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 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. 469 1-13. ISSN 1471-2318

[img] PDF - Accepted Version
Restricted to SRO admin only

Download (439kB)
[img] PDF - Published Version
Available under License Creative Commons Attribution.

Download (919kB)


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.

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.

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.

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
Keywords: Alzheimer’s disease, Caregiver, Cognitive impairment, Dementia, Health, Longitudinal studies, Quality of life, Wellbeing, Cohort Studies, Dementia, Humans, Longitudinal Studies, Modems, Quality of Life, Surveys and Questionnaires
Schools and Departments: Brighton and Sussex Medical School > Neuroscience
Brighton and Sussex Medical School > Sussex Health Outcomes Research & Education in Cancer (SHORE-C)
SWORD Depositor: Mx Elements Account
Depositing User: Mx Elements Account
Date Deposited: 06 Oct 2022 08:27
Last Modified: 06 Oct 2022 08:30
URI: http://sro.sussex.ac.uk/id/eprint/108335

View download statistics for this item

📧 Request an update