Does awareness of condition help people with mild-to-moderate dementia to live well? Findings from the IDEAL programme
dc.contributor.author | Alexander, CM | |
dc.contributor.author | Martyr, A | |
dc.contributor.author | Gamble, LD | |
dc.contributor.author | Savage, SA | |
dc.contributor.author | Quinn, C | |
dc.contributor.author | Morris, RG | |
dc.contributor.author | Collins, R | |
dc.contributor.author | Clare, L | |
dc.date.accessioned | 2021-09-28T10:00:26Z | |
dc.date.issued | 2021-09-25 | |
dc.description.abstract | Background People living with dementia vary in awareness of their abilities. We explored awareness of the condition and diagnosis in people with mild-to-moderate dementia, and how this relates to quality of life, well-being, life satisfaction, and caregiver stress. Methods This study was a cross-sectional exploratory analysis of data from the IDEAL cohort, which recruited people with dementia living at home and available caregivers from 29 research sites in Great Britain. Our study included 917 people with mild-to-moderate dementia and 755 carers. Low and high awareness groups were derived from self-reported responses to a dementia representation measure. Logistic regression was used to explore predictors of awareness of condition and diagnosis using demographic, cognitive, functional and psychological measures, and the relationship with quality of life, well-being and life satisfaction (‘living well’), and caregiver stress. Results There were 83 people with low awareness of their condition. The remaining 834 people showed some awareness and 103 of these had high awareness of their condition and diagnosis. Psychosocial factors were stronger predictors of awareness than cognitive and functional ability. Those with higher awareness reported lower mood, and lower scores on indices of living well as well as lower optimism, self-efficacy and self-esteem. Low awareness was more likely in those aged 80y and above, and living in more socially deprived areas. No relationship was seen between caregiver stress and awareness. Conclusions Awareness of the condition and diagnosis varies in people with mild-to-moderate dementia and is relevant to the capability to live well. Awareness should be considered in person-centered clinical care. | en_GB |
dc.description.sponsorship | Alzheimer’s Society | en_GB |
dc.description.sponsorship | Economic and Social Research Council (ESRC) | en_GB |
dc.description.sponsorship | National Institute for Health Research (NIHR) | en_GB |
dc.identifier.citation | Vol. 21, article 511 | en_GB |
dc.identifier.doi | 10.1186/s12877-021-02468-4 | |
dc.identifier.grantnumber | AS-CP-17-001 | en_GB |
dc.identifier.grantnumber | ES/L001853/2 | en_GB |
dc.identifier.uri | http://hdl.handle.net/10871/127260 | |
dc.language.iso | en | en_GB |
dc.publisher | BMC | en_GB |
dc.relation.url | http://reshare.ukdataservice.ac.uk/854293/ | en_GB |
dc.rights | © The Author(s). 2021. Open Access. This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data. | en_GB |
dc.subject | Anosognosia | en_GB |
dc.subject | Insight | en_GB |
dc.subject | Diagnosis | en_GB |
dc.subject | Disclosure | en_GB |
dc.subject | Quality of life | en_GB |
dc.subject | Well-being | en_GB |
dc.subject | Life satisfaction | en_GB |
dc.subject | Caregiver stress | en_GB |
dc.title | Does awareness of condition help people with mild-to-moderate dementia to live well? Findings from the IDEAL programme | en_GB |
dc.type | Article | en_GB |
dc.date.available | 2021-09-28T10:00:26Z | |
exeter.article-number | 511 | en_GB |
dc.description | This is the final version. Available on open access from BMC via the DOI in this record | en_GB |
dc.description | Availability of data and materials: For the datasets supporting the conclusions of this study, 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: http://reshare.ukdataservice.ac.uk/854293/ | en_GB |
dc.identifier.eissn | 1471-2318 | |
dc.identifier.journal | BMC Geriatrics | en_GB |
dc.rights.uri | https://creativecommons.org/licenses/by/4.0/ | en_GB |
dcterms.dateAccepted | 2021-09-06 | |
rioxxterms.version | VoR | en_GB |
rioxxterms.licenseref.startdate | 2021-09-25 | |
rioxxterms.type | Journal Article/Review | en_GB |
refterms.dateFCD | 2021-09-28T09:58:15Z | |
refterms.versionFCD | VoR | |
refterms.dateFOA | 2021-09-28T10:00:41Z | |
refterms.panel | A | en_GB |
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Except where otherwise noted, this item's licence is described as © The Author(s). 2021. Open Access. This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.