17 August 2022

Dementia impacts almost half a million Australians and close to 1.6 million Australians are involved in their care. The number of people living with dementia is set to double in the next 25 years.

With so many people impacted now and into the future, it is important to clear up some of the misconceptions about dementia.

People living with dementia can live active and fulfilling lives many years after diagnosis.

Despite this, they often experience discrimination.

Dementia Action Week is 19 to 25 September and this year’s theme ‘A little support makes a big difference’ demonstrates how many people living with dementia can continue to live well for many years after their diagnosis.

The campaign provides information and tips to encourage all Australians to increase their understanding of dementia and learn how they can make a difference to the lives of people around them who are impacted – and to help eliminate discrimination.

These include simple and practical tips to:

  • Give a little support to a person living with dementia
  • Give a little support to a carer, friend or family member of a person living with dementia
  • Support someone with dementia to start advance care planning

Find out more about Dementia Action Week

Ten facts about dementia

17 August 2022

Advance care planning is the process of an individual planning the healthcare they would or would not like to receive if they are injured or become seriously ill and are unable to communicate their preferences.

It helps the individuals’ loved ones and doctors know what care they would prefer to receive.

This month, we’re taking a closer look at advance care planning and SWSPHN’s important role in raising awareness and encouraging community and healthcare providers to document these plans.

 

What is advance care planning?

Advance care planning is the process of planning for future healthcare needs. It relates to healthcare an individual would or would not like to receive if they were to become seriously ill or injured and are unable to communicate their preferences or make decisions. This often relates to the care people receive at the end of their life.

Advance care planning gives individuals the opportunity to think about, discuss and record their preferences for the type of care they would receive and the outcomes they would consider acceptable. It helps to ensure loved ones and doctors know what their health and personal preferences are and that these preferences are respected.

Why is it important?

Advance care planning benefits everyone: the individual, their family, carers and health professionals.

  • It helps to ensure individuals receive the care they actually want, it reduces unnecessary transfers to acute care and unwanted treatment
  • It improves ongoing and end-of-life care, along with personal and family satisfaction
  • Families of people who have undertaken advance care planning have less anxiety, depression, stress and are more satisfied with care

Who should have an advance care plan?

Everyone should consider advance care planning, regardless of age or health.

It is particularly important if the individual is:

  • older
  • has a chronic illness
  • has multiple diseases
  • has an early cognitive impairment
  • is approaching the end-of-life

What’s the difference between advance care planning and advance care directives?

An advance care directive is sometimes known as a living will. It’s something an individual creates for themselves and involves documenting their preferences for future care. It can include their values, life goals and preferred outcomes, and directions about care and treatments. An advance care plan is created by someone else on behalf of a person with diminished or no capacity to make decisions for themselves.

To learn more, visit the Advance Care Planning Australia website, or call National Advance Care Planning Support Service on 1300 208 582 for help in creating your plan.

How does SWSPHN raise community awareness about advance care planning?

You only die once workshop

In July we presented an event in collaboration with Wollondilly Council’s Café Connect program and End-of-life Angels. You Only Die Once was an end-of-life planning workshop at Picton. The event gave participants a better understanding of advance planning, where to find information about the subject, and made them feel more comfortable about discussing their end-of-life wishes with family and friends.

SWSPHN also creates awareness of advance care planning by hosting stalls at community events across South Western Sydney such as at the Agency Exchange Day hosted by MDS at Leumeah in June. 

Our team will host further stalls at events in October and November to discuss advance care planning, including at the Dementia Prevention and Wellbeing Expo at Bankstown (27 September);  Carers Pamper Day at Camden (19 October);  Grandparents Day at Oran Park (26 October); and Café Connect at Picton (15 November).

SWSPHN promotes advance care planning through providing information, resources and links on our websites. Information about advance care planning is available for healthcare providers and community on the SWSPHN website.

