Dementia Australia's feedback

Thank you for the opportunity to provide input to the development of the Palliative Care Services Plan and Model of Care.

Dementia is a terminal illness, with a trajectory of steady and gradual decline over a number of years. Comprehensive palliative care for people living with dementia should be available when and where it is needed, including in community or home-based care, residential aged care, hospice care, and acute care settings.

People living with dementia, and their carers and families as appropriate, should be involved as early as possible in decision making around the delivery of palliative care. A flexible model of care needs to deliver the right care, at the right time, in the right settings, to meet the changing needs of people living with dementia, as the disease progresses. People living with dementia should be supported to die in their own home where they have identified a wish to do so, supported by family and carers.

Health professionals and aged care staff should have access to additional training in palliative care for people with dementia, to provide appropriate care. Clinical Nurse Consultants who specialist in dementia palliative care would increase workforce capacity to meet the unique palliation needs of people living with dementia.

The Nightingale program in South Australia is an example of a person-centred model of care provided by specialist nurses and allied health professionals for advanced dementia care, promoting choice, wellbeing and future planning and supporting people to stay at home longer.

Dementia Australia has a range of resources available which outline key elements of a high quality, person-centred palliative care model for people living with dementia. We recommend that SA Health consult with the following resources:

• Policy Statement: Palliative Care and Dementia (Dementia Australia and Palliative Care Australia)
• Dying Well Improving Palliative and End of Life care for people with dementia (Dementia Australia)
• Palliative Care (Dementia Australia)
• https://www.dementia.org.au/support/support-in-your-region/south-australia/nightingale-program

We would be happy to participate in any future consultation on palliative care in South Australia.