Care providers are moving away from traditional institutional care models to provide a better quality of life for people living with dementia

While the onset of dementia can drastically change the lives of patients and their carers, recent reports defining the challenges facing dementia care are leading to a more community-focussed care approach.

In ‘Living with Alzheimer’s disease in Australia’, one of a series of Mind Changers podcasts hosted on the recently launched ADBioHub, Maree McCabe (Chief Executive Officer of Dementia Australia) shares her insights into the key challenges facing Australians affected by Alzheimer’s disease and how Dementia Australia is actively addressing these issues. Lucy O’Flaherty (previous Chief Executive Officer of Tasmanian aged care provider Glenview Community Services) also discusses Australia’s first dementia village – an innovative approach to residential aged care.

Key challenges facing Australians affected by Alzheimer’s disease

An estimated 400,000 Australians are living with dementia and face profound challenges as their condition progresses.¹ Dementia Australia, a nationwide organisation for dementia support, identifies three main issues of concern for people with dementia:²

• Access to timely diagnosis and support
• Quality of care
• Discrimination

CEO of Dementia Australia, Maree McCabe described these challenges: “Right now it can take up to three years to get a diagnosis for dementia…and consumers tell us that accessing support services early improves their understanding of dementia, their relationships and their ability to plan for the future.” Indeed, early diagnosis of dementia remains a challenge, in part due to the fact that many conditions present with cognitive impairment, including depression, vitamin deficiency, thyroid disease as well as side effects of certain medications.¹ Furthermore, without a simple, accessible test to diagnose dementia, the assessment process may vary between medical practitioners.¹

At present, over half of permanent residents in Australian residential aged care facilities have dementia,¹ and many of these also have comorbid conditions, meaning they require a high level of care.¹  With no clearly defined standard of care for dementia in Australia, it is uncertain whether these needs are being adequately met within the current system.²

Dementia Australia also identifies discrimination as a key issue in dementia.² In recent surveys, both patients and carers report various types of discrimination and social exclusion, citing “old friends… stopped calling” or “people in public are embarrassed or uncomfortable around me”.^3,4 While it is difficult to establish whether social isolation is a cause or effect of the illness, having a smaller social network has been shown to be correlated with poorer cognition in patients with Alzheimer’s disease.^5,6

Dementia Australia key priority areas

Dementia Australia has clear goals to address challenges facing those living with dementia:²

1. Significantly reduce the time it takes to diagnose dementia and increase the number of people accessing support.
2. Define dementia specific standards in quality care and support to be implemented across Australia.
3. Reduce discrimination through community awareness and engagement initiatives.

Ms McCabe highlighted that even with limited medical interventions, there are ways to treat dementia and to support people living with the condition. She stressed, “There is a lot that can be done to help people living with dementia to live well…Our purpose is to transform the experience of those impacted by dementia by elevating their voices and inspiring excellence in support and care, free from discrimination.”

Australia’s first dementia village

Helping people with dementia to live well, beyond medical support, is a goal shared by former CEO of Glenview community services, Lucy O’Flaherty. Ms O’Flaherty is an advocate for a holistic approach to dementia care, moving away from institutional medical care in favour of an approach tailored to the individual. She has overseen the opening of Korongee village, Australia’s first care facility based on dementia-enabling principles.

Korongee Dementia Village takes inspiration from emerging facilities around the world shaping dementia care through architecture and design.^7,8 It provides a more home-like experience for residents with the goals of increased social engagement opportunities and enhanced wellbeing. Structurally, Korongee Dementia Village is far from the standard nursing home model,¹⁰ with residents living in houses located on one of four cul-de-sacs that surround the common facilities. On assigning a resident to a house, the individual’s values and life history are considered to achieve cohesive housemate experiences. Ms O’Flaherty explained that by including private, semi-private and communal areas, individual needs are also catered for and residents get a sense of “leaving the house to go to an event”. The social hub includes a cinema, grocery store, salon and wellness centre. Dementia-enabling facilities are built into the landscape of Korongee Dementia Village, with helpful stimuli like colours, textures and unique gardens intentionally placed to help residents find their way. Technology is also used to enable trained staff to be responsive to resident’s needs without being overbearing.

There is growing evidence that this model may lead to improved patient outcomes, with one Australian study comparing standard residential aged care to models with clustered domestic housing, like Korongee Dementia Village, reporting a higher quality of life and lower numbers of hospitalisations in clustered domestic models.⁹ According to Ms O’Flaherty, the response from resident’s families has been overwhelmingly positive. She explained, “We have more visitors at Korongee because it feels nicer… there is meaningful activities and engagement, very reflective of their loved ones wants and desires”.

Learn more about how communities are enhancing life for those living with dementia in the ADBioHub Mind Changers podcast ‘Living with Alzheimer’s disease in Australia’.

References

1. Australian Institute of Health and Welfare 2012. Dementia in Australia. Cat. no. AGE 70. Canberra: AIHW.
2. Dementia Australia (2019). Dementia Australia Annual Report 2018–2019.
3. Joint position statement between Dementia Australia and Carers Australia, October 2020. Carers of people living with dementia and discrimination. Available at: https://www.dementia.org.au/sites/default/files/2020-10/20174_DA_CA_Joint_Policy_Statement_v4.pdf. Accessed August 2021.
4. Alzheimer’s Australia Report 2017. Dementia and the impact of stigma. Available at: https://www.dementia.org.au/sites/default/files/NATIONAL/documents/dementia-and-stigma-2017.pdf. Accessed August 2021.
5. Fratiglioni L et al. Lancet 2000;355:1315–9.
6. Balouch S et al. Int J Geriatr Psychiatry 2019;34:666–73.
7. Sun J & Fleming R. Int Psychogeriatr 2018;30:469–80.
8. Gaugler JE et al. Health Aff (Millwood) 2014;33:650–7.
9. Dyer SM et al. Med J Aust 2018;208:433–8.
10. Fleming R et al. World Alzheimer Report 2020: Design Dignity Dementia: dementia-related design and the built environment; Volume 2: Case Studies. 2020 London, England: Alzheimer’s Disease International.