Better Journeys for People with Dementia in Northern Sydney

Introduction: Dementia is a complex and chronic disease and is currently the second leading cause of death in Australia, three in ten people over the age of 85 and almost one in ten people over 65 have dementia. In Northern Sydney, there is projected growth of 23% in the population of people aged 75 years and older between 2011 and 2021, indicating a substantial increase in the number of people with dementia in the region over the next 6 years. There are a wide range of services available in Northern Sydney for people with dementia and their carers; however access and information about support services has been problematic. Information is often fragmented and difficult to find for consumers and Health Care Professionals. A partnership between Northern Sydney Local Health District (NSLHD), Sydney North Health Network, CCNB Ltd and Alzheimer’s Australia NSW was established to improve the journeys of people with dementia in Northern Sydney.

Method: People with dementia (3) and many more carers (20) told us their stories, with key themes from these journeys identified. Over 40 health professionals from across sectors were separately engaged in mapping a number of typical journeys as well as an ideal journey. Gaps and issues were identified and prioritised, with a range of solutions then identified and prioritised. A project plan was implemented by the partnership, including strategies to address identified gaps in information, service access, referral pathways and education. Major project outputs include clarification of referral pathways for General Practitioners, a “Memory Problems?” booklet outlining the range of services available for people with dementia and their carers, distribution of the same across health sectors, government and non-government services throughout the region, a dementia hospital discharge follow–up service commissioned by Sydney North Health Network (SNHN), and a number of education events targeting different groups across the region. Other initiatives in progress being led by SNHN are the development of national quality indicators for dementia care in general practice and a localised dementia pathway for health professionals.

Results: A number of typical journeys for people with dementia and their carers have been mapped, highlighting the range of complex interactions experienced and many opportunities to enable better journeys. The impact of the resulting initiatives are being evaluated through a range of indicators including the timing of referrals to memory clinics in patient’s journeys, unplanned hospital admissions for people with dementia and provider satisfaction. Results are expected to be available by the time of the conference. The NSW Agency for Clinical Innovation is undertaking evaluation of the partnership and it's benefits as part of a statewide program for integrating care for older people with complex health needs.

Conclusions: This partnership has resulted in implementation of a plan which will have a substantially greater impact than if one organisation had undertaken this work alone. The project outputs are practical, sustainable and are expected to improve the journeys of people with dementia and their carers in Northern Sydney.