TY  - JOUR
PY  - 2018//
TI  - 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
JO  - Dementia (London)
A1  - Crutch, Sebastian J.
A1  - Yong, Keir Xx
A1  - Peters, Amy
A1  - Ocal, Dilek
A1  - Kaski, Diego
A1  - Gonzalez, Aida Suarez
A1  - Ryan, Natalie
A1  - Ball, Simon
A1  - Harrison, Charlie R.
A1  - Murphy, Charlie
A1  - Hulme, Pam
A1  - Phillips, Isabel
A1  - Hulme, Gaynor
A1  - Brown, Andrew
A1  - Brown, Lu
A1  - Riley, Peter
A1  - Ramsey, Lynn
A1  - Woods, Anthony
A1  - Day, Brian
SP  - 1011
EP  - 1022
VL  - 17
IS  - 8
N2  - 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.<p />  <p>Language: en</p>
LA  - en
SN  - 1471-3012
UR  - http://dx.doi.org/10.1177/1471301218789296
ID  - ref1
ER  -