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Rare Dementias

Dr Chris Hardy of the Institute of Neurology at Queen Square in London has been awarded a grant to redefine “expertise” in rare dementia. The plan is to record fifteen conversations between disease and or care experts and people with lived experience of a rare dementia. Experts will vary in terms of background, type of expertise and specific dementia. There are some new ways of working now that we are all affected by the response to Covid. The project has already spoken to several people about participating, and 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.

Lived experience experts will be identified via the Rare Dementia Support groups and disease/care experts will be staff working for RDS and in the Dementia Research Centre, UCL. Each conversation will be two-way, with the staff experts learning from the lived experience experts, and vice versa.
Our lived experience experts will 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