The Right to (Re)Shape the City

Problem, research strategy and findingsThe number of people living with dementia (PLWD) is set to increase to 132 million by 2050, with most expected to reside in their own homes, not congregate living settings. Limited research on the impact of the built environment on PLWD has focused on planning outcomes, with no research on access to the planning process that shapes the places they live in. In this study I ask: what are the barriers and facilitators to participation for PLWD at open houses? I accompanied seven PLWD (individually or in pairs) to open houses, a commonly used public engagement tool, in Waterloo (Canada). To capture the experiences, I used audio recordings, field notes and sketches, photographs, and a postexperience interview with participants. Accessibility of public engagement tools for PLWD can be improved by ensuring respectful and patient communication (not rushing attendees, using plain language); providing clear, concise presentation materials (less is more, offering in-the-moment feedback opportunities); and using a familiar, comfortable physical location (sensitive to sensory overstimulation through acoustics and lighting). The sense of inclusion participants felt in attending the open houses was unexpected.Takeaway for practiceThe open house is already well suited to the accessibility needs of PLWD, with peripheral, circular layouts allowing participants to learn at their own pace and interact one on one with practitioners. However, the recommendations that would make public engagement tools more accessible to PLWD are easily implementable, and by educating planners in these techniques there could be an opportunity for the profession to help dismantle the stigma associated with dementia. The commonly used public engagement tools used during the planning process need to be universally accessible so PLWD and other people with disabilities can attend any meeting they choose and have an impact on decision making in their communities.