Carers, families, friends and communities

We welcome your feedback on this website, including enhancements you would like us to consider. Email your feedback to or use our website feedback form.

***** Please note that the carer resources included in this website are intended as a guide only. If any of the information or advice found through this website is different from that provided by a specialist palliative care service or other health professional you are involved with, we suggest you check details with your service provider/health professional. We also suggest you familiarise yourself with this website’s full Terms of Use, which includes the advice that “this website is not a substitute for independent professional advice”.*****

Palliative care explained

What is palliative care?
This brochure from Palliative Care Australia explains what palliative care is and what it involves, including care for the person with a life-limiting illness, their friends, family and carers.

http://palliativecare.org.au/what-is-palliative-care/

Living, dying and grieving well: a guide to palliative care
This booklet published by Palliative Care Victoria in collaboration with other organisations provides information about palliative care for the person diagnosed with a life-limiting illness, as well as their carers, family and friends.

http://www.pallcarevic.asn.au/library/for-families-patients/fp-about-palliative-care/

Affirming life: What is a palliative approach – a guide for family and friends with loved ones in aged care
This booklet, developed by a range of organisations including Palliative Care Victoria, is designed to help family and friends understand the palliative approach provided in residential aged care and to encourage their involvement in care.

http://www.pallcarevic.asn.au/library/for-families-patients/fp-carer-support/

Caresearch: Patients, carers and families
Caresearch is a website designed as a knowledge network, to provide information and resources for people wanting to know more about palliative care.

http://www.caresearch.com.au/caresearch/tabid/64/Default.aspx

Palliative care information in community languages

Palliative Care Victoria provides information about palliative care in languages other than English.

You can access information in the following languages from their website:

  • Arabic
  • Chinese (simplified)
  • Chinese (traditional)
  • Croatian
  • Greek
  • Italian
  • Macedonian
  • Maltese
  • Polish
  • Turkish
  • Vietnamese

http://www.pallcarevic.asn.au/families-patients/community-languages/

Caring for someone with a life-limiting illness

Supporting a person who needs palliative care: a guide for family and friends
This guidebook published by Palliative Care Victoria provides a range of information, tips and strategies for family carers of people diagnosed with a life-limiting illness who require palliative care.

http://www.pallcarevic.asn.au/library/for-families-patients/fp-carer-support/

Resources for carers
This pamphlet lists some of the services and assistance available to carers, including income support, concession and benefit cards, domiciliary services and transport.

http://www.pallcarevic.asn.au/library/for-families-patients/fp-carer-support/

Supporting end of life care at home
This guide book published by NSW Health, provides information on what it’s like to be a carer and how to look after yourself, how to access services, how to plan for the needs of the care recipient, how to prepare for their end of life care and what to do after their death. It also includes a contacts and notes section for carers to record important or helpful information.

Please note that some of the details for organisations listed in the state and national contacts section may be relevant only to NSW or other states and territories.

The booklet can be accessed from the Central Coast Local District (NSW Government) website.

http://www.cclhd.health.nsw.gov.au/patientsandvisitors/CarerSupport/cpa/Documents/End_of_Life_GuideBook.pdf

HospiceNet (USA)
The Caregivers section of the HospiceNet website provides information and resources on topics such as how to be a supportive carer and coping with carer anxiety.

HospiceNet is a not-for-profit organisation in the USA that is funded entirely by unsolicited private donations.

http://www.hospicenet.org/html/caregivers.html

CaringInfo (USA)
The CaringInfo website provides information for carers. The website is a program of the National Hospice and Palliative Care Organization in the USA.

http://www.caringinfo.org/i4a/pages/index.cfm?pageid=3323

Looking after yourself

Looking after yourself
This pamphlet published by Palliative Care Victoria lists some suggestions for how to look after yourself when you’re caring for someone with a life-limiting illness.

http://www.pallcarevic.asn.au/library/for-families-patients/fp-carer-support/

How can I support my friend or family member?
This booklet published by Palliative Care Australia provides helpful information on how you can support someone living with a life-limiting illness, including understanding the emotions of their experience.

http://palliativecare.org.au/how-can-i-support-my-friendfamily-member/

Financial and travel assistance for carers

Payments for carers
The Australian Government Department of Human Services website explains the different payments available to carers, based on the eligibility criterion.

