The march towards de-institutionalisation of residential aged care

Written by Dr Rodney Jilek, Managing Director, Community Home Australia for the Hello Leaders Summer-Autumn Edition.

The landscape of residential aged care worldwide has undergone a significant transformation in recent decades. The move from traditional institutional care to deinstitutionalisation has garnered attention due to its implications for the well-being and quality of life of older adults.

With a proliferation of community-based small-scale models across the globe, is it time that Australia started to invest more freely in these alternate models of care and stopped looking internally for inspiration?

The status quo

We are seeing an increase in aged care “innovation” funding, grants and research in Australia aimed at improving the standards of aged care through organisations such as Aged Care Industry and Innovation Australia (ARIIA) and the Department of Health & Aged Care.

However, the limitation that this funding is only available to current Approved Providers is seen as an impediment to achieving the necessary movement away from instructional thinking and only serves to introduce innovation within the confines of an institutional paradigm.

The Aged Care Quality and Safety Commission’s recent reform conference in Melbourne, which was an ‘invitation only’ event and precluded attendance by anyone not an approved provider, further adds to the insular thinking of the sector, including the regulator, and is seen by many as a direct attempt to limit dissenting thought and open discussion.

The argument against community-based care

For decades there has been an argument that older Australians need a clinically based service model that can only be delivered in an institutional setting.

A major criticism of historical aged care accreditation reforms has been that it has moved residential aged care further away from an integrated social model of care and created a pseudo-sub-acute medical model that sits outside of the mainstream health system, is removed from the community and is neither equipped, staffed nor funded to provide this level of specialist care.

More recent reforms have reinforced this thinking, including the introduction of mandatory 24/7 Registered Nurses, when many experts agree that this is an unnecessary step, is unachievable in the current workforce crisis climate and has come at the expense of other valuable nursing designations such as Enrolled Nurses and a raft of allied health professionals.

Community integrated residential aged care – shattering the myth

Many within my network have followed the story of Community Home Australia and their guest, Garry, who is in many ways the perfect demonstration of what can be achieved outside of institutional aged care. This is his powerful story.

Garry was a resident of a mainstream residential aged care service and had lived there for approximately nine months. During this time, his family had become increasingly concerned about his deteriorating functional status and sought alternate avenues for care.

Due to Garry’s primary diagnosis of Younger Onset Dementia, he was eligible for funding under the National Disability Insurance Scheme (NDIS) and although this was available to the aged care provider, they chose for whatever reason, not to access it. The result was that Garry received the basic minimum standard of care and services that are prescribed by the current legislation. Nothing more and nothing less.

At the time of his transfer to Kambera House, Garry was 67 years old. He had been diagnosed with Younger Onset Dementia and Parkinson’s Disease, both of which had been sub-optimally managed.

He was unable to be mobile, required the assistance of four staff to stand up, was unable to feed himself, was doubly incontinent and was unable to speak. He had not received appropriate Physiotherapy or Speech Therapy during his stay in aged care.

His medications, which included the ‘do not crush’ Sinemet, were being crushed simply because it was deemed too difficult and time-consuming for staff to get him to swallow his medication. He presented in a pseudo-catatonic state with a flat affect and depressed appearance.

After a comprehensive review by his new medical team, gerontological nurses, speech pathologist, dietitian, occupational therapist, pharmacist and physiotherapist, Garry was provided with an individualised program that included nutritional support, interventions to improve independence and function, a new medication regime and daily exercises to improve mobility.

This program was delivered by our specially trained dementia care companions coordinated by a Registered Nurse, all completed in the community and without acute care hospital intervention.

Five weeks after the commencement of this program, Garry was able to stand with the assistance of one team member and had begun mobilising with the use of a walking frame. His speech was returning, and his affect improved dramatically. With assistance to complete toileting tasks, his level of continence improved. It is noted that this was all undertaken during the COVID-19 pandemic.

The program of support encapsulated by the Community Home Model encourages a relationship approach that enables the guest, their loved ones and the support team to build a meaningful connection that surpasses the delivery of clinical care.

The team is empowered and encouraged to love, show love and share in the beauty of their guests’ lives. Families become an integral part of the support program and work together with our team to develop and implement highly individualised programs of support.

Over the next 12 months, Garry continued to improve and was able to mobilise throughout the house independently using his frame and also outside with only supervision and monitoring. He resumed his community-based life, participating in community events and engaging socially with others at Club Kalina, a community-embedded day program for people living with younger onset dementia and cognitive disability. 

Even as his health continued to decline, Garry enjoyed a range of pursuits and activities and remained an active participant in life.

Despite the obvious success of Garry’s reintegration into his community, for the final six months of his life, he faced ever-increasing pressure to return him to institutional aged care based solely on his age and the increasing level of support he required.

There was no consideration of whether his care needs could be met in the community, or where he wanted to be, only that “mainstream aged care services were a more appropriate option”. Garry, his family, and his care team disagreed with this conclusion.

Garry passed away in Kambera House, surrounded by his family and loved ones in November 2023. His end-of-life care, which included the use of multiple syringe drivers and intensive clinical support was delivered in consultation with the specialist palliative care team at Clare Holland House by our Registered Nurses and her amazing companion team at Kambera House. His family were an ever-present part of his life and actively involved in every step of his journey. 

Yes, this level of care comes at a cost, but what value do we attach to the wellbeing and life of a human being? The support that the National Disability Insurance Scheme refused to fund was covered by Community Home Australia and our philanthropic partners.

In conclusion

The transition from traditional institutional aged care towards deinstitutionalisation represents a fundamental shift in the way society approaches the needs of older adults. It requires a movement away from institutional thinking and cannot be successful if the government, its agencies and the sector only engage and consult with the same people who are wedded to institutional care.

The notions of community-embedded care, person-centred care and small-scale residential care are more than just token terms and require more than a change in building structure. They require a fundamental change in thinking.

Garry’s story proves that it can be done. He is the poster boy of change. When you approach aged care with a completely different mindset, anything is possible, and the highest levels of quality care can be delivered within a social model, in the community and without compromising outcomes. The benefits to both older Australians and those who care for them are enormous.

In Loving Memory of Garry Brown
06/10/1953 – 12/11/2023

Dr Rodney Jilek is a Registered Nurse with 30 years of experience in the delivery of clinical care services to older Australians.