Quality of life in people with dementia living in nursing homes: validation of an eight-item version of the QUALIDEM for intensive longitudinal assessment

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Abstract

Purpose

Our aim was to examine whether quality of life which was repeatedly assessed over time is related with the comprehensive assessment of quality of life (QoL) and thereby to validate a brief QoL assessment.

Method

This longitudinal study used a comprehensive assessment of quality of life at baseline (QUALIDEM; 37 items) to validate an eight-item version of QUALIDEM to assess momentary quality of life which was repeatedly administered using a tablet device after baseline. In all, 150 people with dementia from 10 long-term facilities participated. Momentary quality of life and comprehensive quality of life, age, gender, activities of daily living (Barthel Index), Functional assessment staging (FAST), and Geriatric Depression (GDS) have been assessed.

Results

Comprehensive and momentary quality of life showed good internal consistency with Cronbach’s alpha of .86 and .88 to .93, respectively. For multiple associations of momentary quality of life with the comprehensive quality of life, momentary quality of life was significantly related to comprehensive quality of life ( B = .14, CI .08/.20) and GDS ( B = − .13, CI − .19/− .06). More specifically, the comprehensive QUALIDEM subscales ‘positive affect’, ‘negative affect’, ‘restlessness’, and ‘social relationships’ showed significant positive associations with momentary quality of life ( p < .001).

Conclusion

We found that momentary quality of life, reliably assessed by tablet, was associated with comprehensive measures of quality of life and depressive symptoms in people with dementia. Broader use of tablet-based assessments within frequent QoL measurements may enhance time management of nursing staff and may improve the care quality and communication between staff and people with dementia.

Electronic supplementary material

The online version of this article (10.1007/s11136-020-02418-4) contains supplementary material, which is available to authorized users.

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Most cited references 41

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Ecological momentary assessment.

Saul Shiffman, Arthur Stone, Michael R. Hufford (2008)

Assessment in clinical psychology typically relies on global retrospective self-reports collected at research or clinic visits, which are limited by recall bias and are not well suited to address how behavior changes over time and across contexts. Ecological momentary assessment (EMA) involves repeated sampling of subjects' current behaviors and experiences in real time, in subjects' natural environments. EMA aims to minimize recall bias, maximize ecological validity, and allow study of microprocesses that influence behavior in real-world contexts. EMA studies assess particular events in subjects' lives or assess subjects at periodic intervals, often by random time sampling, using technologies ranging from written diaries and telephones to electronic diaries and physiological sensors. We discuss the rationale for EMA, EMA designs, methodological and practical issues, and comparisons of EMA and recall data. EMA holds unique promise to advance the science and practice of clinical psychology by shedding light on the dynamics of behavior in real-world settings.

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Determinants of Quality of Life in Nursing Home Residents with Dementia

R.B. Wetzels, R. Wetzels, S.U. Zuidema … (2010)

Aims: The goal of this study is to assess the relationship between quality of life (QoL), neuropsychiatric symptoms (NPS), psychotropic drug use (PDU) and patient characteristics in a large group of nursing home residents with dementia. Methods: This cross-sectional observational study included 288 individuals with dementia who reside in 14 special care units in 9 nursing homes. The following measures were used: the Qualidem scale to assess QoL, the Neuropsychiatric Inventory-Nursing Home version, the Global Deterioration Scale (GDS), the Severe Impairment Battery-short version, an Activities of Daily Living scale and PDU. Associations between QoL and NPS were examined using multivariate linear regression models with corrections for potential covariates. Results: The average age of the residents was 84 years (SD = ±7). Agitation, depression, psychosis, psychomotor agitation and psychotropic drugs were independently associated with poor QoL. In patients with mild to moderately severe dementia (GDS 4–6), NPS, PDU and cognitive impairment explained almost half of the variance in QoL scores. Agitation and depression were particularly strong predictors of poor QoL. In patients with severe dementia (GDS 7), agitation, depression, psychosis and cognitive impairment were associated with poor QoL. Conclusions: NPS, cognition and PDU independently impair QoL for patients in both the moderate and advanced stages of dementia. These results challenge existing pharmacological intervention strategies and highlight the need for psychosocial interventions in the treatment of NPS.