https://www.humanservices.gov.au/customer/subjects/payments-carers

Resources for carers
This pamphlet lists some of the services and assistance available to carers, including income support, concession and benefit cards, domiciliary services and transport.

http://www.pallcarevic.asn.au/library/for-families-patients/fp-carer-support/

Victorian Government Carer Card

The Victorian Government run a Carer Card program. Eligible cardholders can access discounts and benefits on offer from a variety of businesses, local government and community organisations. They are also entitled to free travel on public transport on a Sunday plus two return off-peak travel vouchers each year.

http://carercard.vic.gov.au/home

Companion Card

As described on the companion card website, the Companion Card “promotes the rights of people with a disability, who require a companion, to fair ticketing at events and venues. Companion card is a National program administered by the state you live in.”

http://www.companioncard.org.au/

Advance care planning

Additional resources on advance care planning can be found here.

Advance Care Planning Australia 

This website published by Austin Health in Victoria provides extensive information about advance care planning.

http://advancecareplanning.org.au/

Advance Care Yarning (A resource for Indigenous Australians)
This booklet produced by Austin Health looks at advance care planning for Aboriginal and Torres Strait Islander people. It goes through what an advance care plan is and how to complete one.

The booklet can be accessed from the Aboriginal Palliative Care resources section of the Palliative Care South Australia website via:

http://www.pallcare.asn.au/upload/info-resources/aboriginal-palliative-care-resources/Advance_Care_Yarning_ATSI_SA.pdf

Office of the Public Advocate
This Victorian Government website provides information and resources for people wishing to nominate powers of attorney.

http://www.publicadvocate.vic.gov.au/power-of-attorney

My Values
This website published by Barwon Health allows users to create a profile, respond to different questions concerning what they value for their future care and to receive a report that explains what values are important to them.

https://www.myvalues.org.au/

The Conversation Project
This website, developed in partnership between the Institute for Healthcare Improvement and the Cambia Health Foundation (USA), provides information and resources to encourage and help people to express their wishes for their own end-of-life care.

http://theconversationproject.org/

Care in the last stages of life

The process of dying
This pamphlet published by Palliative Care Victoria explains what happens when a person is dying and the signs and symptoms that may be present.

http://www.pallcarevic.asn.au/library/for-families-patients/fp-symptoms/

Understanding the dying process: an information booklet for families
This booklet published by the WA Cancer and Palliative Care Network explains the dying process and the physical and emotional signs and symptoms that may be present. It also explains the practical things that need to be done after someone dies.

The booklet can be accessed from the Health Networks (Western Australia Government) website via:

http://ww2.health.wa.gov.au/~/media/Files/Corporate/general%20documents/Palliative/Patient%20information/UnderstandingTheDyingProcess.ashx

How do we prepare when someone we love is dying

A brochure published by Palliative Care South Australia, covering the topics of planning ahead, the signs and symptoms of dying, helpful information for the time of death and after death has occurred and information on the grieving process and how to seek help during that time.

http://www.pallcare.asn.au/Info-Resources/Articles-and-Documents/PC-Brochures/How-Do-We-Prepare-when-someone-we-love-is-dying

What to do following a death

This page of the Australian Government Department of Human Services website contains information on what to do following a death, including who to notify and how to access assistance such as financial assistance or grief counselling.

https://www.humanservices.gov.au/customer/subjects/what-do-following-death#a8

Grief and bereavement

Understanding grief
This booklet published by Palliative Care Australia explains what grief is, the thoughts, feelings and sometimes physical reactions a person can experience and where to find further help.

http://palliativecare.org.au/understanding-grief/

Grief and loss: help for Aboriginal people going through grief
This booklet produced by Palliative Care South Australia in collaboration with other organisations, talks through the physical and emotional experience of grief, strategies for coping and how to get help.

