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Factors associated with change over time in quality of life of people with dementia: longitudinal analyses from the MODEM cohort study

BACKGROUND: Research to date offers mixed evidence about the relationship between quality of life and severity of cognitive impairment in people with dementia. We aimed to investigate longitudinal changes in patient- and proxy-rated health-related quality of life (HRQL) by severity of dementia and e...

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Autores principales: King, Derek, Farina, Nicolas, Burgon, Clare, Feeney, Yvonne, Berwald, Sharne, Bustard, Elizabeth, Gallaher, Laura, Habibi, Ruth, Wittenberg, Raphael, Comas-Herrera, Adelina, Knapp, Martin, Banerjee, Sube
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9158343/
https://www.ncbi.nlm.nih.gov/pubmed/35641909
http://dx.doi.org/10.1186/s12877-022-03142-z
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author King, Derek
Farina, Nicolas
Burgon, Clare
Feeney, Yvonne
Berwald, Sharne
Bustard, Elizabeth
Gallaher, Laura
Habibi, Ruth
Wittenberg, Raphael
Comas-Herrera, Adelina
Knapp, Martin
Banerjee, Sube
author_facet King, Derek
Farina, Nicolas
Burgon, Clare
Feeney, Yvonne
Berwald, Sharne
Bustard, Elizabeth
Gallaher, Laura
Habibi, Ruth
Wittenberg, Raphael
Comas-Herrera, Adelina
Knapp, Martin
Banerjee, Sube
author_sort King, Derek
collection PubMed
description BACKGROUND: Research to date offers mixed evidence about the relationship between quality of life and severity of cognitive impairment in people with dementia. We aimed to investigate longitudinal changes in patient- and proxy-rated health-related quality of life (HRQL) by severity of dementia and explore factors associated with changes in HRQL over a one-year period. We used data from the MODEM longitudinal cohort study which recruited dyads of persons with clinically diagnosed dementia and their principal carer and interviewed them face-to-face at baseline and again 1 year later. METHODS: Quota sampling was used to generate balanced numbers (target n = 100 for each severity level) of people with mild cognitive impairment (20+ on the standardised Mini-Mental State Examination (sMMSE)), moderate cognitive impairment (score 10 to 19), and severe cognitive impairment (score 0 to 9). Persons with dementia without an identifiable family carer or other informant (e.g., a formal/professional/paid carer) were excluded from the study. Participants answered a series of questions measuring their HRQL: DEMQOL, DEMQOL-proxy, EQ-5D-3 L, EQ-5D-3L proxy. Multiple regression models were built to understand the effects of baseline demographics and dementia symptoms (cognitive impairment, neuropsychiatric symptoms) on change in HRQL over 1 year. RESULTS: Two hundred and forty-three dyads of people with clinically diagnosed dementia and carers completed baseline and follow-up interviews. Most measures of HRQL remaining relatively stable between time-points, but one index of HRQL, EQ-5D proxy, significantly declined. Depending on the HRQL measure, different factors were associated with change in HRQL. The only factor consistently associated with decline in HRQL (when compared to improvement) was having a diagnosis of a non-Alzheimer’s dementia. CONCLUSIONS: Deterioration in HRQL is not an inevitable part of the dementia journey. However, people with non-Alzheimer’s dementias may be more susceptible to HRQL decline. This may indicate that those with non-Alzheimer’s dementia may benefit from specific support focussed on maintaining their quality of life.
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spelling pubmed-91583432022-06-02 Factors associated with change over time in quality of life of people with dementia: longitudinal analyses from the MODEM cohort study King, Derek Farina, Nicolas Burgon, Clare Feeney, Yvonne Berwald, Sharne Bustard, Elizabeth Gallaher, Laura Habibi, Ruth Wittenberg, Raphael Comas-Herrera, Adelina Knapp, Martin Banerjee, Sube BMC Geriatr Research BACKGROUND: Research to date offers mixed evidence about the relationship between quality of life and severity of cognitive impairment in people with dementia. We aimed to investigate longitudinal changes in patient- and proxy-rated health-related quality of life (HRQL) by severity of dementia and explore factors associated with changes in HRQL over a one-year period. We used data from the MODEM longitudinal cohort study which recruited dyads of persons with clinically diagnosed dementia and their principal carer and interviewed them face-to-face at baseline and again 1 year later. METHODS: Quota sampling was used to generate balanced numbers (target n = 100 for each severity level) of people with mild cognitive impairment (20+ on the standardised Mini-Mental State Examination (sMMSE)), moderate cognitive impairment (score 10 to 19), and severe cognitive impairment (score 0 to 9). Persons with dementia without an identifiable family carer or other informant (e.g., a formal/professional/paid carer) were excluded from the study. Participants answered a series of questions measuring their HRQL: DEMQOL, DEMQOL-proxy, EQ-5D-3 L, EQ-5D-3L proxy. Multiple regression models were built to understand the effects of baseline demographics and dementia symptoms (cognitive impairment, neuropsychiatric symptoms) on change in HRQL over 1 year. RESULTS: Two hundred and forty-three dyads of people with clinically diagnosed dementia and carers completed baseline and follow-up interviews. Most measures of HRQL remaining relatively stable between time-points, but one index of HRQL, EQ-5D proxy, significantly declined. Depending on the HRQL measure, different factors were associated with change in HRQL. The only factor consistently associated with decline in HRQL (when compared to improvement) was having a diagnosis of a non-Alzheimer’s dementia. CONCLUSIONS: Deterioration in HRQL is not an inevitable part of the dementia journey. However, people with non-Alzheimer’s dementias may be more susceptible to HRQL decline. This may indicate that those with non-Alzheimer’s dementia may benefit from specific support focussed on maintaining their quality of life. BioMed Central 2022-05-31 /pmc/articles/PMC9158343/ /pubmed/35641909 http://dx.doi.org/10.1186/s12877-022-03142-z Text en © The Author(s) 2022 https://creativecommons.org/licenses/by/4.0/Open AccessThis 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/ (https://creativecommons.org/licenses/by/4.0/) . The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/ (https://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.
spellingShingle Research
King, Derek
Farina, Nicolas
Burgon, Clare
Feeney, Yvonne
Berwald, Sharne
Bustard, Elizabeth
Gallaher, Laura
Habibi, Ruth
Wittenberg, Raphael
Comas-Herrera, Adelina
Knapp, Martin
Banerjee, Sube
Factors associated with change over time in quality of life of people with dementia: longitudinal analyses from the MODEM cohort study
title Factors associated with change over time in quality of life of people with dementia: longitudinal analyses from the MODEM cohort study
title_full Factors associated with change over time in quality of life of people with dementia: longitudinal analyses from the MODEM cohort study
title_fullStr Factors associated with change over time in quality of life of people with dementia: longitudinal analyses from the MODEM cohort study
title_full_unstemmed Factors associated with change over time in quality of life of people with dementia: longitudinal analyses from the MODEM cohort study
title_short Factors associated with change over time in quality of life of people with dementia: longitudinal analyses from the MODEM cohort study
title_sort factors associated with change over time in quality of life of people with dementia: longitudinal analyses from the modem cohort study
topic Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9158343/
https://www.ncbi.nlm.nih.gov/pubmed/35641909
http://dx.doi.org/10.1186/s12877-022-03142-z
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