Discontinuity in the subjective experience of self among people with mild-to-moderate dementia is associated with poorer psychological health: findings from the IDEAL cohort

This is the final version. Available from the publisher via the DOI in this record.IDEAL data were deposited with the UK data archive in April 2020 and will be available for access from April 2023. Details of how the data can be accessed after that date can be found here: http://reshare.ukdataservice.ac.uk/854293/.BACKGROUND: The onset and progression of dementia can result in changes in the subjective experience of self, impacting on psychological health. OBJECTIVE: We aimed to explore the extent to which people with mild-to-moderate dementia experience discontinuity in the subjective experience of self, and the factors associated with this experience for people with dementia and their family caregivers. METHODS: We used data from the baseline assessment of the IDEAL cohort. Discontinuity in the subjective experience of self was assessed by asking participants about their agreement with the statement 'I feel I am the same person that I have always been'. Participants were divided into those who did and did not experience discontinuity, and the two groups were compared in terms of demographic and disease-related characteristics, psychological well-being, measures of 'living well', and caregiver stress. RESULTS: Responses to the continuity question were available for 1,465 participants with dementia, of whom 312 (21%) reported experiencing discontinuity. The discontinuity group experienced significantly poorer psychological well-being and had significantly lower scores on measures of 'living well'. There was no clear association with demographic or disease-related characteristics, but some indication of increased caregiver stress. CONCLUSION: A significant proportion of people with mild-to-moderate dementia describe experiencing discontinuity in the subjective sense of self, and this is associated with poorer psychological health and reduced ability to 'live well' with the condition. Sensitively asking individuals with dementia about the subjective experience of self may offer a simple means of identifying individuals who are at increased risk of poor well-being.Economic and Social Research Council (ESRC)Alzheimer's Societ

Measuring awareness in people with dementia: protocol for a scoping review

This is the final version. Available from the publisher via the DOI in this record.Background: People with dementia (PwD) vary in the degree of awareness they show about their situation, both generally concerning the diagnosis and more specifically around certain aspects or objects of awareness such as awareness of memory impairment, altered daily activities or social functioning. The extent of awareness or lack of awareness has consequences for well-being of PwD and carers, impacting on rates of hospital admission, institutionalization, mood, adjustment to diagnosis, outcomes from intervention and carer burden. An accurate estimation of a person’s awareness could therefore be useful in a clinical setting to support PwD and their carers in making appropriate choices for health and care decisions, and could facilitate safe management by health care professionals, e.g. in an acute care setting. There is a range of different approaches to measuring awareness reported in the dementia research literature, with varying estimates of the frequency of lack of awareness, reflecting different methodologies and populations. The majority of the methods have been developed for research purposes and may not be suitable for clinical use. There are no recent scoping or systematic reviews of the available methods. Method: We will conduct a scoping review of published studies that have assessed awareness in people with dementia of all types, and all degrees of severity. The systematic search will include the electronic databases PubMed, Embase, PsycInfo, CINAHL, Web of Science and Cochrane Library, using search terms for dementia (“dement*” or “Alzheimer*” or “Pick’s disease”) and “awareness”, “unawareness”, “anosognosia”, “insight”, “denial”, “metacognit*” or “discrepanc*” identified from pilot searches. Findings will be mapped and described according to the method used, the setting and diagnosis and the object of awareness studied if specified. Validated measures will be identified. Discussion: This scoping review will provide an overview of the methods used to measure awareness in people with dementia, allowing comparison of the methods along with identification of validated measures. The methods or components will be appraised for potential clinical use, and gaps in research will be highlighted.Alzheimer's Societ

Cognitive rehabilitation for people with mild to moderate dementia (Protocol)

This is the final version. Available from the publisher via the DOI in this record.This is a protocol for a Cochrane Review (Intervention). The objectives are as follows: To evaluate the effects of cognitive rehabilitation on everyday functioning and other outcomes for people with mild to moderate dementia, and on outcomes for caregivers To identify and explore factors that may be associated with the efficacy of cognitive rehabilitation.National Institute for Health Research (NIHR

Cognitive training for people with mild to moderate dementia (protocol)