Please note that some of the services listed in the booklet are relevant only to South Australia.

http://www.pallcare.asn.au/upload/info-resources/aboriginal-palliative-care-resources/1911/Grief%20and%20Loss%20Booklet%20Non%20Regionalised%20AHCSA%20Branded.pdf

Australian Centre for Grief and bereavement booklets
The Australian Centre for Grief and bereavement has published a series of booklets about grief and bereavement. The topics covered include:

  • About grief
  • Grief, anniversaries and significant events
  • How to help someone who is grieving
  • Children and grief (Pre-school, ages five and under)
  • Children and Grief (Primary School, ages 6-12)

The information sheets can be accessed from the Australian Centre for Grief and bereavement website via:

http://www.grief.org.au/ACGB/Publications/Resources_Bereaved/Grief_Information_Sheets/ACGB/ACGB_Publications/Resources_for_the_Bereaved/Grief_Information_Sheets.aspx?hkey=19bfe37f-d79f-4e70-85e7-82b94bca248b

GriefLine (counselling service)
Griefline provides counselling support services free of charge (within Australia) to individuals and families. Griefline also provides online counselling and in-house one on one counselling.

griefline.org.au

The Australian Centre for Grief and Bereavement (counselling service)
The Australian Centre for Grief and Bereavement provides counselling for individuals, children and families after the death of someone close to them.

They can be contacted on 03 9265 2100 or by email on counselling@grief.org.au

Australian Centre for Grief and Bereavement counselling services

Grieflink
A website based in South Australia that provides information and resources on grief.

Please note that Grieflink does not provide a counselling service.

http://www.grieflink.asn.au/

Stories of lived experience

Personal stories, Palliative Care Victoria
Palliative Care Victoria has published a collection of stories from people who have received palliative care, or those who have provided care. The stories are in video and podcast formats.

http://www.pallcarevic.asn.au/families-patients/stories/

The Dreamers
Created by artist and film maker Pippa Wischer, The Dreamers is both a book and an exhibition of personal stories from people receiving palliative care.

More information is available on the Palliative Care Victoria website where the book can be ordered. The book is also available for loan from most public libraries in Victoria.

http://www.pallcarevic.asn.au/families-patients/stories/the-dreamers/

A journey lived
A collection of personal stories written by carers of people with life-limiting illness, produced by Palliative Care Australia.

http://www.palliativecarensw.org.au/pdfs/PCNSW-A-Journey-Lived.pdf

The two of us
Stories from people with a life-limiting illness and palliative care volunteers, published by Palliative Care Victoria.

http://www.pallcarevic.asn.au/library-media/pcv-two-of-us-booklet/

Healthtalk
Healthtalk UK has published a collection of personal stories from carers. The stories are in video and written formats.

http://www.healthtalk.org/peoples-experiences/dying-bereavement/caring-someone-terminal-illness/impact-being-carer

Aboriginal and Torres Strait Islander carers

Palliative care: It’s the beginning of your health care dreaming
This leaflet published by the Victorian Aboriginal Community Controlled Health Organisation (VACCHO) provides a brief explanation of what palliative care is and how to access services in Victoria.

http://www.vaccho.org.au/wd/vapcp/pcr/

Advance Care Yarning
This booklet produced by Austin Health looks at advance care planning for Aboriginal and Torres Strait Islander people. It goes through what an advance care plan is and how to complete one.

http://www.pallcare.asn.au/upload/info-resources/aboriginal-palliative-care-resources/Advance_Care_Yarning_ATSI_SA.pdf

Welcome to our journey
This book, published by the Victorian Aboriginal Community Controlled Health Organisation (VACCHO) contains stories from Aboriginal Victorians who are experiencing their end of life journey or others who have friends and family that have experienced their end of life journey.

http://www.pallcarevic.asn.au/families-patients/aboriginal-australians/

Working carers gateway – Indigenous portal
This section of the working carers gateway website provides information for Indigenous people who are working and caring, including links to stories from other working carers.

http://www.workingcarers.org.au/indigenous-portal

Information for carers (general)

Carers Victoria
Carers Victoria is committed to making carers’ lives better, by providing information and resources and by working to ensure that caring is shared between families, the community and government.

