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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)
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)
The influence of psychological, social and contextual factors on the expression and measurement of awareness in early-stage dementia: testing a biopsychosocial model
- Authors:
- CLARE Linda, et al
- Journal article citation:
- International Journal of Geriatric Psychiatry, 27(2), February 2012, pp.167-177.
- Publisher:
- Wiley
A reduction in awareness of cognitive impairment or behavioural change is frequently found in early-stage dementia. The aim of this study was to test 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. The study presents data from initial assessments of 101 people with early-stage dementia participating in the Memory Impairment and Dementia Awareness (MIDAS) Study. Awareness was assessed using parallel self-ratings and carer ratings in relation to memory, activities of daily living, and social functioning. The findings show that, in all 3 awareness domains, the self-ratings of the person with dementia were more positive than the carer ratings. Discrepancy scores were greatest for activities of daily living, moderate for memory, and lowest for social functioning. The findings demonstrate that psychological and social factors significantly influence scores on measures of awareness alongside illness-related and neuropsychological factors, supporting the relevance of a biopsychosocial approach to understanding the factors that influence unawareness of impairment in dementia. (Edited publisher abstract)
The experience of living with dementia in residential care: an interpretative phenomenolgical analysis
- Authors:
- CLARE Linda, et al
- Journal article citation:
- Gerontologist, 48(6), December 2008, pp.711-720.
- Publisher:
- Oxford University Press
The subjective psychological experience of people with moderate to severe dementia living in residential care is insufficiently understood. This study aimed to explore the subjective experience of life with dementia in residential care from the perspective of the person with dementia, and to understand the psychological impact of being in this situation. This was an exploratory qualitative study. Eighty individuals with dementia who were living in residential care homes in England and Wales engaged in unstructured conversations with a researcher. The transcripts of the resultant 304 conversations were subjected to interpretative phenomenological analysis in order to develop a thematic account. The experience of living with dementia in residential care was fundamentally one of experiencing difficult and distressing emotions relating to loss, isolation, uncertainty, fear, and a sense of worthlessness. Participants generally tried to cope by accepting and making the best of things and affirming their past sense of self and identity, but some also expressed frustration and anger. Implications: Participants were able to describe aspects of their situation and their emotional response to it, grounded in a strong retained sense of self and identity. The participants' experience emphasizes the importance of improving the living situation of elders with dementia in residential care settings.
‘I don't do like I used to do’: a grounded theory approach to conceptualising awareness in people with moderate to severe dementia living in long-term care
- Authors:
- CLARE Linda, et al
- Journal article citation:
- Social Science and Medicine, 66(11), June 2008, pp.2366-2377.
- Publisher:
- Elsevier
While awareness among people with mild to moderate dementia residing in the community has been extensively studied, little evidence has been presented regarding the extent to which people with moderate to severe dementia living in residential care show awareness of their own situation and functioning. The present study aimed to explore how differing degrees of awareness are manifested in the conversations and interactions of people with dementia living in residential care settings, and to identify theoretical and practical implications. Transcripts of 304 conversations with 80 individuals with dementia living in residential care homes in England and Wales were analysed using a grounded theory approach. All 80 participants demonstrated a degree of retained awareness, and there was considerable evidence of retained awareness throughout the conversations, expressed in relation to the three domains of self, relationship, and the environmental context. Two-thirds of participants also demonstrated at least one instance of unawareness, although demonstrations of retained awareness outweighed indications of unawareness. Unawareness was evident in relation to appraisal of functioning and the meaning ascribed to the situation. A grounded theory model of awareness in people with moderate to severe dementia who still communicate verbally proposes that demonstration of awareness involves a set of analytic and behavioural processes, a scope or timescale, and a focus. Awareness is demonstrated in relation to a given focus and scope through the involvement of cognitive processes of varying degrees of complexity, ranging from registering through appraising and interpreting to reflection. Unawareness may be demonstrated in relation to some elements of process, focus or scope, while other aspects remain unaffected. Understanding more about the capacity for retained awareness and the specific ways in which awareness can be compromised may assist care staff in responding effectively to residents' needs.
Awareness in dementia: A review of assessment methods and measures
- Authors:
- CLARE Linda, et al
- Journal article citation:
- Aging and Mental Health, 9(5), September 2005, pp.394-413.
- Publisher:
- Taylor and Francis
A comprehensive range of literature on awareness in dementia published in peer-reviewed journals during the last 15 years was reviewed with the aim of extracting details of the methods and measurement instruments adopted for the purposes of assessing awareness. Assessment approaches fell into five categories: clinician rating methods, questionnaire-based methods, performance-based methods, phenomenological methods, and multidimensional or combined methods. Ranges of objects of awareness assessment were identified both within and across domains. Strengths and limitations of methods in each category were identified. Reasons for the inconclusive findings from research using the methods described here were considered, and suggestions for future directions were made.
AWARE: exploring awareness in early stage dementia
- Authors:
- CLARE Linda, et al
- Journal article citation:
- Journal of Dementia Care, 12(2), March 2004, p.35.
- Publisher:
- Hawker
The authors explore the concept of 'awareness' in dementia. Also outlines the AWARE project, funded by the European Commission, which aims to share ideas about awareness in dementia and develop a plan for future research that includes the perspectives of people who are living with dementia.
Depression and anxiety in memory clinic attenders and their carers: implications for evaluating the effectiveness of cognitive rehabilitation interventions
- Authors:
- CLARE Linda, et al
- Journal article citation:
- International Journal of Geriatric Psychiatry, 17(10), October 2002, pp.962-967.
- Publisher:
- Wiley
The potential of cognitive rehabilitation (CR) for people who have a diagnosis of Alzheimer's disease (AD) is increasingly being recognised. It has been suggested, however, that interventions targeting memory functioning in AD have negative effects on the well-being of participants and carers in terms of mood and perceived strain. While some memory training studies do report an increase in self-report scores on scales assessing these variables, it is not clear whether the changes are attributable to the intervention. There is some overlap between CR and memory training, but CR is a much more individualised approach, and therefore CR intervention studies often adopt within-subjects or single case experimental designs, for which relevant comparison data are required.