Topic: Valuing Lived Experience in the Design of the Neurobehavioural Unit at the Repat Health Precinct in Adelaide
Day: Thursday 22 October 2020
Time: 1:00pm-1:30pm AEDT
This presentation demonstrates how collaborative approaches to design can better equip commissioners and designers to create public infrastructure in a timely way and more capable of delivering the intended outcomes for its users. It uses the case study of the Neurobehavioural Unit (NBU) currently under construction at the Repat Health Precinct in Adelaide. The purpose of the NBU is to provide specialist care for people living with the most extreme behavioural and psychological symptoms of dementia (Tier 7 BPSD). It has been commissioned in response to recommendations following the closure of the Oakden Older Person’s Mental Health Service.
The presentation will outline a facilitated design process that emphasised the lived experience of families of people living with dementia as its primary influence, and included direct collaboration with policy makers, the site’s architects and consumer advocates. The conditions necessary for enabling all of these stakeholders to meaningfully contribute and collaborate with each other will also be described. In addition to families directly contributing to NBU’s design, the process generated a set of six key design principles and facilitated a deeper understanding of how designing for the most extreme symptoms of dementia may require some nuances distinct from more ‘mainstream’ dementia design.
Jenie is a Carer Consultant for the community older persons mental health services at SA health. SA Health is committed to protecting and improving the health of all South Australians by providing leadership in health reform, public health services, health and medical research, policy development and planning, with an increased focus on wellbeing, illness prevention, early intervention and quality care.
Jenie has lived experience of caring for a loved one who has been diagnosed with Dementia. From 2008-2012, Jenie cared for her husband Kym, who had a rare form of onset Alzheimer’s disease called familial Alzheimer’s, as well as Lewy Body dementia, at the age of 41. Lewy body dementia, also known as dementia with Lewy bodies, is the second most common type of progressive dementia after Alzheimer’s disease dementia. Kym spent the last 2 and a half years of his life in an aged care facility.
Jenie was one of the family members who contributed to the design of the Neurobehavioural Unit (NBU) at the Repat Health Precinct in Adelaide, which she describes as both a healing and emotional project to work on. She and her children are members of a support group for families working through the challenges of younger onset dementia. She regularly draws on her lived experience in contributing to better care outcomes for these teams. Jenie is a facilitator at the Dementia Cafe, Surrey Downs, a northeastern suburb of Adelaide, a place where people with dementia and carers can be themselves, share stories, get helpful hints and enjoy good company.