South Western Sydney PHN is a not-for-profit health organisation dedicated to supporting general practitioners, practice nurses and other primary health providers.
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Dementia Australia’s Nightingale Program is a specialist nurse-led support and palliative care service promoting choice, wellbeing and forward planning.
It is available free in locations across NSW, including in South Western Sydney, for people living with advanced dementia, their families and carers.
The program provides palliative care, education, advice and referrals to other services including to specialist palliative care teams for complex end-of-life care.
It works collaboratively with GPs, nurse practitioners, community palliative care teams, existing service providers and all allied health teams.
How it helps
Offering a specialist clinical nurse consultant as the single point of contact, the Nightingale Program develops care strategies to enable people living with dementia to:
stay at home longer and maximise their independence
promote quality of life and positive relationships
have a voice in their future care options and decision making
avoid unnecessary presentations to acute hospital settings
have clinical advice including co-morbidity management, pain management, delirium and palliation
receive advanced dementia care and family support
Its benefits are
specialist, comprehensive nursing assessment and advice
identifying current issues, anticipating changing needs
referrals to other service providers as needed
continuity of care, offering a single point of contact for guidance
consultation in developing advance care planning for future health care needs
education and emotional support for family and carers
The program supports people living in
residential homes
community settings
residential aged care (typically during transition to care or in regional areas)
It is for people who are living with moderate to severe stages of dementia and require palliative support due to a change in symptoms, and in need of palliative support and/or assistance with planning for end-of-life care.
07 February 2025
South Western Sydney PHN (SWSPHN) Integration and Priority Populations Coordinator Kate Noble was selected to join The Dementia 100 panel, a NSW Dementia Expert Advisory Group.
The Dementia 100 panel was created to gather various perspectives on the National Dementia Action Plan 2024-2034 and its implementation in NSW.
The panel consisted of 100 individuals from diverse backgrounds, including people with lived experience, carers, healthcare professionals, researchers and experts from various disciplines.
Kate said the panel was created due to the overwhelming interest from a diverse range of people with lived experience and professional expertise across NSW.
“It was great because it brought together a diverse mix of voices, from a broad range of professions and those with lived experiences,” she said.
“It was valuable to hear perspectives from different sectors and to bring forward ideas on how to make dementia care more responsive and accessible.”
The National Action Dementia Plan 2024-2034 is the Australian Government’s response to the World Health Organisation’s (WHO) Global Action Plan on Dementia, which aims to address the growing challenge of dementia.
According to Dementia Australia, dementia is the leading cause of death for Australian women and the second leading cause of death for all Australians.
In NSW, it is estimated the number of people living with all forms of dementia will increase from 138,200 to 252,800 by 2054.
Australia Institute of Health and Welfare dementia in Australia
The Action Plan includes eight high-level actions aimed at enhancing dementia awareness, decreasing the population’s risk of developing dementia, and improving coordination of services for people living with dementia.
These actions aim to:
promote equity and human rights
tackle stigma, improve awareness and promote inclusivity
empower individuals and communities to minimise risk where they can, and delay onset and progression
improve dementia diagnosis and post-diagnostic care and support
improve treatment, coordination and support for people living with dementia
support carers of people living with dementia
build capability of the workforce to care for and support people living with dementia
improve dementia data, maximise the impact of dementia research and promote innovation
National Dementia Action Plan 2024–2034
“This plan is Australia’s version of the global action plan, and it was essential to have a national response to ensure we are improving dementia care in line with global best practices,” Kate said.
A key highlight of Kate’s involvement was the inclusion of the Greater Choice for At Home Palliative Care Measure in the National Dementia Action Plan, something she had been advocating for.
“One of the things I was most excited about was the mention of the Greater Choice for At Home Palliative Care Measure, in the plan,” she said.
“The Greater Choice for At Home Palliative Care Measure aims to improve palliative care coordination across the health and aged care systems and create links between local hospitals, GPs, palliative care services and aged care providers to improve access to quality palliative care for older people living at home.
“It was great to see the importance of palliative care in dementia care being recognised nationally.”
