The Perspectives of People with Dementia: Research Methods and Motivations

By Heather Wilkinson | Go to book overview

Chapter Ten

'Nobody's ever asked how I felt'

Rebekah Pratt


Introduction

Interviewing people with dementia has become an increasingly important aspect of dementia research. Whilst the field has started to recognise the value of including people with dementia (Cotrell and Schulz 1993; Downs 1997) it is still learning how to conduct interviews in the most effective ways. There are many different ways to conduct interviews (Holloway and Jefferson 2000) but what is it about interviewing people with dementia that is different from interviewing other groups of people?

There are a number of issues that are particularly relevant to interviewing people with dementia. These issues relate to the nature of dementia and the impact of dementia on people's cognitive abilities. As social scientists we may lack useful knowledge about dementia, its causes, different types, symptoms and effects. It is this type of information that allows us to understand the way in which people with dementia may be different from other groups of people. Understanding these differences helps us as researchers to develop effective and appropriate ways of interviewing people with dementia.

This chapter will reflect on my experiences as a researcher working with people with early-stage dementia and will discuss some issues I faced in developing effective ways of interviewing. These issues do not relate to dementia exclusively, but are issues I felt were particularly relevant to the development of my own research practice. This includes the development of safe contexts, aspects of method, informed consent and developing

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