Conversations with Experts: Bridging Scientific Knowledge and Lived Experience in Rare Dementia
In this series, RDS members with lived experience of a rare dementia we filmed in conversation with specialist healthcare professionals and researchers. Each conversation will be very different; reflecting the unique experiences of each person taking part.
What does it mean to be an ‘expert’?
Typically, we think of expertise as something gained through years of study and/or professional experience. But this definition neglects expertise gleaned through lived experience. Taking rare dementia, for example, clinical and scientific expertise can only get you so far – to truly understand these conditions, insights into the lived experience of people affected are completely invaluable.
This was the philosophy behind Conversations with Experts, a project led by Rare Dementia Support (RDS), and funded by the Dementia Trust.
Dr. Chris Hardy
Senior Research Fellow, UCL
The terms dementia and Alzheimer’s disease are often used interchangeably, but actually dementia is an umbrella term – Alzheimer’s is the most common cause of dementia, but there are many other diseases and conditions that can lead to dementia. That’s where Rare Dementia Support comes in – we offer specialist social, emotional and practical support services for individuals living with, or affected by, a rare dementia diagnosis.
Supporting Rare Dementias
The rare dementias we currently support include posterior cortical atrophy, primary progressive aphasia, frontotemporal dementia, familial frontotemporal dementia, familial Alzheimer’s disease, Lewy body dementia and young-onset Alzheimer’s disease. Our vision is for all individuals with, at risk of or supporting someone with one of these forms of dementia to have access to information, tailored support and guidance, and contact with others affected by similar conditions.
We designed the Conversations with Experts project with the hope of capturing meaningful dialogues between two groups of experts: those with clinical and/or scientific expertise in rare dementias, and those living with or caring for someone with these conditions. Our aim was to overcome traditional hierarchies and respect both kinds of expertise as equally valid and important.
Hearing from lived experience experts
“The result was some amazing conversations featuring insightful, respectful questions from both sides and it was humbling to see the clinical/scientific experts learning so much from the lived experience experts. The recordings have served as valuable resources for people affected by different rare dementias and at different stages of their journeys”
Over the course of the series, we heard from lived experience experts including partners of people with posterior cortical atrophy, the daughter of a gentleman with a diagnosis of semantic variant primary progressive aphasia, two people living with different forms of primary progressive aphasia themselves, and partners of people with conditions falling within the frontotemporal dementia spectrum. Our clinical/scientific experts included our very own Rare Dementia Support Service Lead and members of her team, Professors of Neuropsychology and Neurology, and a Consultant Speech and Language Therapist.
The result was some amazing conversations featuring insightful, respectful questions from both sides, and it was humbling to see the clinical/scientific experts learning so much from the lived experience experts.
The recordings have served as valuable resources for people affected by different rare dementias and at different stages of their journeys – we estimate that up to two thousand people will have seen at least one of the videos, and they remain valuable resources for professionals, caregivers, and individuals affected by rare dementias.
We are incredibly grateful to the Dementia Trust for their support – without this, this project would not have been possible.
Visit Rare Dementia Support to view the series of conversations or watch the individual conversations below;
Reflections on caring for someone with PCA (posterior cortical atrophy)
Caring for somebody with semantic dementia as a young adult
Living with a diagnosis of mixed primary progressive aphasia
Living with diagnoses of Progressive Non-fluent Aphasia and Progressive Supranuclear Palsy
