We all deserve a good death – especially people living with dementia

Dementia is a terminal illness and appropriate palliative care is an essential part of quality care and end-of-life care for people with dementia, as well as their families and caregivers.

People with dementia, their families and caregivers deserve specialist dementia support to plan and manage their end of life with dementia.

Although people with dementia are unlikely to be able to communicate clearly at the end of their lives, and we may never know what they may hear, see, feel and understand at that time, we We need to support and include them in decisions about their care throughout the continuum of illness to the end of life.

People with dementia tell us that they need to trust the system and the people involved in their care because they know they may not have the capacity to express their wishes at the end of life. They rely on their family, support networks and healthcare professionals to ensure they receive quality dementia care and a good death.

Caring for someone with dementia can be rewarding and challenging emotionally, physically and financially. Families and caregivers often report feeling stressed and confused about how and where to access end-of-life care and services, and may feel compelled to make immediate decisions for their loved ones.

Dementia Australia is calling on all political parties to commit to a national dementia palliative care program modeled on an evidence-based, nurse-led palliative care model that has already been successful in South Australia.

The Nightingale Program is the leading specialist dementia palliative care program in Australia and, with the support of a federal funding commitment, could be expanded nationwide.

I acknowledge the support of existing funders, the Rosemary Foundation for Memory Support and the Country SA Primary Health Network Aging Well in Place initiative.

Clients of the Nightingale program have access to specialist nurses who provide palliative care strategies and advice to support people with dementia, their families and caregivers. The focus is on promoting choice and well-being.

Dementia nurses are trained to provide a person-centred approach to enable people with dementia to:

  • Stay home longer and maximize independence
  • Promote quality of life and positive relationships
  • Have a voice in their future care options and decision-making
  • Avoid unnecessary presentations in acute hospital settings
  • Access clinical advice, including comorbidity management, pain management, delirium and palliative care.

The many benefits of the Nightingale program include:

  • Specialist nursing advice
  • Comprehensive and holistic nursing assessment, which will identify current issues and anticipate changing needs
  • Referral to other service providers as needed
  • Continuity of care, offering a single point of contact to guide you
  • Advice provided at home, in residences for the elderly, in community and hospital settings
  • Consultation in the development of advance care directives for future health care needs
  • Education and emotional support to support family and caregivers
  • Interdisciplinary teamwork across health and care networks.

I call on all political parties to commit to expanding this program nationwide to ensure that all Australians living with dementia are supported by trained and qualified staff to provide dementia-specific palliative care.

Improving palliative care for people with dementia, wherever they live, must be an Australia-wide policy priority to provide peace of mind to nearly half a million Australians dementia and the 1.6 million people involved in their care.

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