The concept of quality of life in dementia in the different stages of the disease

Ettema, Teake P.; Dröes, Rose-Marie; Lange, J. de; Ooms, Marius; Mellenbergh, Gideon J.; Ribbe, Miel W.

doi:10.1017/s1041610205002073

Cited by 136 publications

(155 citation statements)

References 42 publications

(61 reference statements)

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“…The differences in the rating of QOL between self-report and proxy report generally depend on variables such as depressive symptoms and severity of dementia and should be recognized [55,61,62,63,64]. The QUALIDEM was developed to measure QOL in persons with dementia; however, observational instruments always have the possibility of observer bias [65]. The QUALIDEM was the last instrument filled by the nurse, and recall of earlier items could have influenced the answers.…”

Section: Discussionmentioning

confidence: 99%

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: Discussionmentioning

confidence: 99%

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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“…In the early stages of dementia the positive ratings of patients can be understood in terms of psychological mechanisms, the disability paradox (adaptation to change) [32], or processes of "self-maintaining" and "self-adjusting" [33]. The more negative ratings of caregivers can be explained by the impact of the diagnosis and the functional and behavioral changes in the patient, which would produce greater burden.…”

Section: Patient and Caregiver Perceptions Of The Patient's Quality Omentioning

confidence: 99%

Discrepancies Regarding the Quality of Life of Patients with Alzheimer's Disease: A Three-Year Longitudinal Study

Conde-Sala

Turró‐Garriga

Garré-Olmo

et al. 2014

JAD

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Abstract.Cross-sectional studies report notable discrepancies between patient and caregiver ratings of the quality of life of patients (QoL-p) with Alzheimer's disease (AD). This study aimed to identify the factors associated with any changes in QoL-p ratings and any discrepancies between patient and caregiver ratings of QoL-p. Three-year follow-up of a cohort of noninstitutionalized patients (n = 119). QoL-p was assessed by the Quality of Life in AD (QoL-AD) scale. We analyzed the influence of functional and cognitive status and behavioral problems in patients, and burden and mental health in caregivers. Repeated measures analysis was applied to the scores of patients and caregivers on the QoL-AD, and to the discrepancies between them. Generally, patients' own ratings remained stable over time (F 3,116 = 0.9, p = 0.439), whereas caregiver ratings showed a decline (F 3,116 = 9.4, p < 0.001). In the analysis of discrepancies, patients with anosognosia gave higher ratings (F 1,117 = 11.9, p = 0.001), whereas caregiver ratings were lower when the patient showed greater agitation (F 1,117 = 13.0, p < 0.001), apathy (F 1,117 = 15.4, p < 0.001), and disabilities (F 1,117 = 17.1, p < 0.001), and when the caregiver experienced greater burden (F 1,117 = 9.0, p = 0.003) and worse mental health (F 1,117 = 10.1, p = 0.003). Patient ratings of QoL-p remain generally stable over time, whereas those of caregivers show a decline, there being significant discrepancies in relation to specific patient and caregiver factors.

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“…Thus, there is a need for a tool to assess an individual's QoL as an important outcome measure both in clinical practice and in research. There is no universally accepted definition of dementia-specific QoL, but most specialists in the field agree that it is a multidimensional concept including the person's subjective experience of life and objective criteria related to activities valued by society [6,7,8]. …”

Section: Introductionmentioning

confidence: 99%

The Reliability and Validity of the Norwegian Version of the Quality of Life in Late-Stage Dementia Scale

Røen

Selbæk

Kirkevold

et al. 2015

Dement Geriatr Cogn Disord

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Aim: To translate the Quality of Life in Late-Stage Dementia (QUALID) Scale into Norwegian, and to evaluate the test-retest reliability and validity of the scale. Method: QUALID was translated according to standardised procedures. Residents with dementia living in nursing homes were included in the study and assessed using QUALID, Cornell Scale for Depression in Dementia, Neuropsychiatric Inventory, Physical Self-Maintenance Scale and Clinical Dementia Rating Scale. Results: Cronbach's α of QUALID was 0.79. In the reliability study, the intra-class correlation was 0.83. The validity study showed a strong association between depressive symptoms and QUALID, and a moderate association between QUALID and assessments of level of functioning and agitation. Conclusions: The Norwegian version of QUALID is a reliable and valid scale for assessing quality of life in nursing home residents with dementia.

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The concept of quality of life in dementia in the different stages of the disease

Cited by 136 publications

References 42 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

Discrepancies Regarding the Quality of Life of Patients with Alzheimer's Disease: A Three-Year Longitudinal Study

The Reliability and Validity of the Norwegian Version of the Quality of Life in Late-Stage Dementia Scale

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