Information about advance care planning is available on Health Resource Directory in a range of languages. If you’d like more information about advance care planning or our Peace of Mind project, email pomp@swsphn.com.au

09 August 2022

In this month’s Under the Microscope, we’re taking a closer look at advance care planning, SWSPHN’s important role in raising awareness and what you can do to support your patients develop an advance care plan.

What is advance care planning?

Advance care planning is the process of planning for future healthcare needs. It relates to healthcare an individual would or would not like to receive if they were to become seriously ill or injured and are unable to communicate their preferences or make decisions. This often relates to the care people receive at the end of their life.

Advance care planning gives individuals the opportunity to think about, discuss and record their preferences for the type of care they would receive and the outcomes they would consider acceptable. It helps to ensure loved ones and doctors know what their health and personal preferences are and that these preferences are respected.

Why is it important?

Advance care planning benefits everyone: the individual, their family, carers and health professionals.

  • It helps to ensure individuals receive the care they actually want, it reduces unnecessary transfers to acute care and unwanted treatment
  • It improves ongoing and end-of-life care, along with personal and family satisfaction
  • Families of people who have undertaken advance care planning have less anxiety, depression, stress and are more satisfied with care

For healthcare professionals and organisations, it increases confidence they are providing the care preferred by the individual and reduces conflict with families and carers.

Who should have an advance care plan?

Everyone should consider advance care planning, regardless of age or health.

It is particularly important if the individual is:

  • older
  • has a chronic illness
  • has multiple diseases
  • has an early cognitive impairment
  • is approaching the end-of-life

What’s the difference between advance care planning and advance care directives?

An advance care directive is sometimes known as a living will. It’s something an individual creates for themselves and involves documenting their preferences for future care. It can include their values, life goals and preferred outcomes, and directions about care and treatments. An advance care plan is created by someone else on behalf of a person with diminished or no capacity to make decisions for themselves.

To learn more, visit the Advance Care Planning Australia website, or refer your patients to the the National Advance Care Planning Support Service on 1300 208 582 for help creating their plan.

What can you do to support your patients in developing an advance care plan?

GPs and care workers are encouraged to incorporate conversations about advance care planning into routine consultations with their patients, and ensure their patients’ future medical care preferences are uploaded to My Health Record.

The Advance Care Planning Australia website suggests the following triggers and conversation starters.

Online courses, workshops, webinars and support resources are available through Advance Care Planning Australia’s website.

SWSPHN also hosts CPD events relating to advance care planning. Visit our website for information about future events.

The Advance Project  provides practical, evidence-based resources and training to support general practice to initiate advance care planning and palliative care. End-of-life planning (advance care planning) and palliative care are important aspects of care for people living with dementia and their families. The Advance Project has developed new online learning modules and practical resources to make initiating end-of-life conversations and assessing palliative care needs of people living with dementia easier.

How does SWSPHN raise community awareness about advance care planning?

In July we presented an event in collaboration with Wollondilly Council’s Café Connect program and End-of-life Angels. You Only Die Once was an end-of-life planning workshop at Picton. The event gave participants a better understanding of advance planning, where to find information about the subject, and made them feel more comfortable about discussing their end-of-life wishes with family and friends.

SWSPHN also creates awareness of advance care planning by hosting stalls at community events across South Western Sydney such as the Agency Exchange Day hosted by MDS at Leumeah in June. Our team will host further stalls  at events in October and November to discuss advance care planning, including at the Dementia Prevention and Wellbeing Expo at Bankstown (27 September);  Carers Pamper Day at Camden (19 October); Grandparents Day at Oran Park (26 October); and Café Connect at Picton (15 November).

SWSPHN promotes advance care planning through providing information, resources and links on our websites. Information about advance care planning is available for healthcare providers and community on the SWSPHN website.

