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

• Published in: Dementia (London, England) Vol. 17; no. 8; pp. 1011 - 1022
• Main Authors: Crutch, Sebastian J, Yong, Keir XX, Peters, Amy, Ocal, Dilek, Kaski, Diego, Gonzalez, Aida Suarez, Ryan, Natalie, Ball, Simon, Harrison, Charlie R, Murphy, Charlie, Hulme, Pam, Phillips, Isabel, Hulme, Gaynor, Brown, Andrew, Brown, Lu, Riley, Peter, Ramsey, Lynn, Woods, Anthony, Day, Brian
• Format: Journal Article
• Language: English
• Published: London, England SAGE Publications 01.11.2018
• Subjects: Alzheimer Disease - classification; Alzheimer Disease - psychology; Atrophy - physiopathology; Cerebral Cortex - physiopathology; Community Participation; Humans; Postural Balance - physiology; Retrospective Studies; balance; vestibular; Alzheimer's disease; patient and public involvement
• ISSN: 1471-3012; 1741-2684
• DOI: 10.1177/1471301218789296

The current report describes the journey from the sharing of a single, extraordinary experience during a support group conversation to the development of a novel scientific investigation of balance problems in a rarer form of dementia. The story centres around the involvement of people living with or caring for someone with posterior cortical atrophy (often referred to as the visual variant of Alzheimer’s disease) in highlighting hitherto under-appreciated consequences of their condition upon their ability to know ‘Am I the right way up?’. We describe how comments and descriptions of these balance symptoms were collated and communicated, and the involvement of people with posterior cortical atrophy in shaping a series of scientific hypotheses and developing and adapting appropriate experimental materials and procedures. We also reflect more broadly on how we might better recognise, acknowledge and encourage different forms of involvement, and describe several engagement-inspired extensions to the research involving people living with dementia, scientists and artists.