South Western Sydney Primary Health Network (SWSPHN) is working on a project that aims to improve the end-of-life journey for people with dementia, their carers and families. The Peace of Mind project (POMP) has received funding from the Greater Choices for At Home Palliative Care measure.
POMP was established in response to the high hospitalisation rates for dementia noted through needs assessment, and predictions of a four-fold increases in dementia prevalence within the SWSPHN region to 2050. Dementia is a terminal illness that a palliative approach to care is appropriate for. It was the second leading cause of death among Australians in 2017, first among females. [1, 2] However, people with dementia can find it difficult to access palliative care.  The Peace of Mind Project has four components that have been developed after consulting with our community members, service providers and health professionals. Work is proceeding on all our components and I want to focus on our education activities.
We have talked to our community and found that dementia is not well recognised as a terminal illness by either community members or health professionals in south western Sydney. Without this important link in people’s minds, it is unlikely that palliative care is considered when assessing care needs.
For people with dementia it is certain that the capacity for legal decision making will be lost as the disease progresses. Advance Care Planning allows the person with dementia to have peace of mind knowing that their wishes have been recorded and someone they trust has been appointed to make decisions and speak for them when they are no longer able to. Community members shared that they are not fully informed about Advance Care Planning and tend to wait for a health professional, especially their GP, to raise the subject. On the other hand, a 2017 survey of GPs found that a third of GPs were waiting for their patients to start the conversation.  This may be why Advance Care Planning is not discussed earlier.
Our community has misunderstandings about Palliative Care. It is mostly thought of as only for people with cancer during the terminal phase of their illness.
To assist our community our project team has been busy hosting well received community information sessions. Guest speakers provided an overview of the types of dementia, the importance of advance care planning conversations and palliative care in the context of dementia. Relaxed morning tea events have been held during Advance Care Planning Week, Palliative Care Week, Dying to Know Day and Dementia Action Week.
Education opportunities for general practitioners on dementia, advance care planning and palliative have also been provided and more are planned for 2020 as a complementary element to our community education. You can learn more about the PEACE of MIND Project on the SWSPHN website.
1. Australian Institute of Health and Welfare (AIHW). Dementia [Internet]. 2019 [updated 2019 Aug 15; cited 2020 Jan 30].
2. Australian Institute of Health and Welfare. Deaths in Australia [Internet]. 2019 [updated 2019 Jul 17; cited 2020 Jan 30].
3. Parker D, Lewis J, Gourlay K. Palliative Care and Dementia (4.84MB pdf). Canberra: Dementia Australia; 2017. Paper no. 43
4. Department of Health. Research into awareness, attitudes and provision of best practice advance care planning, palliative care and end of life care within general practice. Canberra; Department of Health; 2017 Mar 31.
Anne Harley, Integrated Health Coordinator at South Western Sydney PHN