ratings. There has however been little research to verify whether informant ratings of functioning are accurate, and there has been even less research investigating the accuracy of self-ratings of functional ability in PwD. No study has used the performance-monitoring metacognitive approach to investigate awareness of functional ability. Methods: Thirty-seven people with early-stage dementia completed an objective functional assessment and provided self-ratings before and after completing each section of the objective test. Informants provided ratings of functioning and burden. Scores were converted to percentages to allow for direct comparison. Results: Objectively assessed functional ability significantly correlated with self-ratings and informant ratings. Self-ratings did not correlate with informant ratings. For converted scores, self-ratings were more similar than informant ratings to the objectively assessed mean scores. Burden was unrelated to functional assessments after correcting for multiple comparisons. Conclusions: Self-rated functional ability was more accurate than informant ratings when compared with objectively assessed ability, with informants tending to significantly underestimate the functional ability of PwD. The findings call into question the likelihood that informants will provide accurate ratings of functional ability and suggests that self-ratings may offer a more accurate estimate of functional ability. Self-ratings made by PwD should be more widely employed in clinical and research settings. (Edited publisher abstract)
Trajectories of quality of life in early-stage dementia: individual variations and predictors of change
- Authors:
- CLARE Linda, et al
- Journal article citation:
- International Journal of Geriatric Psychiatry, 29(6), 2014, pp.616-623.
- Publisher:
- Wiley
Background: Little evidence is available about how quality of life (QoL) changes as dementia progresses. Objectives: The authors 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 (Edited publisher abstract)
Self-concept in early stage dementia: profile, course, correlates, predictors and implications for quality of life
- Authors:
- CLARE Linda, et al
- Journal article citation:
- International Journal of Geriatric Psychiatry, 28(5), 2013, pp.494-503.
- Publisher:
- Wiley
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. 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. 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. 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. (Publisher abstract)