This is the final version of the article. Available from Cochrane Collaboration / Wiley via the DOI in this record.The review version is in ORE at: http://hdl.handle.net/10871/36870This is a protocol for a Cochrane Review (Intervention). The objectives are as follows: To evaluate the effects of cognitive training on cognitive and non-cognitive outcomes for people with mild to moderate dementia and their caregivers. To compare the effects of cognitive training with those of other non-pharmacological interventions, including cognitive stimulation or rehabilitation. To identify and explore factors related to intervention and trial design that may be associated with the efficacy of cognitive training.Internal sources • Cochrane Incentive Award, UK. External sources • NIHR, UK. This protocol was supported by the National Institute for Health Research (NIHR), via Cochrane Incentive funding Cochrane to the Cochrane Dementia and Cognitive Improvement group. The views and opinions expressed therein are those of the authors and do not necessarily reflect those of the Systematic Reviews Programme, NIHR, National Health Service or the Department of Health • National Health and Medical Research Council of Australia, Australi

Cognitive training for people with mild to moderate dementia (review)

This is the final version. Available from Cochrane Collaboration / Wiley via the DOI in this recordThe protocol version is in ORE at: http://hdl.handle.net/10871/33809Background Cognitive impairment, a defining feature of dementia, plays an important role in the compromised functional independence that characterises the condition. Cognitive training (CT) is an approach that uses guided practice on structured tasks with the direct aim of improving or maintaining cognitive abilities. Objectives To assess effects of CT on cognitive and non-cognitive outcomes for people with mild to moderate dementia and their caregivers. To compare effects of CT with those of other non-pharmacological interventions, including cognitive stimulation or rehabilitation, for people with mild to moderate dementia and their caregivers. To identify and explore factors related to intervention and trial design that may be associated with the efficacy of CT for people with mild to moderate dementia and their caregivers. Search methods We searched ALOIS, the Cochrane Dementia and Cognitive ImprovementGroup Specialised Register, on 5 July 2018. ALOIS contains records of clinical trials identified through monthly searches of several major healthcare databases and numerous trial registries and grey literature sources. In addition to this, we searched MEDLINE, Embase, PsycINFO, CINAHL, LILACS, Web of Science Core Collection, ClinicalTrials.gov, and the World Health Organization's trials portal, ICTRP, to ensure that searches were comprehensive and up-to-date. Selection criteria We included randomised controlled trials (RCTs) that described interventions for peoplewithmild tomoderate dementia and compared CT versus a control or alternative intervention. Data collection and analysis We extracted relevant data from published manuscripts and through contact with trial authors if required.We assessed risk of bias using the Cochrane 'Risk of bias' tool.We divided comparison conditions into active or passive control conditions and alternative treatments. We used a large number of measures and data to evaluate 19 outcomes at end of treatment, as well as 16 outcomes at follow-up in the medium term; we pooled this information in meta-analyses. We calculated pooled estimates of treatment effect using a random-effects model, and we estimated statistical heterogeneity using a standard Chi statistic. We graded the evidence using GradePro. Main results The 33 included trials were published between 1988 and 2018 and were conducted in 12 countries; most were unregistered, parallelgroup, single-site RCTs, with samples ranging from 12 to 653 participants. Interventions were between two and 104 weeks long. We classified most experimental interventions as 'straight CT', but we classified some as 'augmented CT', and about two-thirds as multi-domain interventions. Researchers investigated 18 passive and 13 active control conditions, along with 15 alternative treatment conditions, including occupational therapy, mindfulness, reminiscence therapy, and others. The methodological quality of studies varied, but we rated nearly all studies as having high or unclear risk of selection bias due to lack of allocation concealment, and high or unclear risk of performance bias due to lack of blinding of participants and personnel. We used data from 32 studies in the meta-analysis of at least one outcome. Relative to a control condition, we found moderate-quality evidence showing a small to moderate effect of CT on our first primary outcome, composite measure of global cognition at end of treatment (standardised mean difference (SMD) 0.42, 95% confidence interval (CI) 0.23 to 0.62), and high-quality evidence showing a moderate effect on the secondary outcome of verbal semantic fluency (SMD 0.52, 95% CI 0.23 to 0.81) at end of treatment, with these gains retained in the medium term (3 to 12 months post treatment). In relation to many other outcomes, including our second primary outcome of clinical disease severity in the medium term, the quality of evidence was very low, so we were unable to determine whether CT was associated with any meaningful gains. When compared with an alternative treatment, we found that CT may have little to no effect on our first primary outcome of global cognition at end of treatment (SMD 0.21, 95% CI-0.23 to 0.64), but the quality of evidence was low. No evidence was available to assess our second primary outcome of clinical disease severity in the medium term.We found moderate-quality evidence showing that CT was associated with improved mood of the caregiver at end of treatment, but this was based on a single trial. The quality of evidence in relation to many other outcomes at end of treatment and in the medium term was too low for us to determine whether CT was associated with any gains, but we are moderately confident that CT did not lead to any gains in mood, behavioural and psychological symptoms, or capacity to perform activities of daily living. Authors' conclusions Relative to a control intervention, but not to a variety of alternative treatments, CT is probably associated with small to moderate positive effects on global cognition and verbal semantic fluency at end of treatment, and these benefits appear to be maintained in the medium term. Our certainty in relation to many of these findings is low or very low. Future studies should take stronger measures to mitigate well-established risks of bias, and should provide long-term follow-up to improve our understanding of the extent to which observed gains are retained. Future trials should also focus on direct comparison of CT versus alternative treatments rather than passive or active control conditions.National Institute for Health Research (NIHR)National Health and Medical Research Council of Australi

