The Perspectives of People with Dementia: Research Methods and Motivations

By Heather Wilkinson | Go to book overview

Chapter Two

Getting down to brass tacks
A discussion of data collection
with people with dementia

Charlotte L. Clarke and John Keady


Introduction

This chapter aims to explore some of the main concepts surrounding data collection, ethical practice and social research conducted with people with dementia and their support networks, an agenda that has gathered real momentum from the mid-1980s and captured many new insights into the experience of those with dementia. In order to explore the philosophical and practical shift behind this movement, the chapter will commence by briefly rehearsing recent trends that have seen the person with dementia become the focal point of policy, research and practice attention. The chapter will then couple exemplars from the social science literature with the authors' own research experience to illuminate the varying facets of social research enquiry that have involved people with dementia, focusing in particular upon the data collection phase of the study. This aspect of the text will also be supported by literature from other fields that have experienced the marginalisation of people from research (such as people with learning disabilities and children). There are many points of overlap between the fields, notably in the approach to sensitive interviewing and ensuring informed consent to participate. Finally, the authors will conclude the chapter by pulling together the common threads from the

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