Carers Victoria runs a carer advisory line on 1800 242 636 and their website contains many helpful resources.

http://www.carersvictoria.org.au/

Carers Victoria health factsheets
Carers Victoria has published a series of carer health fact sheets covering topics such as depression, anxiety, sleep problems and back problems.

http://www.carersvictoria.org.au/file-assets/factsheet/carer-health

Carers NSW Factsheets
The fact sheets from Carers NSW discuss a range of topics and include additional ones such as looking after your own wellbeing, talking to health services, financial support and more.

http://www.carersnsw.org.au/how-we-help/factsheets

Carer Gateway
The Carer Gateway website published by the Australian Government, contains information on the experience of carers and the assistance available to them. It also includes disease-specific information.

https://www.carergateway.gov.au/

Carers Recognition Act

The Carers Recognition Act is designed to support carers and provide guidance for services.

http://www.dhs.vic.gov.au/about-the-department/documents-and-resources/policies,-guidelines-and-legislation/carers-recognition-act-2012

Carer life course
The Carer Life Course, published by Carers Australia and Carers NSW identifies six phases of caring that most carers go through and provides information, support and resources.

http://www.carerlifecourse.com.au/interactive/main.htm

Working carers gateway
The working carers gateway is a website that provides information and resources for people who are balancing paid employment and caring.

The website was developed by the Disability and Aged Information Service Inc. (DAISI), in partnership with the NSW Government’s Family & Community Services.

http://www.workingcarers.org.au/

Surviving the maze
Published by Carers Australia, Surviving the maze is a website that contains a series of fact sheets for people caring for an older person.

http://www.survivingthemaze.org.au/BCFC/BCFC.htm

Supporting Families Supporting Young Carers
This booklet is designed for parents of young carers, to help parents understand the experience and needs of young carers.

http://carersaustralia.com.au/storage/Supporting%20Families%20Supporting%20Young%20Carers_2009.pdf

Who cares we do: Information and advice for young carers
An information booklet for young carers, with advice on how to look after yourself and get support.

http://carersaustralia.com.au/storage/Who%20Cares_%20We%20Do_2010.pdf

Young carers
A website for young carers, with advice and information on getting help and support.

http://www.youngcarers.net.au/

Disease-specific information and support for carers

There are a few websites that provide health information on a variety of topics. These sites are listed below.

Better Health Channel
The Better Health Channel is published by the Victorian Government Department of Health and Human Services.

https://www.betterhealth.vic.gov.au/

Health Direct Australia
The Health Direct Australia website is produced under a project that is funded by a collaboration of Australian federal, state and territory governments.

http://www.healthdirect.gov.au/

My Aged Care
The My Aged Care website is published by the Australian Government and designed to help people learn more about and navigate the aged care system in Australia.

http://www.myagedcare.gov.au/

Cancer

Caring for Someone with Cancer
This booklet from Cancer Council Victoria covers a range of information including the practical matters of caring, as well as looking after yourself and seeking support.

The booklet can be accessed via:

http://www.cancervic.org.au/downloads/resources/booklets/Caring-for-someone-with-cancer.pdf

Caring for someone with cancer (Peter MacCallum Cancer Institute)
This section of the Peter MacCallum Cancer Institute (Victoria) website contains a series of PDF booklets for carers. Titles include Caring for someone with cancer, Caring for a cancer survivor: tips for coping, Emotions and cancer: a guide for people with cancer, their families and friends and How can I help: supporting someone with cancer.

https://www.petermac.org/services/cancer-information-resources/caring-someone-cancer

Dementia

Alzheimer’s Australia
The For carers, family members, friends and communities section of the Alzheimer’s Australia website provides links to information on the following topics:

  • Activities for people with dementia
  • Advance care planning
  • Caring for someone who lives alone
  • Coping with behaviour changes
  • Managing changes in communication
  • Personal care
  • Preparing your home
  • Residential care
  • Safety in and around the home
  • Taking care of yourself
  • The later stages of dementia
  • Therapies and communication approaches

https://fightdementia.org.au/national/support-and-services/for-carers-family-members-friends-and-communities

Alzheimer’s Australia (Resources for Indigenous Australians)
Alzheimer’s Australia provides a series of information sheets for Aboriginal and Torres Strait Islander communities, on the following topics:

  • What is dementia?
  • Diagnosing dementia
  • Information for family
  • Memory changes
  • Alzheimer’s disease

https://fightdementia.org.au/about-dementia/resources/aboriginal-and-torres-strait-islander

Dementia: Information for carers, families and friends of people with severe and end stage dementia
This booklet published by the University of Western Sydney, provides information on topics including the different types and stages of dementia, caring for someone with dementia, advance care planning and others. There is also a brief section on looking after yourself as a carer.

