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

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. Methods: An electronic search of PsycINFO and PubMed was conducted, from inception to December 2011 using a combination of key words that included quality of life and dementia. Results: Fifteen dementia-specific HRQL instruments were identified. Instruments varied depending on their country of development/validation, dementia severity, data collection method, operationalization of HRQL in dementia, psychometric properties, and the scoring. The most common domains assessed include mood, self-esteem, social interaction, and enjoyment of activities. Conclusions: A number of HRQL instruments for dementia are available. The suitability of the scales for different contexts is discussed. Many studies do not specifically set out to measure dementia-specific HRQL but do include related items. Determining how best to operationalize the many HRQL domains will be helpful for mapping measures of HRQL in such studies maximizing the value of existing resources.