The final report for the Cognitive Decline Health Care (CDPC) project, “Understanding the Journey Better: an investigation of the current ‘state of play’ of the health care journey experienced by people living with cognitive decline and their carers”, proposes a dementia wellness plan to enable consumers to live as well and independently as possible, and to be able to make choices.

Importantly, the project used the consumer’s voice to map and model the data, said lead investigator Professor Anneke Fitzgerald from the Department of International Business and Asian Studies, Griffith University.

“The outcomes of this project provide vital real-life data on how the journey is experienced atpresent – the current state – and how consumers would like to experience it — the future or ideal state,” she said.

The final report’s main recommendation includes the development of a consumer-centred dementia wellness program, which allows consumers and cares to receive information on care and services appropriate to the individual. Such a program is currently being developed and was named: The Future Care (Plan B) program.

Professor Fitzgerald said the benefit of the Future Care Program (Plan B), is that it offers a centralised point of care in the community for assistance in navigating an individual care pathway to access services.

“The program can address items such as individualised care information, Centrelink navigation, financial and legal decision-making, mental and physical wellness and exercise. In addition, participants may be regularly monitored and screened.”

“The development of this program as a result of CDPC funded research is testimony to the CDPC’s main aim of delivering impactful research outcomes,” she said.

Through collecting data on consumers and carers the report outlined an “ideal model”, a dementia wellness plan that is customised to each individual’s journey and need. Primary data used to develop the models was obtained directly from people living with dementia and their carers from a series of workshops.

Data was collected during five two-day workshops, with 24 consumers and carers, across Australia. Patient Journey Modelling Software (Essomenic) was used to visualise the stories, documenting personal experiences and 18 storyboards were produced.

Carers and their partners diagnosed with dementia, part of the consumer group who assisted the project.

The project findings, said report author Associate Professor Joanne Curry, recommends the need for a multi-disciplinary centre of excellence where consumers and their carers collaborate and receive the best guidance and information to navigate through the many services.

The recommendations strongly support the ongoing inclusion of consumers in not only helping to identify what can be improved in the healthcare system but also in providing ideas on how current deficiencies and barriers can be overcome.

Several gaps were identified: a big delay between symptoms and actual diagnosis, little coordination of care across providers, knowledge and clarity of clinical pathways were largely unknown and carer support was reactive rather than proactive.

Three key recommendations were identified from the focus groups study:

  1. Consumers and their carers want to be closely involved in research that impacts them. When reporting on this research at the Annual meeting in 2016, one of the participants publicly expressed “…for the first time I really felt heard.” (Participant 1)
  2. Consumers and their carers want others to have a much better understanding of the experiences of people living with dementia and their carers, in terms of recognition of early symptoms, delivery of diagnosis, allocation of a systems navigator and review/update of an individual wellness plan.

“A regularly updated wellness plan would help alleviate feelings expressed by consumers and their carers that they feel lost in the system, unaware of many services and what they can expect on their healthcare pathway,” Professor Fitzgerald said.

  1. Consumers and their carers want to be involved in identifying opportunities for improvement in current processes in order to optimise effective coordination, integration and delivery of care at the coal-face.

Download the final report, Understanding the Journey Better: an investigation of the current ‘state of play’ of the health care journey experienced by people living with cognitive decline and their carers.