Health-related quality of life in older people with severe dementia: challenges for measurement and management

Abstract

The current dementia epidemic, coupled with the absence of a cure for the disease, means that an increasing number of people with dementia are likely to experience the severe stage. Given that this final stage adversely impacts not only the person living with the disease (i.e., cognitive impairment and limited communication), but also their family members and caregivers (i.e., burden and stress), there is a pertinent need to understand the needs and desires of the person to help shape optimal care management practices. In this article, literature produced in the last 5 years, regarding measurement and management challenges encountered when researching health-related quality of life in older people with severe dementia, is reviewed. The paper aims to provide important, up-to-date insight into the type and amount of research undertaken with this population, including the measurement tools currently used and the challenges faced, and pose recommendations for future research.

Keywords::

• advanced dementia
• challenges
• evidence-based
• health-related quality of life
• instruments
• literature review
• management
• measurement
• scales
• severe dementia

Acknowledgements

The authors acknowledge Sierra Van Wyk for her diligent assistance in searching bibliographic databases for the literature and in locating specific full-text articles.

Financial & competing interests disclosure

The authors have no relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript. This includes employment, consultancies, honoraria, stock ownership or options, expert testimony, grants or patents received or pending, or royalties.

No writing assistance was utilized in the production of this manuscript.