http://www.uws.edu.au/__data/assets/pdf_file/0008/7100/Dementia_Booklet_Final2011_PDFfor_web.pdf

Dementia: things to do, activity ideas for carers (A resource for Indigenous Australians)
This booklet published by the Australian Government and the Northern Territory Dementia Behaviour Advisory Service is for carers of an Aboriginal or Torres Strait Islander person with dementia. It provides ideas for activities that encourage interaction, remembering and enjoyment.

http://dbmas.org.au/uploads/resources/Dementia_things_to_do_Activity_resource_for_carers.pdf

The Dementia Journey: Information and Workbook for Planning Ahead
This booklet published by Palliative Care New South Wales in association with Alzheimer’s Australia (NSW), contains information about dementia and advance care planning, including the different options available and what to consider.

https://palliativecarensw.org.au/site/wp-content/uploads/2011/07/PCNSW-Dementia-Workbook.pdf

Heart disease

Heart Foundation
The Heart Foundation provides information about heart conditions, healthy eating and other topics. This includes information for those living with heart disease or people who may have questions After my heart attack.

https://heartfoundation.org.au/

 

Kidney disease

Kidney Health Australia
The Carer support section of the Kidney Health Australia website provides information for carers of someone with kidney disease, including access to respite and financial support.

http://kidney.org.au/your-kidneys/support/patient-and-carer-support/carer-support

Kidney Health Australia – Supportive care
The Supportive care section of the Kidney Health Australia website explains the meaning of supportive care, coping with the emotions and decision-making and planning ahead.

http://kidney.org.au/your-kidneys/support/kidney-disease/supportive-care

An Introduction to Supportive Care of Advanced Kidney Disease
This booklet, published by the Royal North Shore Hospital Renal Resource Centre provides information for patients and families about supportive care for advanced kidney disease. Topics include making informed choices and advance care planning, symptom management and the types of services available.

http://kidney.org.au/cms_uploads/docs/rrc-intro-to-supportive-care-of-advanced-kidney-disease.pdf

Live Now: rethink kidney disease
The Get support for Family and Friends section of the Live Now website (USA) provides information on what it can be like and what to expect when caring for someone with kidney disease. It also links to their Caregiver Good Start Guide.

http://www.livenow.info/GetSupport/ForFamilyFriends.html

Lung disease

Lung Foundation Australia
The Supportive and palliative care section of the Lung Foundation Australia website provides information for patients and families about supportive care for chronic lung diseases.

http://lungfoundation.com.au/patient-support/living-with-a-lung-condition/support-and-palliative-care/

Motor Neurone Disease (MND)

MND Australia
The Information sheets section of the Motor Neurone Disease Australia website provides information for patients, family and friends about MND and the support available.

http://www.mndaust.asn.au/Get-informed/Information-resources.aspx

Caring and MND: support for you
This guide from the MND Association in the UK offers information for carers, including what you can expect when caring for someone with MND, the support available to you and how you can look after yourself. The guide is available in interactive or downloadable PDF versions and can also be downloaded in separate sections.

http://www.mndassociation.org/life-with-mnd/publications-pabmnd/caring-and-mnd-support-for-you/

Parkinson’s disease

Parkinson’s Australia
Parkinson’s Australia provide information about Parkinson’s disease and information sheets on relevant topics, as well as other resources.

http://www.parkinsons.org.au/

Caring at home

Loddon Mallee Carers Kit

The Loddon Mallee Carers kit is available as a series of information sheets and can be accessed via the Loddon Mallee Regional Palliative Care Consortium website.

http://www.lmrpcc.org.au/health-care-workers/resources/

Caregiving demonstration videos – Canadian Virtual Hospice

Caregiving demonstration videos from the Canadian Virtual Hospice are available via the hospice website.

http://virtualhospice.ca/en_US/Main+Site+Navigation/Home/Support/Support/The+Gallery.aspx?type=cat&cid=110f65fd-0447-4e6e-b860-7646e02b997b#video_content_index

Caring safely at Home Project

Various resources from the Caring Safely at Home Project are available from the project page of the Caresearch website.

https://www.caresearch.com.au/Caresearch/tabid/2145/Default.aspx