Bringing Peace of Mind through a Dementia and Palliative Care Directory for people living with Dementia

In Australia Dementia is the leading cause of death amongst females whilst it’s the 2nd cause of death amongst males. Despite this there is little public knowledge that dementia is a life limiting illness. The SWSPHN Dementia and Palliative Care Directory was developed to provide information about services and programs at a local, state and national level that not only focus on Dementia, but also on Palliative Care. The Directory was developed as part of the South Western Sydney Primary Health Network (SWSPHN) Peace of Mind Project (POMp), funded under the Commonwealth Greater Choices for at Home Palliative Care measure. POMp aims to improve the end-of-life journey of people living with dementia, their carers, families and health professionals, through the implementation of education, information and resources for community, professional development opportunities and support through health pathways for GP’s.

This directory was aimed towards people living with dementia and their carers who resided in South Western Sydney. Indirectly the directory was also for service providers, primary practitioners, and councils to refer consumers to dementia specific services in the area.

Initially programs were researched through internet searches and speaking to providers and community members at local community events. Prior knowledge of Subject Matter Experts in the area was also utilized to ensure current knowledge was reported on. With 2.1% of the total South Western Sydney population identifying as First Nations compared to 3.4% for NSW, A First Nations section was identified as one important area of need. Once services were compiled the directory was sent to the SWSPHN Community Advisory Committee for feedback. Their recommendations were incorporated into the booklet with the help of the SWSPHN Communication Team. The booklet was then designed with photos, white space and areas to write to allow for easy of understanding and increase health literacy. 

An original print order of 300 books was completed for a soft launch during the 2023 Advance Care Planning Week in March. It was quickly realised that this order would need to be increased due to the popularity of the booklet.  Another 300 booklets were printed for the official launch in conjunction with National Palliative Care Week 2023 in May. To date 450 books have been distributed in the whole of the SWS region. Another 1000 booklets earmarked to be distributed into 2 specific LGA’s within SWS. An online interactive directory was also developed in conjunction with the printed material. 100 Poster were made to promote the online directory and distributed to primary practitioners, clinicians and councils within the area. To date the online version has been downloaded 31 times with 404 visits by 226 users since it was made live.

Our key learning from our directory is that whilst online directories have increased in popularity due to growth in computer literacy and affordability, there is still a place for printed material to improve recall and comprehension. The demand and reprint of the printed booklet has shown this to be true to help people navigate the world after a dementia diagnosis.