Health-related quality-of-life instruments for Alzheimer's disease and mixed dementia

Perales, Jaime; Cosco, Theodore D.; Stephan, Blossom C M; Haro, Josep María; Brayne, Carol

doi:10.1017/s1041610212002293

Cited by 55 publications

(69 citation statements)

References 81 publications

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“…The present study confirms that QOL should be approached and measured as a multidimensional construct and not as a single construct [8]. The study also shows that it is possible to detect which people are at risk for a lower QOL across different QOL domains.…”

Section: Discussionsupporting

confidence: 82%

“…Different observational methods are available and validated to measure QOL in persons with moderate to severe dementia in LTCFs [7,50,51,52,53], and some have good psychometric properties [8,9]. These observational instruments employ different domains of QOL that are important for persons with dementia.…”

Section: Discussionmentioning

confidence: 99%

“…Therefore, the definitions of QOL in studies measuring QOL in dementia generally use several dimensions, which reflects that QOL in dementia is a multidimensional concept. Depending on their theoretical background, these different domains can include items related to physical and psychological wellbeing, social interaction, and positive/negative affect [6,7,8,9]. …”

Section: Introductionmentioning

confidence: 99%

See 2 more Smart Citations

Characteristics Associated with Quality of Life in Long-Term Care Residents with Dementia: A Cross-Sectional Study

Klapwijk

Caljouw

Pieper

et al. 2016

Dement Geriatr Cogn Disord

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Background: To determine which characteristics are associated with quality of life (QOL) in residents with moderate to very severe dementia in long-term care facilities (LTCFs). Material and Methods: This was a cross-sectional analysis of a cluster randomized controlled study in 12 Dutch LTCFs that enrolled 288 residents, with moderate to severe dementia assessed with the Reisberg Global Deterioration Scale (Reisberg GDS) and QOL with the QUALIDEM. Characteristics that were hypothesized to be associated with the six domains of QOL (applicable to very severe dementia) included demographic variables, activities of daily living (Katz ADL), cognitive performance (Cognitive Performance Scale; CPS), pain (Pain Assessment Checklist for Seniors with Limited Ability to Communicate; PACSLAC-D), neuropsychiatric symptoms (Neuropsychiatric Inventory-Nursing Home Version; NPI-NH) and comorbidities. Results: Multivariate logistic regression modelling showed associations with age in the domain Social isolation [odds ratio, OR, 0.95 (95% confidence interval, CI, 0.91-0.99)], ADL level in the domain Positive affect [OR 0.89 (95% CI 0.83-0.95)] and the domain Social relations [OR 0.87 (95% CI 0.81-0.93)], severity of dementia in the domain Social relations [OR 0.28 (95% CI 0.12-0.62)] and in the domain Social isolation [OR 2.10 (95% CI 1.17-3.78)], psychiatric disorders in the domain Positive affect [OR 0.39 (95% CI 0.17-0.87)] and pulmonary diseases in the domain Negative affect [OR 0.14 (95% CI 0.03-0.61)] of the QUALIDEM. Neuropsychiatric symptoms were independently associated with all six domains of the QUALIDEM [OR 0.93 (95% CI 0.90-0.96) to OR 0.97 (95% CI 0.95-0.99)]. Pain was associated with the domains Care relationship [OR 0.92 (95% CI 0.84-1.00)] and Negative affect [OR 0.92 (95% CI 0.85-1.00)]. Conclusion: QOL in dementia is independently associated with age, ADL, dementia severity, pain, psychiatric disorders, pulmonary diseases and neuropsychiatric symptoms. It is possible to detect persons with dementia at risk for a lower QOL. This information is important for developing personalized interventions to improve QOL in persons with dementia in LTCFs.

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Section: Discussionsupporting

confidence: 82%

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Characteristics Associated with Quality of Life in Long-Term Care Residents with Dementia: A Cross-Sectional Study

Klapwijk

Caljouw

Pieper

et al. 2016

Dement Geriatr Cogn Disord

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“…It has been argued that subscale scores should be calculated because HRQL by definition is a multidimensional concept and respective domain scores might help clarify treatment impact [5, 83]. However, the current study suggests that after controlling for general HRQL, subscales in DEMQOL and DEMQOL-Proxy explain little more and have poor score reliability, and therefore should not be used.…”

Section: Discussionmentioning

confidence: 71%

“…In a recent systematic review that compared psychometric properties of HRQL measures for Alzheimer’s disease and mixed dementia, the authors found 15 dementia-specific HRQL measures developed over the last 20 years [5]. The basis for measuring HRQL varies between instruments with different representations of what might be considered ‘good’ or ‘bad’ quality-of-life.…”

