The Perspectives of People With Dementia: Research Methods and Motivations

by Wilkinson, Heather

• ISBN13: 9781843100010
• ISBN10: 1843100010
• Edition: 1st
• Format: Paperback
• Copyright: 2002-01-01
• Publisher: JESSICA KINGSLEY

Summary

People with dementia have often played a passive role in the investigation of their condition. The contributors to this book look at ways of redressing the balance and involving them in the research process. They describe the skills that researchers and care staff need, and the methods they can use, when seeking to draw out and validate the views of people with dementia successfully, and discuss the ways in which such views can be included in debates about dementia methodology and policy. The book focuses on a number of projects which have taken different approaches to working with people with dementia in research, including a chapter examining the difficult process of interviewing people with dementia whose first language is not English and a chapter describing a project which encourages people with dementia to participate in the analysis of the research findings. This varied and innovative book will help those in the fields of health and social policy, dementia resea

Table of Contents

Part one: Ethical and practical issues of involvement
Including people with dementia in research: methods and motivations	9	(16)
Heather Wilkinson
Getting down to brass tracks: a discussion of data collection with people with dementia	25	(22)
Charlotte L. Clarke
John Keady
Ethical issues in dementia care research	47	(16)
Helen Bartlett
Wendy Martin
Including the perspectives of older people in institutional care during the consent process	63	(20)
Gill Hubbard
Murna Downs
Susan Tester
Including people with dementia: advisory networks and user panels	83	(18)
Lynne Corner
Part two: The views of people with dementia
Should people with Alzheimer's disease take part in research?	101	(8)
Elaine Robinson
Did research alter anything?	109	(8)
James McKillop
Part three: Methods and motivations
Working with staff to include people with dementia in research	117	(22)
Kate Allan
Successes and challenges in using focus groups with older people with dementia	139	(26)
Claire Bamford
Errollyn Bruce
`Nobody's ever asked how I felt'	165	(18)
Rebekah Pratt
Don't leave me hanging on the telephone: interviews with people with dementia using the telephone	183	(26)
Anne Mason
Heather Wilkinson
Using video observation to include the experiences of people with dementia in research	209	(14)
Ailsa Cook
South Asian people with dementia: research issues	223	(20)
Alison M. Bowes
Heather Wilkinson
List of Contributors	243	(4)
Subject Index	247	(6)
Author Index	253