"They didn't think we'd do it!": Community gardening as an act of resistance for people with dementia

Abstract

People living with dementia commonly report negative experiences such as disempowerment, stigma, and oppression. Community gardening has demonstrated its potential as a forum for the practice of resistance against the oppressions experienced by other marginalised groups; however, this element of the experience of community gardening has yet to be explored in the context of dementia. A collaboratively-designed community gardening project took place over six weeks, involving six people with dementia. The participants selected all activities undertaken in the garden. Data were collected through semi-structured group interviews with the gardeners and researcher observations. Context-setting semi-structured individual interviews were conducted with four day centre staff members, and three key informants who had experienced working with people with dementia in the garden. The garden acted as a platform for the articulation of both verbal and embodied expressions of resistance against the disempowerment and loss of agency experienced by many people with dementia. The participatory design of the gardening sessions enabled the gardeners to assert their autonomy and independence, and defy the negative stereotypes associated with dementia, which some of the group members appeared to have internalised. Community gardening activities may offer a forum for expressions of resistance against the structures oppressing individuals with dementia. However, in order for this potential to be unlocked, such initiatives must be collaboratively designed, following an approach which recognises the strengths and enduring abilities of people living with dementia. Additionally, the empowering impact of community gardening should not be diluted by positioning the activity as a substitute for adequate statutory health and social care provision, thereby individualising responsibility for the wellbeing of people with dementia.

Keywords: Agency; Community gardening; Dementia; Resistance; Stigma.