Information for your  patients  about advance care planning is available on Health Resource Directory  in a range of languages. If you’d like more information about advance care planning or our Peace of Mind project, email pomp@swsphn.com.au

22 July 2022

Twenty Wollondilly Shire residents took the opportunity to learn more about documenting their future healthcare wishes and Advance Care Planning during the You Only Die Once end-of-life planning workshop last Tuesday (19 July).

The workshop was part of the Café Connect Series run by Wollondilly Shire Council and held at the Wollondilly Shire Hall in Picton.

SWSPHN organised the guest speaker Patsy Bingham from End-of-Life Angels and Lifeline staff to provide support at the workshops.

The workshop also gave us the opportunity to connect participants with programs such as Carers Gateway, Carer Help and Australian Death Notification Service, and distribute Advance Care Directive wallet cards.

Participants surveyed after the event overwhelmingly said they now understood more about Advance Care Planning and where to find information about the subject, and that the presentation made them feel more comfortable about discussing their end-of-life wishes with family and friends.

If you’re interested in learning more about Advance Care Planning, SWSPHN staff will be out in about in the community in the next few months to provide information and answer questions.

We will publish details of events on our website in the coming weeks.

 

22 July 2022

A routine blood test in general practice could be the answer to an earlier dementia diagnosis, according to researchers involved in The Markers in Neuropsychiatric Disorders Study (The MiND Study).

The MiND Study is demonstrating how well a blood test for neurofilament light (NfL) works in a large number of people with diverse symptoms, and in broad settings such as primary care.

High levels of Neurofilament light (NfL), a biomarker of nerve cell injury, have been found to distinguish dementia from psychiatric illness and non-dementia, with high-accuracy.

The study’s Chief Investigator, Dr Dhamidhu Eratne, said: “Our ultimate aim is clinical translation: to lead to a simple, routinely available blood test for GPs and other specialists, to help reduce misdiagnosis and delay to accurate diagnosis and treatment, and improve outcomes for patients, their families, and healthcare systems”.

The study has recruited more than 450 participants from across general practices, memory clinics, and medical specialist (neurology, geriatrics, psychiatry) consulting room across.

It continues to welcome referrals from GPs for patients aged 40 to 80, with recent (within five years) cognitive, psychiatric, and/or neurological symptoms.

Eligibility criteria is available online. All that’s needed is a two-minute online referral form.

Find out more

25 February 2022

Advance Care Planning is the process of planning for the healthcare you would or would not like to receive if you are injured or become seriously ill and are unable to communicate your preferences. It helps your loved ones and doctors know what care you would prefer to receive.

Advance Care Planning is for everyone, regardless of age or health. Ideally, you should start planning when you’re healthy – before there’s an urgent need for a plan. Families of people who have undertaken Advance Care Planning have less anxiety, depression, stress and are more satisfied with care. 

If you are interested but not sure where to start, you can call the National Advance Care Planning Support Service on 1300 208 582, Monday to Friday, 9am to 5pm. The service provides free support such as: 

  • Understanding Advance Care Planning
  • Thinking about what matters to you and the are you would prefer
  • Having the conversation with loved ones
  • Choosing or acting as a substitute decision maker
  • How to complete and store documents
National Advance Care Planning Week, 21 to 27 March

During National Advance Care Planning Week, Advance Care Planning Australia is encouraging everyone to start the conversation about what is important to them and to consider their future healthcare preferences. Take part in this initiative by hosting an event, raise awareness and start the conversation about Advance Care Planning.

Find out more

21 June 2021

Aboriginal and Torres Strait Islander people in need of palliative care and their carers can now access easy-to-read information specific to South Western Sydney following the launch of a new booklet in Liverpool on Friday, 11 June.

South Western Sydney Primary Health Network (SWSPHN) partnered with local Aboriginal Elders, the Gandangara Local Aboriginal Land Council and South Western Sydney Local Health District (SWSLHD) to develop the booklet.

A journey into Sorry Business supports Aboriginal and Torres Strait Islander people to share their wishes and preferences for their end-of-life care through ‘sorry business’ – cultural practices and protocols associated with death.

