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

Abstract

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.

Planning and enabling meaningful patient and public involvement in dementia research

“…130 papers were identified of which 16 studies were retrieved for inclusion. The studies documented PPI involvement from the researcher's perspective (7)(8)(9)(10)(11)(12)(13)(14)(15)(16)(17)(18), through analysis of workshop and advisory committee minutes (19,20) or by directly asking PPI representatives for their experiences (21*, 22**).…”

“…Eleven studies involved caregivers and/or PLWD on advisory committees as "critical friends" to the study (7,8,12…”

“…Two studies involved PLWD and caregivers in study design, with one using experiences from a support group for people with dementia and balance problems to develop and adapt sensorimotor equipment for use within this population (8), while the other consulted PLWD and caregivers in the design of an accessible Delphi survey on outcome measures for studies of non-pharmacological interventions (13).…”

Impairments of auditory scene analysis in posterior cortical atrophy

“…Patients with PCA have particular difficulty interpreting and navigating 'busy', dynamic visual environments requiring parsing of multiple objects distributed in space (Shakespeare et al, 2013;Yong et al, 2018). Posterior cortical functions such as calculation, spelling and praxis are also affected in PCA (Benson et al, 1988;Crutch et al, 2017), along with other cognitive domains including language (Crutch et al, 2013), episodic memory (Ahmed et al, 2018), working memory (Trotta et al, 2019), executive functioning (Putcha et al, 2018), and visuo-vestibular integration (Crutch et al, 2018).…”

Editorial: Patient and public involvement in dementia research: Setting new standards

“…Both Parveen et al (2018) and Young, Ferguson-Coleman and Keady (2018) report PPI methods in projects addressing lesser-researched populations, specifically the South Asian and British Sign Language communities. Similarly, Crutch et al (2018) consider PPI in a project of a rarer dementia -posterior cortical atrophy -where the way dementia is experienced may be very different to more common forms such as Alzheimer's disease. Three additional reports are also included in the special edition, from Litherland et al 2018, Hayes, Costello, Nurock, Cornwall and Francis (2018) and Gregory et al (2018).…”