Oral Presentation Australian and New Zealand Society for Geriatric Medicine Annual Scientific Meeting 2026

Experiences of research participation for persons living with dementia with Lewy bodies and their study partners  (#18)

Anni South 1 , Joanne Tropea 1 2 , Jenny Yu 1 3 , Paula Loveland 1 3 , Kai Sin Chin 1 3 , Nawaf Yassi 1 3 , Rosie Watson 1 3
  1. Department of Aged Care, The Royal Melbourne Hospital, Parkville, Victoria, Australia
  2. Department of Medicine, The Royal Melbourne Hospital, The University of Melbourne, Parkville, Victoria, Australia
  3. Departments of Medicine and Neurology, Melbourne Brain Centre @ The Royal Melbourne Hospital, University of Melbourne, Parkville, Victoria, Australia

Aims 

There is a recognised need to improve participation of persons living with dementia with Lewy bodies (DLB) in research, including in meaningful co-design. The Lewy Body Study is an Australian longitudinal cohort study of DLB. In this interview-based, qualitative sub-study, we aimed to explore the lived experience of Lewy Body Study participants. 

Methods 

We conducted eight in-depth, semi-structured interviews with study participants, including persons diagnosed with probable DLB (n=4) and their study partners (spouses, n=4). We explored participants’ experiences of living with DLB and of taking part in research. We undertook a six-phase Reflexive Thematic Analysis of the dataset1 

Results 

There were five inter-related themes, entitled: Theme 1: “Like you’re on your way out”: DLB diagnosis as an existential challenge. Theme 2: “It is dementia with Lewy bodies and it is different”: DLB poses unique challenges. Theme 3: “I think that’s the right attitude to have”: Seeking to be proactive. Theme 4: “Today was tough”: research participation is demanding. Theme 5: “Just being involved is a very positive thing”: Research participation can support agency.  

Our analysis identified that participants’ experiences of taking part in research cohered with the proactive stance they sought towards their DLB diagnosis.  

Conclusion 

Our study adds to an emerging literature on the lived experiences of DLB and of dementia research participation. We emphasise the feasibility and value of seeking input on the research process from persons living with dementia  

  1. 1. Virginia Braun, Victoria Clarke. Thematic Analysis: A Practical Guide. Sage; 2022.