Section: Introductionmentioning

confidence: 99%

Quality-of-life assessment in dementia: the use of DEMQOL and DEMQOL-Proxy total scores

et al. 2016

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PurposeThere is a need to determine whether health-related quality-of-life (HRQL) assessments in dementia capture what is important, to form a coherent basis for guiding research and clinical and policy decisions. This study investigated structural validity of HRQL assessments made using the DEMQOL system, with particular interest in studying domains that might be central to HRQL, and the external validity of these HRQL measurements.MethodsHRQL of people with dementia was evaluated by 868 self-reports (DEMQOL) and 909 proxy reports (DEMQOL-Proxy) at a community memory service. Exploratory and confirmatory factor analyses (EFA and CFA) were conducted using bifactor models to investigate domains that might be central to general HRQL. Reliability of the general and specific factors measured by the bifactor models was examined using omega (ω) and omega hierarchical (ω h) coefficients. Multiple-indicators multiple-causes models were used to explore the external validity of these HRQL measurements in terms of their associations with other clinical assessments.ResultsBifactor models showed adequate goodness of fit, supporting HRQL in dementia as a general construct that underlies a diverse range of health indicators. At the same time, additional factors were necessary to explain residual covariation of items within specific health domains identified from the literature. Based on these models, DEMQOL and DEMQOL-Proxy overall total scores showed excellent reliability (ω h > 0.8). After accounting for common variance due to a general factor, subscale scores were less reliable (ω h < 0.7) for informing on individual differences in specific HRQL domains. Depression was more strongly associated with general HRQL based on DEMQOL than on DEMQOL-Proxy (−0.55 vs −0.22). Cognitive impairment had no reliable association with general HRQL based on DEMQOL or DEMQOL-Proxy.ConclusionsThe tenability of a bifactor model of HRQL in dementia suggests that it is possible to retain theoretical focus on the assessment of a general phenomenon, while exploring variation in specific HRQL domains for insights on what may lie at the ‘heart’ of HRQL for people with dementia. These data suggest that DEMQOL and DEMQOL-Proxy total scores are likely to be accurate measures of individual differences in HRQL, but that subscale scores should not be used. No specific domain was solely responsible for general HRQL at dementia diagnosis. Better HRQL was moderately associated with less depressive symptoms, but this was less apparent based on informant reports. HRQL was not associated with severity of cognitive impairment.Electronic supplementary materialThe online version of this article (doi:10.1007/s11136-016-1343-1) contains supplementary material, which is available to authorized users.

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The relationship between changes in quality of life outcomes and progression of Alzheimer's disease: results from the Dependence in AD in England 2 longitudinal study

Trigg

Jones

Knapp

et al. 2014

Int J Geriat Psychiatry

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ObjectiveThe relationship between conventional indicators of Alzheimer's disease (AD) progression and quality of life (QoL) outcomes is unclear. Dependence on others has been recommended as a unifying construct in defining AD severity. This study examined the relationship between indicators of disease severity (including dependence) and changes in QoL and utility over 18-months. MethodsA multi-centre, cohort study was conducted across 18 UK sites. One hundred and forty five patients with possible/probable AD and their caregivers completed assessments of disease severity (Dependence Scale, Mini-Mental State Examination, Neuropsychiatric Inventory, Disability Assessment for Dementia), dementia-specific QoL (DEMQOL, DEMQOL-Proxy) and generic healthrelated utility (EQ-5D) at both time points. ResultsThere was evidence of individual change in QoL over 18 months, with over 50% of patients reporting either maintenance or improvement of life quality. The EQ-5D proxy suggested a mean decline in QoL whilst the DEMQOL-Proxy indicated overall improvement. In the subsample of people who selfreported QoL and utility, no mean change was evident. Changes in dependence did not explain changes on any QoL or utility outcome. There was a weak association between the EQ-5D proxy and changes in cognition, whereas changes on the DEMQOL-Proxy were partly explained by changes in behavioural disturbance. ConclusionsThe natural progression of AD over 18-months does not lead to inevitable decline in QoL or utility. There are no clear or consistent direct relationships between changes in disease severity and QoL outcomes. The impact of increasing dependence and worsening disease severity is likely buffered by a combination of psychological, social and environmental factors.

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Health-related quality-of-life instruments for Alzheimer's disease and mixed dementia

Cited by 55 publications

References 81 publications

Characteristics Associated with Quality of Life in Long-Term Care Residents with Dementia: A Cross-Sectional Study

Characteristics Associated with Quality of Life in Long-Term Care Residents with Dementia: A Cross-Sectional Study

Quality-of-life assessment in dementia: the use of DEMQOL and DEMQOL-Proxy total scores

The relationship between changes in quality of life outcomes and progression of Alzheimer's disease: results from the Dependence in AD in England 2 longitudinal study

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