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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

King, Derek, Farina, Nicolas, Burgon, Clare, Feeney, Yvonne, Berwald, Sharne, Bustard, Elizabeth, Gallaher, Laura, Habibi, Ruth, Wittenberg, Raphael ORCID: 0000-0003-3096-2721, Comas-Herrera, Adelina ORCID: 0000-0002-9860-9062, Knapp, Martin ORCID: 0000-0003-1427-0215 and Banerjee, Sube (2022) Factors associated with change over time in quality of life of people with dementia: longitudinal analyses from the MODEM cohort study. BMC Geriatrics, 22 (1). ISSN 1471-2318

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Identification Number: 10.1186/s12877-022-03142-z


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.

Item Type: Article
Official URL:
Additional Information: © 2022 The Authors
Divisions: Personal Social Services Research Unit
Health Policy
Subjects: H Social Sciences > HV Social pathology. Social and public welfare. Criminology
R Medicine > RA Public aspects of medicine
Date Deposited: 16 Mar 2022 14:48
Last Modified: 13 Jul 2022 07:57

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