Peace of Mind project – palliative care for people with dementia

The Peace of Mind project (POMp) aims to improve the end-of-life journey of people living with dementia, their carers, families and health professionals through the implementation of a capacity building intervention.

South Western Sydney PHN (SWSPHN) developed the Peace Of Mind project, funded under the four-year pilot of the Commonwealth - Greater Choice for At Home Palliative Care measure January 2018 to June 2021.

Dementia is a life limiting disease for which palliative care is appropriate. Dementia is increasing in prevalence as the population ages but despite the prevalence of dementia, the condition is not well recognised as a life-limiting illness by community or health professionals in South Western Sydney, and people with dementia can find it difficult to access palliative care.

Commonwealth - Greater Choice for At Home Palliative Care

A snapshot of dementia

In 2021, there is an estimated 487,500 Australians living with dementia²

The number of people with dementia in SWS is expected to increase by 84.2% from 10,513 in 2016 to 19,367 people by 2031¹

Dementia is the second leading cause of death and the leading cause for women²

Aboriginal people over 60 years of age, who live in urban areas, have very high rates of dementia (21%), which is three times higher than the non-Indigenous population¹

At 30 June 2020, people with dementia accounted for 55.1% of all residents in residential aged care facilities in South Western Sydney³

In 2021, it is estimated almost 1.6 million people in Australia are involved in the care of someone living with dementia²

1. SWSPHN Needs Assessment 2022-25. Needs assessment reporting template

2. Dementia Australia. Dementia: key facts and statistics (PDF). Dementia Australia. January 2022.

3. Australian Institute of Health and Welfare. Gen Aged Care Data SWSPHN 22/6/2022

Project capacity building model

As an organisation SWSPHN works to achieve its strategic plan through activities of capacity building, integration, and commissioning, if required, to fill service gaps. The project’s capacity building model was developed following a broad needs assessment, consultation, and appreciative inquiry with project working groups to identify key barriers for people with dementia accessing palliative care and experiencing a good death.

People with dementia are surrounded by four groups:

The person’s family and friends including unpaid carers and the community at large,
Their general practitioners,
Paid carers such as home care and residential aged care workers and the
Health system more broadly as shown.

Each of these groups may influence a person with dementia’s end-of-life journey. By identifying the key barriers (see right) the project has been able to develop capacity building activities that target each of the groups.

Key barriers

Low dementia literacy and stigma
Late diagnosis of dementia
Lack of knowledge and participation in planning in advance for later care needs and wishes
Myths and misunderstanding of Palliative Care
Reduced recognition that dementia is a life-limiting disease
Late recognition of deterioration and palliative needs

Capacity building activities

Community

To assist the community to better understand dementia and palliative care the project provides:
Education sessions in different local government areas throughout South Western Sydney. Topics cover signs and symptoms of dementia, preventative strategies, diagnosis, talking about and planning for the future, and palliative care. These are advertised in our Community Pulse newsletter and on social media.
Information stalls are being provided at regional events relevant to dementia and palliative care. These are advertised in our Community Pulse newsletter and on social media.
Information and links to resources are made available to the community on our Health Resource Directory website
Information and links to resources are made available in a range of community languages on our Health Resource Directory website
A resource booklet of culturally appropriate, respectful, and mindful information. The booklet was made possible through consultation and codesign with the community. We encourage First Nations people to open up conversations about their rights, wishes and how to plan ahead when things change through life. Download the ‘A Journey into Sorry Business’ booklet (PDF | 1.8mb | 23 pages)

General practice

To support GPs in the complexity of providing care to people with dementia Continuing Professional Development (CPD) events are available for GPs and nurses practising in South Western Sydney. Face to face and webinar events are provided throughout the year and advertised on the SWSPHN CPD Event Calendar and weekly CPD email.
HealthPathways offers clinicians locally agreed information to make the right decisions together with patients, at the point of care. One new pathway has been developed and two others updated to support the clinical management of people living with dementia. Relevant HealthPathways include:
- Cognitive impairment
- Dementia
- End-stage dementia
- Palliative Care
- Palliative Care Requests
- Advance Care Planning
- Managing the last days of life
- Bereavement, Grief, and Loss
- Issuing a Medical Certificate of Cause of Death

The project has provided resources to assist GPs with Advance Care Planning (ACP). Due to the progressive decline of cognitive function ACP is crucial to improving the end-of-life journey of people with dementia. ACP should commence early in the course of the disease while the person can be actively involved in expressing preferences and setting care goals, ideally, within a few months of a dementia diagnosis.

Residential Aged Care

To improve equity across the region the project is providing support to small, aged care providers with five or fewer homes in total to benefit from the ability to perform objective, accurate pain assessment for their residents and especially residents who cannot express their pain for example people with advanced dementia.

The South Western Sydney health system

The project working group has members from a range of services and locations from across the region. The working group aims to better integrate the local healthcare system to ensure that it enables access to palliative care for people with dementia.
The committee has published a report of the first phase of the project. The report contains appendices of factsheets for clinicians that focus on the differences in providing palliative care to people with dementia.

POMp pilot project report

Read about the pilot phase of the project. The project, now in phase two: July 2021 – June 2025, continues to implement the capacity building model to achieve its original aim.

Download POMp report

Find out more

If you’d like more information about the Peace Of Mind project email pomp@swsphn.com.au

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