Rare Dementia Support
Disruption Awards 2021
Dr Chris Hardy of the Institute of Neurology at Queen Square in London was awarded a grant to redefine “expertise” in rare dementia.
The award was to record fifteen conversations between disease and or care experts and people with lived experience of a rare dementia. Experts vary in terms of background, type of expertise and specific dementia.
There were some new ways of working after we were all affected by the response to Covid.
The project started by speaking to several people about participating. The benefit of the recordings taking place with people sitting in front of their own computers is that there are fewer issues around travel and logistics associated with filming everybody in the same location. Taking part without the significant disruption of travelling to an unfamiliar place is easier.
Lived experience experts were identified via the Rare Dementia Support groups and disease/care experts came from staff working for RDS and in the Dementia Research Centre, UCL. Each conversation was two-way, with the staff experts learning from the lived experience experts, and vice versa.
Our lived experience experts either have a diagnosis of rare dementia themselves or care for or about somebody who does. The rare dementias we hope to cover include:
Lewy Body dementia
Familial frontotemporal dementia
Semantic dementia
Progressive nonfluent aphasia
Posterior cortical atrophy
Behavioural variant frontotemporal dementia
Familial Alzheimer’s disease
Mixed primary progressive aphasia
Logopenic aphasia
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