Measuring Awareness in People With Dementia: Results of a Systematic Scoping Review

This is the final version. Available on open access from SAGE Publications via the DOI in this recordBackground: Awareness of the diagnosis or related changes in functioning varies in people with dementia (PwD), with implications for the well-being of PwD and their carers. Measuring awareness in a clinical setting could facilitate tailored support and optimize involvement in personal health and care decisions. This scoping review aimed to identify validated methods of assessing awareness in dementia and appraise their clinical utility. Method: A systematic search was conducted of English-language publications that measured awareness in PwD, in 6 electronic databases. Search terms included dement*, Alzheimer*, Pick disease, and awareness, unawareness, anosognosia, insight, denial, metacognit*, or discrepanc*. Results: We screened 30,634 articles, finding 345 articles that met our inclusion criteria. We identified 76 measures, most commonly using a discrepancy questionnaire comparing evaluations of function by PwD and an informant. There were 30 awareness measures developed and validated for use in dementia populations but few designed for general clinical use. Conclusions: Although we found a range of clinical indications for measuring awareness, there were few studies investigating clinical applications and few tools designed for clinical purposes. Further investigation and development of a person-centered tool could facilitate health and care choices in mild-to-moderate dementia.Alzheimer’s Societ

Healthcare Awareness Profile Interview: Development of a new evidence-based brief clinical tool to assess awareness in people with dementia

This is the final version. Available from Routledge via the DOI in this record. Data availability statement: Requests for access to the data should be made to the first author at REACH: the Centre for Research in Ageing and Cognitive Health. The current version of the Healthcare Awareness Profile Interview is awaiting validation and is included in the first author’s PhD thesis. Details are available on request.People with dementia vary in awareness of difficulties. Evaluating awareness could facilitate personalized care. However, current research measures are unsuitable for practical clinical application. We aimed to develop a brief multidimensional awareness interview for clinical use. Informed by available evidence about awareness of dementia, items suitable for both in-person and remote administration were modified from validated measures or developed for clinical application. The interview was administered via telephone or videoconference to 31 community-dwelling people with mild-to-moderate dementia. An informant completed a corresponding questionnaire. A multidimensional profile of awareness was created using self-report of symptoms, and discrepancies between self-rating and either informant rating or objective memory task performance. Feedback from participants and informants and discussions with clinical advisory and patient and public involvement groups helped finalize the interview. Remote administration was straightforward taking on average under 11 min. Awareness profiles showed a spectrum of awareness across domains. Feedback indicated that the items were acceptable and understandable. Certain aspects could be mildly upsetting where current difficulties were highlighted. Subject to further validation, the Healthcare Awareness Profile Interview (HAPI) shows potential as an evidence-based brief clinical tool for assessing awareness in people with mild-to-moderate dementia.National Institute for Health ResearchAlzheimer’s Societ

Dyadic influences on awareness of condition in people with dementia: findings from the IDEAL cohort

Copyright \ua9 2023 Alexander, Martyr, Gamble, Quinn, Pentecost, Morris, Clare and on behalf of the IDEAL study team.Introduction: The discrepancy between caregiver-ratings and self-ratings of abilities is commonly used to assess awareness in people with dementia. We investigated the contribution of caregiver and dyadic characteristics to the difference in perspective between caregiver-informants and people with dementia about difficulties experienced, when considering awareness of condition. Methods: We conducted exploratory cross-sectional analyses using data from the IDEAL cohort. Participants were 1,038 community-dwelling people with mild-to-moderate dementia, and coresident spouse/partner caregivers. The Representations and Adjustment to Dementia Index (RADIX) checklist reporting difficulties commonly experienced in dementia was completed by 960 caregiver-informants and 989 people with dementia. Difference in scores was calculated for 916 dyads. Demographic information, cognition, informant-rated functional ability and neuropsychiatric symptoms were recorded for the person with dementia. Self-reported data were collected on mood, comorbidity, religion, importance of religion, relationship quality, and caregiver stress. Results: For most dyads, caregivers reported more RADIX difficulties than people with dementia. Caregiver RADIX ratings were more closely associated with informant-rated functional ability and neuropsychiatric symptoms than with cognition. More RADIX difficulties and higher stress were reported by female caregivers. Greater RADIX difference was associated with more caregiver stress, and older age but less depression in people with dementia. Conclusion: Few dyadic characteristics were important, but caregiver stress was higher where caregivers reported more RADIX difficulties and/or the difference in perspective was greater, whereas partners with dementia reported better mood. In addition to offering information about awareness of condition, the caregiver rating and difference in perspectives could indicate where more support is needed

