Rare Dementia Support runs specialist support services for individuals living with, or affected by, one of five rare dementia diagnoses.

The five rarer forms of dementia that we support are:


Watch out for these upcoming events:
(more details regarding times, location and agenda can be found here: upcoming events)

Monday 6th February 2017 – Joint Carer’s Support Group Meeting
Wellcome Trust, Gibbs Building, 215 Euston Rd, Kings Cross, London NW1 2BE (**please note this venue is not the same as The Hub at the Wellcome Collection, but is the building next door**)
Agenda: Sara Wilcox will be presenting at this meeting. Sara started her career at the Court of Protection managing cases from application to winding up. She then worked in the community in Ealing as an advocate, and then at the Alzheimer’s Society where she was their Legal and Welfare Officer for 5 years. Sara has extensive experience of helping people navigate the legal aspects of the dementia journey – paying for care, managing money, gifting, deprivation of assets, and welfare benefits, for example. Her charity, Pathways Through Dementia, operates a legal helpline and delivers talks and training to a range of audiences. Topics which will be covered during this meeting include: Paying for Care, the role of the Court of Protection – Lasting Powers of Attorney and Deputyship, Welfare Benefits and relevant community care laws such as the Mental Capacity Act, and the Care Act.


Annual FTD Seminar  
Date: Thursday 2nd March 2017
Location: The Basement Lecture Theatre: 33 Queen Square, London. WC1N 3BG.
Time: 9.30am – 4pm

  • An overview of FTD Dr Matthew Jones, Consultant Neurologist, Salford Royal NHS Foundation Trust
  • Sexuality and Intimacy: The impact of a dementia diagnosis Dr Jane Youell, Chartered Psychologist and Dementia Specialist
  • The use of lumbar punctures for the diagnosis of, and research into, dementia and FTD Dr Ione Woollacott, Neurology registrar, Dementia Research Centre, UCL
  • Understanding FTD through blood and spinal fluid measures Dr Jon Rohrer, Consultant Neurologist, Dementia Research Centre, UCL
  • ‘What’s On Your Mind..?’ A question and answer session Prof. Nick Fox, Director, Dementia Research Centre, UCL
  • Interaction-focused Life Story Work in Semantic Dementia Dr Jackie Kindell Speech and Language Therapist, The University of Manchester
  • Frontotemporal Dementia: A personal perspective Shaheen Larrieux

Cost:  (Including lunch) £75 for professionals | £10 family members | concessions available
More dates for 2017….

Friday 24th March 2017 – PCA Support Group Meeting, London

Wednesday 29th March 2017 – Bereaved Carer’s Support Group Meeting, London 

Thursday 27th April 2017 – PPA Support Group Meeting, London

Saturday 13th May 2017 – Joint fFTD and FAD Support Group Meeting, London

Further information regarding location and agenda will be confirmed in due course – please check back.

Our vision is for all individuals with or at risk of one of these rarer forms of dementia to have access to specialist information, support and contact with others affected by similar conditions.

Rare Dementia Support is a fund held by The National Brain Appeal (registered charity number: 290173).