Differences in trajectories of quality of life according to type of dementia: 6-year longitudinal findings from the IDEAL programme
dc.contributor.author | Martyr, A | |
dc.contributor.author | Gamble, LD | |
dc.contributor.author | Hunt, A | |
dc.contributor.author | Quinn, C | |
dc.contributor.author | Morris, RG | |
dc.contributor.author | Henderson, C | |
dc.contributor.author | Allan, L | |
dc.contributor.author | Opdebeeck, C | |
dc.contributor.author | Charlwood, C | |
dc.contributor.author | Jones, RW | |
dc.contributor.author | Pentecost, C | |
dc.contributor.author | Kopelman, MD | |
dc.contributor.author | Thom, JM | |
dc.contributor.author | Matthews, FE | |
dc.contributor.author | Clare, L | |
dc.date.accessioned | 2024-06-25T15:14:01Z | |
dc.date.issued | 2024-06-24 | |
dc.date.updated | 2024-06-25T14:35:05Z | |
dc.description.abstract | Background People with different types of dementia may have distinct symptoms and experiences that affect their quality of life. This study investigated whether quality of life varied across types of dementia and over time. Methods The participants were 1555 people with mild-to-moderate dementia and 1327 carers from the IDEAL longitudinal cohort study, recruited from clinical services. As many as possible were followed for up to 6 years. Diagnoses included were Alzheimer’s disease, vascular dementia, mixed Alzheimer’s and vascular dementia, Parkinson’s disease dementia, dementia with Lewy bodies, and frontotemporal dementia. Self- and informant-rated versions of the Quality of Life in Alzheimer’s Disease scale were used. A joint model, incorporating a mixed effects model with random effects and a survival model to account for dropout, was used to examine whether quality of life varied by dementia type at the time of diagnosis and how trajectories changed over time. Results The strongest associations between dementia type and quality of life were seen around the time of diagnosis. For both self-ratings and informant ratings, people with Parkinson’s disease dementia or dementia with Lewy bodies had lower quality of life scores. Over time there was little change in self-rated scores across all dementia types (− 0.15 points per year). Informant-rated scores declined over time (− 1.63 points per year), with the greatest decline seen in ratings by informants for people with dementia with Lewy bodies (− 2.18 points per year). Conclusions Self-rated quality of life scores were relatively stable over time whilst informant ratings showed a steeper decline. People with Parkinson’s disease dementia or dementia with Lewy bodies report particularly low levels of quality of life, indicating the importance of greater attention to the needs of these groups. | en_GB |
dc.description.sponsorship | Economic and Social Research Council (ESRC) | en_GB |
dc.description.sponsorship | National Institute for Health and Care Research (NIHR) | en_GB |
dc.description.sponsorship | Alzheimer’s Society | en_GB |
dc.identifier.citation | Vol. 22(1), article 265 | en_GB |
dc.identifier.doi | https://doi.org/10.1186/s12916-024-03492-y | |
dc.identifier.grantnumber | ES/L001853/2 | en_GB |
dc.identifier.grantnumber | 348, AS-PR2-16-001 | en_GB |
dc.identifier.uri | http://hdl.handle.net/10871/136440 | |
dc.identifier | ORCID: 0000-0002-1702-8902 (Martyr, Anthony) | |
dc.identifier | ORCID: 0000-0002-8912-4901 (Allan, Louise) | |
dc.identifier | ORCID: 0000-0002-3522-8457 (Charlwood, Catherine) | |
dc.identifier | ORCID: 0000-0002-3740-5162 | 0000-0003-3989-5318 (Clare, Linda) | |
dc.language.iso | en | en_GB |
dc.publisher | BMC | en_GB |
dc.relation.url | https://reshare.ukdataservice.ac.uk/854293/ | en_GB |
dc.rights | © The Author(s) 2024. 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://creativecom mons.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 | Living well | en_GB |
dc.subject | Well-being | en_GB |
dc.subject | Satisfaction with life | en_GB |
dc.subject | Lewy body dementia | en_GB |
dc.subject | Carer | en_GB |
dc.subject | Caregiver | en_GB |
dc.subject | Longitudinal | en_GB |
dc.title | Differences in trajectories of quality of life according to type of dementia: 6-year longitudinal findings from the IDEAL programme | en_GB |
dc.type | Article | en_GB |
dc.date.available | 2024-06-25T15:14:01Z | |
exeter.article-number | 265 | |
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: IDEAL data were deposited with the UK data archive in April 2020. Details of how to access the data can be found here: https://reshare.ukdataservice.ac.uk/854293/ | en_GB |
dc.identifier.eissn | 1741-7015 | |
dc.identifier.journal | BMC Medicine | en_GB |
dc.rights.uri | https://creativecommons.org/licenses/by/4.0/ | en_GB |
dcterms.dateAccepted | 2024-06-17 | |
rioxxterms.version | VoR | en_GB |
rioxxterms.licenseref.startdate | 2024-06-24 | |
rioxxterms.type | Journal Article/Review | en_GB |
refterms.dateFCD | 2024-06-25T15:08:09Z | |
refterms.versionFCD | VoR | |
refterms.dateFOA | 2024-06-25T15:14:37Z | |
refterms.panel | A | en_GB |
refterms.dateFirstOnline | 2024-06-24 | |
exeter.rights-retention-statement | Yes |
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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://creativecom mons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data