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Ecological momentary assessment in aging research: a critical review.

Ashley E Cain, Colin A. Depp, Dilip V. Jeste (2009)

Ecological momentary assessment (EMA) gathers respondent data on affective, behavioral, and contextual experiences as close in time to those experiences as possible. Potential advantages of EMA in aging research include reducing memory biases and gathering intra-individual data, yet there is little understanding about implementation. The goal of this critical review was to assess the feasibility and applications of EMA in psychological and behavioral research on aging. Through a comprehensive search of the online electronic databases, Psycinfo and Pubmed, for English-language peer-reviewed journals published between 1990 and 2007, we identified 40 articles using EMA methods in older adults. Studies sampled participants between five times per day over one day to once a week for 210 days. Samples were generally not cognitively impaired, evenly split between healthy and clinical populations, and only 6 of 40 studies focused on psychiatric diagnoses. The most common assessment content solicited ratings on affect (n=15), activities of daily living (n=12), physical activities (n=10), and social exchanges (n=8). A total of 90% of the studies that reported compliance reported rates over 80%. Uses of EMA varied widely, with research goals including validation of global measures, detection of subtle treatment effects, and for testing hypotheses about causal intra-individual relationships. Although these measures appear feasible and useful in aging research, recommendations for future studies include adapting measures to enable data collection among older participants with cognitive impairments and/or psychopathology, along with greater use of electronic data capture to improve compliance and increase ease of implementation.

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Author and article information

Contributors

Stefan Junge:

ORCID: http://orcid.org/0000-0003-3150-1505

stefan.junge@charite.de

Journal

Journal ID (nlm-ta): Qual Life Res

Journal ID (iso-abbrev): Qual Life Res

Title: Quality of Life Research

Publisher: Springer International Publishing (Cham )

ISSN (Print): 0962-9343

ISSN (Electronic): 1573-2649

Publication date (Electronic): 18 January 2020

Publication date PMC-release: 18 January 2020

Publication date (Print): 2020

Volume: 29

Issue: 6

Pages: 1721-1730

Affiliations

[1 ]GRID grid.6363.0, ISNI 0000 0001 2218 4662, Institute of Medical Sociology and Rehabilitation Science, , Charité – Universitätsmedizin, ; Charitéplatz 1, 10117 Berlin, Germany

[2 ]GRID grid.6734.6, ISNI 0000 0001 2292 8254, Quality and Usability Lab, , Technical University of Berlin, ; Ernst-Reuter-Platz 7, 10587 Berlin, Germany

Author information

Stefan Junge http://orcid.org/0000-0003-3150-1505

Paul Gellert http://orcid.org/0000-0001-7492-7210

Jan-Niklas Voigt-Antons http://orcid.org/0000-0002-2786-9262

Adelheid Kuhlmey http://orcid.org/0000-0003-4088-4675

Article

Publisher ID: 2418

DOI: 10.1007/s11136-020-02418-4

PMC ID: 7253522

PubMed ID: 31955375

SO-VID: 2e869ebe-e744-4a7a-9140-7a6a7fc5e2b2

License:

Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/.

History

Date accepted : 6 January 2020

Funding

Funded by: GKV-Spitzenverband

Award ID: 0001

Award Recipient : Johanna Nordheim

Custom metadata

ScienceOpen disciplines: Public health

Keywords: caregiving,well-being,nursing home,quality of life,alzheimer’s disease,touchscreen tablet

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ScienceOpen disciplines: Public health

Keywords: caregiving, well-being, nursing home, quality of life, alzheimer’s disease, touchscreen tablet

Quality of life in people with dementia living in nursing homes: validation of an eight-item version of the QUALIDEM for intensive longitudinal assessment

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Most cited references 41

Ecological momentary assessment.

Determinants of Quality of Life in Nursing Home Residents with Dementia

Ecological momentary assessment in aging research: a critical review.

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