Kate emphasised people living with dementia need to undertake Advance Care Planning discussions early in the disease progression
“It’s important to have these conversations early, to allow people living with dementia to have control over their choices,” she said.
“This is why including Advance Care Planning in the dementia action plan is so important. It’s about offering people choices—whether they want resuscitation, feeding tubes or other treatments as they approach the end of life.”
Kate’s expertise in dementia care, including her clinical experience and ongoing master’s studies, significantly contributed to her selection for the panel.
“I’ve been involved in dementia care for a long time,” she said.
“I’ve worked clinically in dementia for five years, and I’m doing my master’s in dementia. Which, I think, really helped me stand out and made me an ideal fit for the group.”
With her continued work at SWSPHN, Kate remains committed to ensuring dementia care is integrated into primary health services and includes all populations, especially those in underserved communities.
“I’m proud to have contributed to the National Dementia Action Plan 2024-2034 and seen our local perspectives reflected in the final recommendations,” she said.
“It’s exciting to see the issues I’m passionate about, like palliative care and the integration of dementia services into primary health networks, taken seriously at the national level.”
South Western Sydney PHN’s (SWSPHN) Integration and Priority Populations Coordinator, Kate Noble, was invited to present at the International Dementia Conference at the Hilton Sydney on Thursday, 5 September.
The International Dementia Conference is a biannual conference held over two days with global experts, industry leaders and those with lived and living experiences.
The conference aims to provoke discussions and inspire action among those committed to improving the care of those living with dementia.
This year’s theme, ‘In the Arena’, highlighted the difference between watching the action and being out on the field and, in doing so, giving a platform to those in the arena of complex dementia, palliative care and positive ageing.
Over two days, almost 1,000 people attended the conference to hear from a diverse group of speakers about the latest complex dementia, palliative care and positive ageing research, as well as practice and insights from around the world.
Kate Noble, presenting at the International Dementia Conference
Kate showcased the Peace of Mind Project (POMp), which aims to improve the end-of-life journey for people living with dementia, their carers, families and health professionals by implementing a capacity-building intervention.
POMp was developed by SWSPHN in 2018 as part of the Greater Choice for At Home Palliative Care Measure, which aims to improve palliative care coordination through Primary Health Networks (PHNs).
The Greater Choice for At Home Palliative Care Measure was a four-year pilot program, expected to end in June 2021, but has been extended to 2025 and now includes all 31 PHNs.
During the presentation, Kate spoke about the Capacity Building Model, highlighting the four groups surrounding a person living with dementia: the community, carers, friends and family, general practice, aged care workers, and the South Western Sydney health system.
Kate also highlighted the key barriers reducing access to palliative care for people living with dementia.
“Some key barriers include low dementia literacy and stigma, late diagnosis and late recognition of deterioration and palliative care needs, lack of knowledge and participation in planning in advance for late care needs and wishes, myths and misunderstanding of palliative care and reduced recognition with dementia being a life-limiting disease,” she said.
Other SWSPHN resources and programs were also highlighted during the presentation.
People living with dementia now have access to Easy Read information about their condition.
SWSPHN has developed an Easy Read factsheet about dementia, which is available on our Health Resource Directory (HRD) website.
The factsheet, developed in consultation with a person living with dementia, has information about:
What dementia is
How dementia is detected
How dementia may affect you
How to live well with dementia
Questions you can ask your doctor
Where to find extra support
The aim of Easy Read is to give more people access to information. Easy Read is a way to present information for people who are not familiar with English, or who have low literacy or learning disability. Easy Read’s unique layout and style presents information so it’s easy to understand.
The Easy Read dementia factsheet adds to the resources about dementia already available on HRD. The factsheets have been formulated under strict clinical guidelines, include information about local support and health services, and are available in English, Vietnamese, Simplified Chinese and Arabic.
People living with dementia now have access to Easy Read information about their condition.
SWSPHN has developed an Easy Read factsheet about dementia which is available on our Health Resource Directory (HRD) website.
The factsheet, developed in consultation with a person living with dementia, has information about:
What dementia is
How dementia is detected
How dementia may affect you
How to live well with dementia
Questions you can ask your doctor
Where to find extra support
The aim of Easy Read is to give more people access to information. Easy Read is a way to present information for people who are not familiar with English, or who have low literacy or learning disability. Easy Read’s unique layout and style presents information so it’s easy to understand.
