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Dr Anita Goh: “Co-Design Places Lived Experience on Equal Footing with Professional Experience.”

9 Aug 2021, by Skye Rytenskild

The Royal Commission into Aged Care Quality and Safety has catalysed sector-wide debate on how to successfully implement reforms that will improve the lives of older Australians. Dr Anita Goh, one of Australia’s leading authorities on quality of life in ageing, says that co-designing care delivery with the people who will actually benefit from services is essential to meaningful change.

Anita is a clinician researcher and clinical neuropsychologist focusing on cognitive health, mental health and well-being, with a specialisation in neurodegenerative and psychiatric disorders. She will be taking part in the 12th Annual National Dementia & Aged Care Reform Conference, 23 – 25 November in Melbourne, joining a panel on ‘Making Co-Design a Reality’.

A Lifelong Fascination with the Human Brain 

Anita has always been interested in the brain and how it intersects with behaviour. Majoring in psychology and anatomy at university, she did her doctorate in neuropsychology.

“The brain is so complex and beautiful and enigmatic, and there is so much we don’t know about it. For example, even if people have exactly the same neuropathological disorder – such as Alzheimer’s disease – no two people will present or behave in the same way, and they will have different experiences of disease onset, signs and symptoms, and trajectory.”

“I became a clinician-scientist because I hope to make a difference by providing evidence-based direct care, and, at the same time, satisfy my curiosity and hopefully enable larger-scale change through research.”

Anita is also Chair of the Alzheimer’s Association International Society to Advance Alzheimer’s Research and Treatment Health Policy Group, Co-Chair of the Australian Special Interest Group in Young Onset Dementia, and Australian Association of Gerontology Victorian Division Vice Chair.

With such a demanding workload, Anita says she stays motivated by keeping the people impacted by dementia at the forefront of her work.

“I say this a lot, but humans are my favourite animals. I love engaging with patients in the clinic, family members, research participants, colleagues, students, and the general public. I learn something new almost every day, and I am so motivated to improve the quality of life for those impacted by dementia and by mental health conditions.”

Co-Design Can Solve Fundamental Problems in Aged Care 

Anita acknowledges that problems with access to diagnosis, care, and research are systemic and widespread, with great inequities – and this was sadly highlighted by the recent Royal Commission into Aged Care Quality and Safety. She is proud to be part of a team that is working towards change and believes that co-design is crucial to the future of the sector.

“Co-design is a way of facilitating the meaningful involvement of people with living or lived experience in research and practice; to make sure their needs are adequately addressed,” says Anita. “People who use or are affected by a service or program have a key role in providing expertise, and to participate as equal partners in its design, implementation, review and/or delivery.”

As a result, the outcomes are more likely to be useful, effective and sustainable. “It’s about designing things with the people who will actually benefit from them!”

The Royal Commission recommended that research should be co-designed with older people, industry partners, and government to ensure it is practical and meets their needs and priorities.

Anita believes it is also vital for the co-design approach to also be used throughout the entire reform process.

“The new aged care system in Australia should be co-designed with the workforce and with current and future users of aged care, together with people like clinicians, advocates, lawyers, policy makers, and researchers.”

NARI is Leading Research into Co-Design for People Living with Dementia

Anita says that co-design for people living with dementia has so far been a challenging area.

“Even though the use of co-design is increasing, including in care interventions and in service design and delivery, people living with dementia, particularly those in the later stages, have historically been excluded from co-design, and there is little evidence for which frameworks and methodology are most effective for engaging people living with dementia and their family carers in the co-design process.”

A team at the National Ageing Research Institute (NARI) is working on this across multiple projects because co-design ensures the individuals who will be accessing/benefiting from a service or program will have their needs adequately addressed.

Research at NARI has shown that home care workers and family carers recognise that their knowledge and skills to support people with dementia needs improving, but current education and training opportunities are very limited.

“To address this, we are currently conducting a trial of a co-designed dementia care program for home care workers – the Promoting Independence Through Quality Dementia Care in The Home (PITCH) project. Cathy Roth OAM and Dr John Roth, who are also speaking at the conference, have been a key part of the co-design of the training program, which is currently being tested in seven service providers across Australia.”

Anita says that co-design is fundamentally about accepting and putting into practice the fact that you are never the expert on someone’s life and unique situation.

“Co-design validates the lived or living experience, placing it on equal footing with professional experience. The principles integrate nicely with the concept of person-centred care, which is a key aspect of high-quality health care.

“For me, it means asking about their preferences, their values and their needs, sharing the decision-making, and conducting dementia community-oriented research. It means not only just asking about their needs, but also being respectful and taking their preferences into consideration in decision-making.”

“Ultimately, I think always remembering these principles of co-design and person-centred care keep me, as a clinician-researcher, accountable to those I aim to serve.”

Anita is looking forward to taking part in the National Dementia & Aged Care Reform Conference, which will take place at Crown Melbourne, 23-25 November.

“I love conferences, especially face-to-face conferences!  I think they are a wonderful way to get out from your usual routine and workplace and meet new people in the field. Even though many people may find it difficult mingling, meeting, and networking with people, or find it difficult to find the time, it is really important – especially meeting people from different disciplines and industries.”

“The speakers at this conference include people from advocacy, policy, law, care, and research, together with the dementia community, which is exactly how innovation happens. It gets us out of our silos!”

Don’t miss the chance to engage with Dr Anita Goh at the 12th Annual National Dementia & Aged Care Reform Conference. You can find out more here and follow Anita on Twitter at @dranitagoh

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