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Mixed-Methods Study on Caregiver Strain, Quality of Life, and Perceived Health
BACKGROUND: Caring for someone with dementia is associated with negative and positive experiences. There is little evidence based on large datasets. OBJECTIVE: To present data around the experience of caring for someone with dementia, to identify support (emotional and practical) needs, and inform f...
Autores principales: | , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
IOS Press
2021
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8075381/ https://www.ncbi.nlm.nih.gov/pubmed/33579842 http://dx.doi.org/10.3233/JAD-201257 |
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author | Di Lorito, Claudio Bosco, Alessandro Godfrey, Maureen Dunlop, Marianne Lock, Juliette Pollock, Kristian Harwood, Rowan H. van der Wardt, Veronika |
author_facet | Di Lorito, Claudio Bosco, Alessandro Godfrey, Maureen Dunlop, Marianne Lock, Juliette Pollock, Kristian Harwood, Rowan H. van der Wardt, Veronika |
author_sort | Di Lorito, Claudio |
collection | PubMed |
description | BACKGROUND: Caring for someone with dementia is associated with negative and positive experiences. There is little evidence based on large datasets. OBJECTIVE: To present data around the experience of caring for someone with dementia, to identify support (emotional and practical) needs, and inform future service provision. METHODS: A mixed-methods study embedded in the Promoting Activity, Independence and Stability in Early Dementia (PrAISED) Randomized Controlled Trial. We administered questionnaires on strain, quality of life (QoL), and perceived health to 301 caregivers and assessment of cognitive performance, depression, anxiety, and disability in activities of daily living to 301 participants with dementia. Data were analyzed through descriptive and modelling statistics. A subsample of 20 patient-caregiver dyads were qualitatively interviewed. Data around caregivers’ experience of providing care were extrapolated and analyzed through inductive thematic analysis. RESULTS: There were significant negative associations between caregiver strain and QoL (p < 0.01) and between caregiver age and QoL (p < 0.01), and significant positive associations between caregiver strain and disability (p < 0.01), cognitive impairment (p < 0.01), depression (p < 0.05), and anxiety of the person with dementia (p < 0.05). Older caregivers reported a lack of support, reinforced by their reluctance to seek help. All caregivers reported contradictory emotions associated with caring and accumulation of strain over time. CONCLUSION: While there is recognition that it is essential to support caregivers, dedicated intervention programs, and support strategies to respond to the needs of older caregivers are still needed. |
format | Online Article Text |
id | pubmed-8075381 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2021 |
publisher | IOS Press |
record_format | MEDLINE/PubMed |
spelling | pubmed-80753812021-05-11 Mixed-Methods Study on Caregiver Strain, Quality of Life, and Perceived Health Di Lorito, Claudio Bosco, Alessandro Godfrey, Maureen Dunlop, Marianne Lock, Juliette Pollock, Kristian Harwood, Rowan H. van der Wardt, Veronika J Alzheimers Dis Research Article BACKGROUND: Caring for someone with dementia is associated with negative and positive experiences. There is little evidence based on large datasets. OBJECTIVE: To present data around the experience of caring for someone with dementia, to identify support (emotional and practical) needs, and inform future service provision. METHODS: A mixed-methods study embedded in the Promoting Activity, Independence and Stability in Early Dementia (PrAISED) Randomized Controlled Trial. We administered questionnaires on strain, quality of life (QoL), and perceived health to 301 caregivers and assessment of cognitive performance, depression, anxiety, and disability in activities of daily living to 301 participants with dementia. Data were analyzed through descriptive and modelling statistics. A subsample of 20 patient-caregiver dyads were qualitatively interviewed. Data around caregivers’ experience of providing care were extrapolated and analyzed through inductive thematic analysis. RESULTS: There were significant negative associations between caregiver strain and QoL (p < 0.01) and between caregiver age and QoL (p < 0.01), and significant positive associations between caregiver strain and disability (p < 0.01), cognitive impairment (p < 0.01), depression (p < 0.05), and anxiety of the person with dementia (p < 0.05). Older caregivers reported a lack of support, reinforced by their reluctance to seek help. All caregivers reported contradictory emotions associated with caring and accumulation of strain over time. CONCLUSION: While there is recognition that it is essential to support caregivers, dedicated intervention programs, and support strategies to respond to the needs of older caregivers are still needed. IOS Press 2021-03-23 /pmc/articles/PMC8075381/ /pubmed/33579842 http://dx.doi.org/10.3233/JAD-201257 Text en © 2021 – The authors. Published by IOS Press https://creativecommons.org/licenses/by-nc/4.0/This is an open access article distributed under the terms of the Creative Commons Attribution Non-Commercial (CC BY-NC 4.0) License (https://creativecommons.org/licenses/by-nc/4.0/) , which permits unrestricted non-commercial use, distribution, and reproduction in any medium, provided the original work is properly cited. |
spellingShingle | Research Article Di Lorito, Claudio Bosco, Alessandro Godfrey, Maureen Dunlop, Marianne Lock, Juliette Pollock, Kristian Harwood, Rowan H. van der Wardt, Veronika Mixed-Methods Study on Caregiver Strain, Quality of Life, and Perceived Health |
title | Mixed-Methods Study on Caregiver Strain, Quality of Life, and Perceived Health |
title_full | Mixed-Methods Study on Caregiver Strain, Quality of Life, and Perceived Health |
title_fullStr | Mixed-Methods Study on Caregiver Strain, Quality of Life, and Perceived Health |
title_full_unstemmed | Mixed-Methods Study on Caregiver Strain, Quality of Life, and Perceived Health |
title_short | Mixed-Methods Study on Caregiver Strain, Quality of Life, and Perceived Health |
title_sort | mixed-methods study on caregiver strain, quality of life, and perceived health |
topic | Research Article |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8075381/ https://www.ncbi.nlm.nih.gov/pubmed/33579842 http://dx.doi.org/10.3233/JAD-201257 |
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