Rural and regional community stakeholder perspectives on dementia, socio-spatial rights and community participation

• Local government consultative processes do not target people living with dementia. • Their absence as stakeholders contributes to their socio-spatial exclusion. • Recognising their personhood contributes to facilitating their socio-spatial rights. • Legislation is not dementia-inclusive, and dementia is not seen as a disability. • Targeted efforts are needed to achieve socio-spatial justice and health equity. Dementia-friendly communities (DFC) aim to address the socio-spatial exclusion of people living with dementia and carers. While the rights of people living with dementia and carers are often discussed in relation to DFCs, few are considered genuine rights based environments, and none specifically address socio-spatial rights. This has implications for planning policy and practice in terms of ensuring socio-spatial inclusion, social health and health equity. Drawing on Lefebvre’s (1996) ‘right to the city’ concept, this study aims to identify local government, healthcare organisation and community group perspectives on the rights of people living with dementia and carers to participation in decision-making, inclusion and access to public space and social activities. Semi-structured interviews were conducted with fifteen representatives of community stakeholder organisations and groups from a large non-metropolitan region in Victoria, Australia. Findings identify that socio-spatial rights are addressed through a personhood approach. The facilitation of socio-spatial rights is impeded by the absence of people living with dementia from participatory processes, as well as stigma, local government priorities, and the lack of dementia awareness, dementia-inclusive legislation and policy, and recognition of dementia as a disability. Dementia education and dementia-inclusive legislation and policies are critical to establishing genuine rights-based DFCs.