Lived experiences and the design implications for living and dying with dementia in residential aged care facilities

There has been a significant increase in age-related diseases, particularly dementia. By necessity, people with dementia spend most of their time in one setting, typically a Residential Aged Care Facility (RACF), as the requirements of care exceed the resources of most families. With increased environmental sensitivities and dependence on the environment to support their diminished cognition appropriate design of RACFs becomes a critical factor in promoting well-being. The developing body of research on the design of environments for people with dementia is largely empirical, focused on mid-stage dementia, and on managing behavioural and clinical issues with minimal direct input from the perspective of people with dementia. Framed by hermeneutic phenomenology, this study explores the influence of the design of RACF built environments for people living with late stage dementia. Through collaboratively interpreted stories in an immersive case study setting, it interrogates the lived experiences of people with dementia, their families, and staff. These stories reveal the complex and at times, paradoxical construction of RACFs as both hospital and home, in addition to their unspoken and often unacknowledged role as places to die. I argue that rather than 'homes', RACFs need to be reconceptualised as hybrid places for the living and dying that anticipate and support the lived experiences of all those in the care triad. This requires the development of a new typology situated between the hospital, home and hospice and a paradigm shift in design thinking, practice, and policy aligned with the shifting landscape towards reciprocal models of care. Central to this transformation is recognition of the rights, value, and capacity of people with late-stage dementia to provide insights into their experiences of the world-of-being-inaged-care. The sensitively designed, collaborative, and inclusive approach in this study goes some way to identifying processes and procedures to enable their meaningful participation in future research and design projects.