Evidence Library

Title: Contributions of patient and citizen researchers to 'Am I the right way up?' study of balance in posterior cortical atrophy and typical Alzheimer's disease.
Author: Crutch SJ, Yong KX, Peters A, Ocal D, Kaski D, Gonzalez AS, Ryan N, Ball S, Harrison CR, Murphy C, Hulme P, Phillips I, Hulme G, Brown A, Brown L, Riley P, Ramsey L, Woods A, Day B.
Date Published: 2018
Reference: Dementia,17(8):1011-1022.
Are service users or carers authors: Yes

Abstract: In this article, the researchers describe their journey from hearing about a single, extraordinary experience during a support group conversation, to developing a novel study of balance problems in a rare form of dementia. The story centres around the involvement of people living with or caring for someone with a type of Alzheimer's disease that affects the part of the brain involved in vision. A carer in the support group happened to reveal how the person they cared for was affected by their condition, when the person one day asked 'Am I the right way up?' When the researchers heard about this experience, they went out to collect further descriptions of similar balance problems. They worked with people with this type of Alzheimer’s to test out initial ideas and to find out what approaches would work best for participants in a future study. The involvement of patients and carers therefore also influenced the design of the project that followed. The story inspired a group of artists to develop an animated film that recreated people’s experience of this symptom.

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Categories: health
Identifying topics, prioritising and commissioning
Designing research
impact on research
impact on researchers
impact of public involvement
journal article

Date Entered: 2019/01/08

Date Edited: 2019/01/08

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