Including people with dementia in research

In this section you will find a book chapter that 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. You will also find a report by the Alzheimer’s Society UK, targeting the unheard voices of people with dementia. It covers England, Wales and Northern Ireland and analyses the results of the largest scale survey of people with dementia carried out by the Society.

Inclusion of People with Dementia in the Design of Services

Milton, S.
This learning paper from Genio starts by presenting some recent developments in involving people with dementia in service design and outlines the many benefits of doing so.
The next section of the paper focuses on the practice of involving people with dementia, and looks at the different ways in which people with dementia can be involved. It distinguishes between co-design, co-production and co-creation and what they mean in the process of problem-solving, and also explains the difference between user-led and professional-led design. In discussing how to involve people with dementia in the design of services, the paper examines the ways of communication with people with dementia, involving people with dementia in wider groups and supports needed to do this. It points out that sometimes a separate process is needed to involve people with dementia and highlights the importance of creating a listening culture. Finally, the paper outlines the perceived barriers to involving people with dementia in the design of services, some of which were identified by people with dementia themselves and others by the participants in a Genio workshop on the topic, but helpfully solutions are proffered for each perceived barrier.

Turning up the Volume: unheard voices of people with dementia

Alzheimer Society UK
This report by the Alzheimer Society UK covers England, Wales and Northern Ireland. It analyses the results of the largest scale survey of people with dementia carried out by the Society, coupled with in depth interviews.
These results were combined with a survey of carers and of the general public. Chapter one reports on the findings and includes a number of case studies. Over half of the public feel that their life would be over if they received a diagnosis of dementia and there is also evidence that fear and stigma continue to create resistance to actually getting a diagnosis. Over 60% of carers believe their health has been negatively impacted by the experience of caring and also report a real financial impact. Many people with dementia and carers feel abandoned by the system. In 2010 a series of statements relating to how people with dementia want to live were created by what later became known as the Dementia Action Alliance. Chapter 2 of the report details the updated versions of these statements while chapter 3 challenges government, care providers and the public to play their part in creating a new, better deal for people with dementia.

Dementia and Quality-of-Life Issues in Older People


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.