Research Abstract: Free Paper - Oral Presentation Australian and New Zealand Society for Geriatric Medicine Annual Scientific Meeting 2023

End-of-life care journey for people with dementia: understanding the experiences of their carers (#10)

Daniel Wong 1 2 , Zoi Triandafilidis 2 3 , Sally Carr 1 , Daneill Davis 1 , Sarah Jeong 4 , Jacinta Hensby 1 , Nicholas Goodwin 2 3
  1. Central Coast Local Health District, Gosford, NSW, Australia
  2. The University of Newcastle, Gosford, NSW, Australia
  3. Central Coast Research Institute, The University of Newcastle, Gosford, NSW, Australia
  4. The University of Sydney, Sydney, NSW, Australia

Aims: To explore the end-of-life care journey for people with dementia and their carers in their last year of life on the Central Coast, NSW, Australia. To inform development of a co-designed model of end-of-life care for people with dementia and their carers.  

Methods: The mixed-methods study involved three components: 1) surveys, 2) interviews and 3) co-design workshops with carers. Bereaved carers, identified from a linked audit of patients who died with dementia between 2015 and 2019, completed an adapted version of the Views of Informal Carers – Evaluation of Services (Short form) (VOICES-SF)1 questionnaire. These carers were also invited to participate in semi-structured interviews and a co-design workshop. 

Results: 57 carers completed the questionnaire, 11 carers participated in interviews and two carers participated in a workshop. Analysis of the interviews highlighted six themes: 1) discussions about death usually happen at the end; 2) caring is challenging; 3) there are gaps in knowledge and understanding of dementia and end of life; 4) people’s experiences with dementia differ; 5) experiences with services and supports vary; and 6) accessing support is difficult. Analysis of the workshops highlighted three main priorities: 1) information and support for carers; 2) improving communication and collaboration with carers; and 3) care coordination to address the issue of access to care.

Conclusions: These findings provide insights regarding the end-of-life care journey for people with dementia from the point of view of their carers. This will guide the development of a co-designed model of end-of-life care for people with dementia and their carers.

  1. Hunt, K.J., Richardson A., Darlington A.E., and Addington-Hall, J.M. (2019). Developing the methods and questionnaire (VOICES-SF) for a national retrospective mortality follow-back survey of palliative and end-of-life care in England. BMJ Supportive & Palliative Care. http://dx.doi.org/10.1136/bmjspcare-2016-001288