Including people with dementia in research

The chapter summarised below explores quality of life and dementia specifically and considers how we might get a better understanding of quality of life by listening to what people with dementia have to say about it. 

Dementia and Quality-of-Life Issues in Older People

DIAZ-PONCE, A., CAHILL, S.
Springer
2013

This chapter argues that to better understand dementia, an attempt must first be made to listen to the voices of people diagnosed with the condition and find out more from them about their own individual experiences and in particular about quality-of-life (QoL) issues.

The chapter considers various definitions of QoL, discusses issues surrounding how QoL can and should be measured and the limitations and benefits of using both qualitative and quantitative approaches, the challenges associated with seeking to gain insights about QoL from people with advanced dementia. It argues that using inductive approaches to explore QoL in dementia can offer more innovative and more in-depth understandings and draws on examples from research undertaken in the ROI by the authors to support this argument.