SWSPHN Chief Executive Officer, Dr Keith McDonald PhD, thanked everyone who contributed to the development of the booklet.

“This is an important resource and the first of its kind in our region. We would like to thank our Local Elders, Aunties, Uncles, Brothers, Sisters, their families and the community who have shared their insights on the Aboriginal journey through Sorry Business.”

 

 

 

     

This resource has been developed to provide culturally appropriate, respectful, and mindful information to encourage Aboriginal people to yarn about their rights, wishes and how to plan ahead when circumstances change through their lives.

A Journey into Sorry Business is available at Aboriginal Medical Services and general practices in the South Western Sydney region as a free resource. 

Download A Journey into Sorry Business (updated in 2024)

 

19 March 2021

National Advance Care Planning Week highlights the message that important life choices are planned and not left to chance.

22 to 26 March is National Advance Care Planning Week and Australians, regardless of their age or health status, are being encouraged to make their future healthcare preferences known.

Advance Care Planning Australia organises the annual initiative to challenge people to discuss what living well means to them and to consider who they would want to speak for them if they were too sick to speak for themselves.

Three webinars are being held this week which are free and open to everyone:

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Here to help

Advance Care Planning Australia also has a free advice line to provide support. Call 1300 208 582, Monday to Friday, 9am to 5pm.

 

Conversation starters

Advance Care Planning Australia has nine ideas that can help you start the conversation about what you value and believe in. Read the conversation starters

 

Find more information

For information about National Advance Care Planning Week, including the opportunity to sign up for a free information pack, visit advancecareplanning.org.au/acpweek

29 May 2020

SWSPHN is working with Kelly Arthurs, the clinician mentor from The Advance Project, to present a one-hour webinar to support GPs to promote a team-based approach to initiating advance care planning and palliative care in everyday practice. The webinar will be delivered through Microsoft Teams on Wednesday, 24 June, 6pm to 7pm. Please email Anne.Harley@swsphn.com.au if you would like to participate in the free event. You will be sent a link to join the webinar. CPD: The webinar can be self-logged as professional learning.

 

What is The Advance Project about? 

1. First of all, it’s about better healthcare.

The Advance Project is all about enabling better primary health care, particularly in the areas of advance care planning and palliative care. 

2. It’s specifically designed for general practices.

Its goal is to support GPs, nurses and practice managers in Australian general practices. It wants to promote a team-based approach to initiating advance care planning and palliative care in everyday general practice. 

3. How does it work?

It’s a practical toolkit of screening and assessment tools, and a training package, designed specifically for GPs, nurses and practice managers. It includes a range of resources, such as eLearning, mentoring and support for implementing the resources into your clinical practice. And it’s aimed at better care for people in the Australian community who are either older and/or chronically ill. 

4. It’s free!

There is free online training and individual tele-mentoring available with an experienced palliative care nurse. The training counts towards your profession’s CPD requirements. 

5. Who is behind it?

The Advance Project is funded by the Australian Government Department of Health, with training endorsed by the Australian Primary Health Care Nurses Association (APNA), accredited by the Royal Australian College of General Practitioners (RACGP) and Australian College of Rural and Remote Medicine (ACRRM), and delivered by a national consortium led by HammondCare.

13 March 2020

Did you know?

  • Almost 50 per cent of people will be too unwell to make their own end-of-life medical decisions?
  • Less than 15 per cent of Australians have documented their preferences in an Advance Care Directive?

National Advance Care Planning Week, 23 to 27 March, encourages all Australians, regardless of their age or health status, to make their future healthcare preferences known.

An important part of healthy ageing is making informed choices about your healthcare.

Advance care planning gives you options and a say in your medical decisions if you are ever too unwell to speak for yourself. It is a heartfelt conversation and a personal statement that goes beyond filling in a form.

Challenge yourself to start a difficult conversation with loved ones about what living well means to you.

Find out more about Advance care planning.