Caring, Connecting, Changing - Stories of Dementia and Research

In this episode we welcome three GBHI Fellows: guest host and filmmaker Michelle Memran, documentary photographer Alex Kornhuber, and social sciences academic Dr Sonata Mačiulskytė. Together they explore the ways in which caregiving, creativity, and change come together in the context of dementia. Drawing on their experiences of supporting loved ones with dementia, they reflect on how these personal journeys have influenced their professional work and shaped their understanding of the disease. The discussion touches on the early signs of dementia, the transformation of relationships through caregiving, and the importance of early diagnosis. The conversation also considers the significance of documenting caregiving experiences and the need to reshape the narrative around dementia. By sharing stories and creative perspectives, the guests highlight how shifting this narrative can foster greater awareness, empathy, and understanding. -- Takeaways • Caregiving is a deeply personal journey that shapes professional work. • Recognising early signs of dementia can be challenging but crucial. • Relationships with loved ones can transform through the caregiving experience. • Early diagnosis can lead to better care and understanding. • Documenting caregiving experiences can foster connection and awareness. • Language and narrative around dementia need to change for better understanding. • Sharing personal stories can help others feel less alone in their caregiving journey. • The experience of dementia is unique to each individual and family. • Advocacy for brain health should start early in life. For more information on the Atlantic Fellows for Equity in Brain Health Program visit: https://www.gbhi.org/ -- Find more information on our guests, and a full transcript of this podcast on our website at: https://www.dementiaresearcher.nihr.ac.uk/podcast -- The views and opinions expressed by guests in this podcast represent those of the guests and do not necessarily reflect those of NIHR Dementia Researchers, PIA membership, ISTAART or the Alzheimer's Association. -- Follow us on Social Media: https://www.instagram.com/dementia_researcher/ https://www.facebook.com/Dementia.Researcher/ https://www.twitter.com/demrescommunity https://www.linkedin.com/company/dementia-researcher https://www.bsky.app/profile/dementiaresearcher.bsky.social -- Download and Register with our Community App: https://www.onelink.to/dementiaresearcher