The Easy Read dementia factsheet adds to the resources about dementia already available on HRD. The factsheets have been formulated under strict clinical guidelines, include information about local support and health services, and are available in English, Vietnamese, Simplified Chinese and Arabic.
The Memory Lane Café, run by Dementia Australia, aims to provide a social environment for people with dementia, their carers, family and friends to meet and share information while enjoying some entertainment and food.
You can also chat with trained staff and volunteers from Dementia Australia.
The Memory Lane Café is available in Bankstown and Picton.
Come along and chat to Kate from SWSPHN about advance care planning at our upcoming stalls.
We’ll have stalls at:
Treasure the moment: A dementia risk reduction and wellbeing expo
When: Monday, 18 September, 10am-2pm When: Bryan Brown Theatre and Function Centre and Bankstown Library and Knowledge Centre
Treasure the moment: A dementia risk reduction and wellbeing expo, provides information about how to reduce your risk of developing dementia and how to support a loved one with dementia.
There will be interactive information sessions and workshops with Dr Diana Karamacoska from Western Sydney University, information on support services and community groups in Canterbury-Bankstown and activities such as chair yoga, exercises, and arts and crafts.
When: Tuesday, 19 September, 11am-1pm Where: Gregory Hills Community Centre
Lunch and lifestyle expo provides information on the latest on life leisure, social, health and wellbeing initiatives at a fun interactive expo providing great opportunities to learn and connect to a variety of diverse services, providers and organisations.
When: Thursday, 19 October, 11am-2pm Where: Camden Civic Centre
Carers Pamper Day encourages you to Come along and join Café Connect in celebrating Carers Week. This café will be part of Carers Pamper Day which will include massage, relaxation techniques and demonstrations, pamper product workshops and much more.
Free dementia education workshops will be held in five languages across our region in September, October and November.
As part of our role in the South Western Sydney Dementia Network Group, SWSPHN has worked with Western Sydney University (WSU), local councils and Maridulu Budyari Gamal (SPHERE), to develop and fund the workshops.
The workshops are aimed at anybody from the community, including families and care workers, who support or interact with people living with memory loss or dementia.
The series of three practical and interactive workshops will focus on how people experiencing memory loss can live well in our community, and will be held in English, Vietnamese, Cantonese, Mandarin and Greek.
The new Advance Project Dementia provides practical, evidence-based training and resources which make it easier for aged and primary care professionals to initiate end-of-life conversations and assess the palliative care needs of people living with dementia.
The Advance Project Dementia gives people living with dementia the opportunity to express their needs and preferences for care at the end of life and have access to palliative care and support for their families and carers.
Who has the training been designed for?
The training and resources have been specifically designed for clinicians, managers and care staff in aged and primary care settings
The dementia specific training and resources are informed by the latest research and extensive input and feedback from an expert advisory group, GPs, nurses, allied health professionals, aged and primary care managers, care staff, and people living with dementia and their families.
How you can get involved?
The Advance Project team is looking for champions working in aged care or primary care who are interested in taking part in a train-the-trainer or mentoring program.
The free, flexible and brief interactive training sessions are held online in small groups via videoconference and led by a specialist palliative care nurse.
A national television campaign has been launched to help carers of people living with dementia.
Called Dementia affects us all – and developed by Dementia Support Australia (DSA) – the campaign shines a particular focus on the increasing number of people living with dementia being cared for in their own homes.
According to the Australian Institute of Health and Welfare (AIHW), dementia is the leading cause of disease burden for older Australians.
About 70 per cent of people with dementia live at home with many carers unlikely to be aware of the support services available.
The commercials illustrate the manifestation of dementia behaviours through the narrative of a husband struggling to deal with his wife’s psychological symptoms.
The AIHW estimates that last year there were more than 350,000 unpaid carers supporting people living with dementia. These carers – usually women – often work up to 60-plus hours a week.
DSA has more than 300 trained consultants available 24/7. To contact the helpline, call 1800 699 799.
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