Measuring Quality of Life in Persons with Dementia

Abstract

Introduction: Dementia is a debilitating health condition affecting all aspects of an individual’s well-being. Quality of life (QOL) and health related quality of life (HRQOL) assessments play a large role in understanding the limitations within the patients’ lifestyle and helping care providers manage their needs better. Therefore, our aims for this thesis were twofold: 1. Explore the symptoms, behaviors, or activities deemed as priorities by caregivers for monitoring dementia progression, impact of treatment, or exploring alternative care, and 2. Examine the measurement properties of QOL and HRQOL measures used for people with dementia living in the community. Methods: For the first aim, a qualitative descriptive study was performed with caregivers of individuals living with dementia. Caregivers from various regions in Canada were enlisted, and virtual listening sessions took place between November 2022 and January 2023. Open-ended questions were employed to prompt participants to express their viewpoints. For the second aim, a systematic review guided by COsensus-based Standards for the selection of health Measurement Instruments (COSMIN) was performed to identify literature surrounding measurement properties of QOL and HRQOL measures used in community-dwelling adults with a diagnosis of dementia. A search was performed through four databases (Ovid MEDLINE, EMBASE, CINAHL, and PsychInfo) to identify literature published up until June 2022, followed by abstract and title screening and full-text review, which was performed in duplicate. Measurement properties extracted included structural validity, internal consistency, reliability (test-retest and inter-rater reliability), construct validity, and responsiveness. Risk of bias assessments and quality assessments were also performed for all identified QOL and HRQOL measures. Results: Through the listening sessions, we identified that mobility limitations, social interactions, emotions, feeding behaviors, cognitive difficulties and extrinsic factors were priority topics that caregivers wanted to highlight when assessing QOL for people with dementia. There were 13 dementia-specific and generic QOL and HRQOL measures included in the systematic review. Results showed varying quality of evidence for each of the measures with many having a moderate to very low score for some of the measurement properties. Conclusion: The first study showed dementia caregivers’ perspectives on how routine activities, mobility, social interactions, and behaviors, are important pillars of QOL and should be assessed in clinical and research settings for individuals living with dementia. The second study highlighted the importance of rigorously testing QOL instruments in order to provide accurate measurements when evaluating health concerns and impact of therapy. QOL measures can help researchers and healthcare providers obtain a comprehensive assessment of the individual they are treating.