QUALIDEM: development and evaluation of a dementia specific quality of life instrument––validation

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

doi:10.1002/gps.1692

Cited by 186 publications

(213 citation statements)

References 29 publications

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“…There has been a movement in QoL toward the measurement of the experience of the person, including usually perceptions or satisfactions with psychological, physical, and social domains (Ettema et al, 2005b). In dementia-specific HRQL instruments, the measurement is also aimed at capturing the experience of the person with dementia.…”

Section: Conceptualization and Operationalizationmentioning

confidence: 99%

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

Perales

Cosco

Stephan

et al. 2013

Int. Psychogeriatr.

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Background: Over the last 20 years, a number of instruments developed for the assessment of health-related quality of life (HRQL) in dementia have been introduced. The aim of this review is to synthesize evidence from published reviews on HRQL measures in dementia and any new literature in order to identify dementia specific HRQL instruments, the domains they measure, and their operationalization.

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Section: Conceptualization and Operationalizationmentioning

confidence: 99%

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

Perales

Cosco

Stephan

et al. 2013

Int. Psychogeriatr.

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“…(2) The Quality of Life Alzheimer's Disease scale (QoL-AD) is a self-report questionnaire including 13 items, each one rated on a 1-4 Likert scale, which can be completed both by patients with mild to moderate dementia and by informal caregivers, and yields a single score which weights patient's score twice as much as [Brod et al 1999] QoL-AD [Logsdon et al 2002] DEMQOL [Smith et al 2005] CBS [Ready et al 2002] ADRQL [Rabins et al 1999] DS-DAT [Hurley et al 1992] Vienna List [Porzsolt et al 2004] Qualidem [Ettema et al 2007 [Rabins et al 1999]. (6) The Discomfort Scale -Dementia of Alzheimer Type (DS-DAT) encompasses nine behavioral indicators of discomfort in patients with severe dementia and language disorders, rated by professional caregivers [Hurley et al 1992].…”

Section: Introductionmentioning

confidence: 99%

Management of patients with Alzheimer’s disease: pharmacological treatment and quality of life

Mossello¹,

Ballini

2012

Therapeutic Advances in Chronic Disease

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Abstract:A methodological approach to quality of life (QoL) assessment in Alzheimer's disease (AD) is challenging and few clinical trials have included it among outcomes, with conflicting results. In this review an indirect appraisal of evidence has been performed, searching the literature for the effect of drug treatments on determinants of QoL in AD. Among clinical factors associated with QoL, possible targets of drugs include cognition, which seems to be associated with QoL in early disease and can be positively affected by cholinesterase inhibitors (CIs) in this stage; functional decline, the risk of which can be decreased by CIs and memantine (MEM); behavioral and psychological symptoms, which can be reduced by MEM and atypical antipsychotics. Long-term observational studies have associated CIs and MEM treatment with a reduced institutionalization risk. According to the evidence, drug treatment of depression associated with AD should not be first choice from a QoL perspective, while treatment of pain can have beneficial effects on wellbeing indicators also in the late stages of the disease. Possible drug-related adverse events can affect QoL and should always be weighed against expected benefits from the patient's perspective. For this reason antipsychotic treatment is often problematic in AD and should be limited to severe psychosis and aggression, using the lowest effective doses for the shortest possible period. Conversely titration of CIs is necessary to reach the most effective dosages, although dose-related risk of adverse events has to be taken into account. Finally, CIs and MEM have been shown to reduce caregiver burden in randomized trials, possibly affecting caregivers' QoL.

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“…The QUALIDEM is an observational instrument, and the reliability and validity are satisfactory [11,27] . The scale includes 37 items describing observable behavior with four possible responses to how often this behavior has been observed in the past week, ranging from never to almost daily.…”

Section: Quality Of Lifementioning

confidence: 99%

“…For instance, Thomas et al [3] and Bostrom et al [4] found a significant lower QoL in community-dwelling people with Lewy body dementia compared to Alzheimer dementia (AD). Furthermore, increased cognitive impairment and the presence of neuropsychiatric symptoms (NPS) were negatively associated with QoL in both community-dwelling people and nursing home residents with dementia [2,3,[5][6][7][8][9][10][11][12][13] . Of the NPS studied, especially depression was strongly associated with lower QoL scores [5,[7][8][9][10][11][14][15][16] .…”

Section: Introductionmentioning

confidence: 99%

The Determinants of Quality of Life of Nursing Home Residents with Young-Onset Dementia and the Differences between Dementia Subtypes

Appelhof¹,

Bakker

IJssel

et al. 2017

Dement Geriatr Cogn Disord

1,696

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Aims:The aims of this study are to (1) explore the determinants of quality of life (QoL) in nursing home residents with young-onset dementia (YOD), (2) investigate whether there are differences between dementia subtypes (Alzheimer dementia, vascular/mixed dementia, frontotemporal dementia, other) regarding these determinants, and (3) compare QoL profiles of YOD nursing home residents across dementia subtypes. Methods: This cross-sectional study included 207 nursing home residents. Multilevel modeling was used to determine the relationships between QoL and neuropsychiatric symptoms (NPS), dementia severity, psychotropic drug use (PDU), dementia subtype, age, and gender. Additional multilevel models were used to compare aspects of QoL between dementia subtypes. Results: Residents' QoL was negatively associated with advanced dementia, PDU, and NPS. In general, the relationships between the determinants and QoL were similar across the dementia subtypes. Aspects of QoL differed by dementia subtype. Residents with frontotemporal dementia showed less negative emotions, accepted more help and experienced better quality of relationships with professional caregivers, had a more positive self-image, felt more comfortable in the nursing home environment, and experienced lower quality of social relationships. Conclusions: Considering the high rates of NPS and PDU in YOD residents and their negative associations with QoL, we recommend emphasizing services to manage and reduce NPS and PDU in nursing home residents with YOD. Furthermore, our findings suggest accounting for differences in aspects of QoL by dementia subtype to address specific needs and thereby improve QoL.

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QUALIDEM: development and evaluation of a dementia specific quality of life instrument––validation

Abstract: The results of this validation study together with the obtained content validity through the method of construction provide sufficient support for validity of the QUALIDEM to be used for care evaluation and research in residential settings.

Cited by 186 publications

References 29 publications

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

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

Management of patients with Alzheimer’s disease: pharmacological treatment and quality of life

The Determinants of Quality of Life of Nursing Home Residents with Young-Onset Dementia and the Differences between Dementia Subtypes

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