Changes in awareness of condition in people with mild‐to‐moderate dementia: Longitudinal findings from the IDEAL cohort

This is the final version. Available on open access rom Wiley via the DOI in this recordData availability statement: IDEAL data were deposited with the UK data archive in April 2020 and will be available to access from April 2023. Details of how the data can be accessed after that date can be found here: https://reshare.ukdataservice.ac.uk/854293/. This study reports data from v5 of the IDEAL datasets.Objectives Awareness of difficulties shown by people with dementia is known to vary, but few studies have explored changes in awareness over time. Investigating this could further the understanding of surrounding concepts and reasons for impaired awareness. Recognising emerging or diminishing awareness could facilitate discussions about diagnosis and appropriate post-diagnostic support. Methods Using longitudinal data from the Improving the experience of Dementia and Enhancing Active Life (IDEAL) cohort, awareness in community-dwelling people with mild-to-moderate dementia was assessed at three timepoints over 2 years. A validated checklist was used to evaluate awareness of difficulties associated with dementia. We examined changes in awareness for people with low awareness at baseline, and used case-matching to describe differences in characteristics between people who gained awareness, and those who continued with low awareness. Results At baseline, 83 people from a sample of 917 showed low awareness. The majority of those remaining in the study at later timepoints had gained awareness, some as late as four or more years after diagnosis. Case-matched comparisons revealed few distinguishing characteristics: cases with stable low awareness had similar or better cognitive and functional ability than those who gained and retained awareness at 12 and 24 months, but may have had more co-morbidities. Conclusions Self-reported awareness of difficulties can change and may increase over time in people with mild-to-moderate dementia. There may be individual reasons for ongoing low awareness, not explained by cognitive or functional ability. This challenges the view that a single record of low awareness represents a fixed disease-related symptom, and highlights the complex, individual and dynamic nature of awareness.Alzheimer's SocietyEconomic and Social Research Council (ESRC)National Institute for Health Research (NIHR

Associations of awareness of age-related change with emotional and physical well-being: a systematic review and meta-analysis

This is the final version. Available on open access from OUP via the DOI in this recordBACKGROUND AND OBJECTIVES: This systematic review aimed to synthesize and quantify the associations of awareness of age-related change (AARC) with emotional well-being, physical well-being, and cognitive functioning. RESEARCH DESIGN AND METHODS: We conducted a systematic review with a correlational random effects meta-analysis. We included quantitative studies, published from January 1, 2009 to October 3, 2018, exploring associations between AARC and one or more of the following outcomes: emotional well-being, physical well-being, and cognitive functioning. We assessed heterogeneity (I2) and publication bias. RESULTS: We included 12 studies in the review, 9 exploring the association between AARC and emotional well-being and 11 exploring the association between AARC and physical well-being. No study explored the association between AARC and cognitive functioning. Six articles were included in the meta-analysis. We found a moderate association between a higher level of AARC gains and better emotional well-being (r = .33; 95% CI 0.18, 0.47; p <.001; I2 = 76.01) and between a higher level of AARC losses and poorer emotional (r = -.31; 95% CI -0.38, -0.24; p < .001; I2 = 0.00) and physical well-being (r = -.38; 95% CI -0.51, -0.24; p < .001; I2 = 83.48). We found a negligible association between AARC gains and physical well-being (r = .08; 95% CI 0.02, 0.14; p < .122; I2 = 0.00). Studies were of medium to high methodological quality. DISCUSSION AND IMPLICATIONS: There is some indication that AARC gains and losses can play a role in emotional well-being and that AARC losses are associated with physical well-being. However, the number of included studies is limited and there was some indication of heterogeneity. PROSPERO REGISTRATION: CRD42018111472.University of Exeter College of Life and Environmental Sciences (School of Psychology)University of Exeter College of Medicine and Healt