Dementia Research Centre




Familial Alzheimer’s Disease (FAD) Support Group


Joint FAD and fFTD Support Group Meeting: 30th April 2016

We hosted a joint FAD and fFTD Support Group Meeting where Pat Sikes and Mel Hall discussed children and young people's perception of navigating parental dementia, Jon Rohrer discussed the implications of genetic testing, Jo Loxton generously gave a highly personal account of genetic testing and Alison Metcalfe discussed talking to children and young people about FAD/fFTD. Please see recordings and slides below - we apologise but the audio is slightly unclear at points so we have provided the slides alongside where necessary. 

Please view their slides as a pdf. 

Please view Alison's Metcalfe's slides as a pdf.  

Joint Carers' Support Group Meeting: 18th November 2015

We held a Joint Carers' Meeting where Dr Liz Sampson who is a Senior Clinical Lecturer at the Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London joined us to share her expert knowledge on palliative and end of life care in dementia.

Annual FAD Support Group Meeting: 25th April 2015

The annual FAD Support Group meeting took place at UCL on Saturday, 25th April 2015. Alastair Kent and Phil Cleverley spoke during the joint FAD and familial FTD meeting. Natalie Ryan and Tammaryn Lashley presented in the FAD-specific session.

Alastair Kent, the Chair of Rare Disease UK and Director of Genetic Alliance UK talked about the UK Strategy for Rare Diseases.

Phil Cleverley, Chairman of the Association of British Insurers Genetics Panel talked about Life Insurance and the use of genetic information.

Natalie Ryan talked about the role of neuroimaging in better understanding and supporting a diagnosis of Alzheimer's disease.

Unfortunately, we don't have the recording of Tammaryn Lashley's talk from this meeting, but a similar talk about brain donation at Queen Square Brain Bank is available in the fFTD Support Group section.

Please note that you assume full responsibility and risk when attending support group meetings, and also in the use of the information contained on our website, in our newsletters and at support group meetings.