Recordings

Here you can find videos and recordings of our previous FAD support group meetings.


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

Dr Catherine Mummery, Consultant Neurologist, Dementia Research Centre, spoke about Current Trials in Familial Dementia, Prof Nick Fox, Director of the Dementia Research Centre, led a facilitated discussion on Trial Designs, Prof Sebastian Crutch, Director, Created Out of Mind project, spoke about the Created Out of Mind project: Shaping Perceptions of Dementia Through Art and Science. In the afternoon, members joined the relevant group for a dementia-specific discussion session.


Monday 6th February 2017 – Joint Carer’s Support Group Meeting

Sara Wilcox, CEO from Pathways Through Dementia, presented at this meeting. Topics which were covered during this meeting included: 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 FAD Support Group Meeting: 30th April 2016

Robert and Rosemary Milns, attorneys from Hunters, came to talk about power of attorney and advance decisions. Please find the slides from their presentation below, followed by a video which includes the audio from their talk.


FTD Carers' Support Group Meeting: 23rd May 2016

Dr Ione Woolacott, a neurologist at the Dementia Research Centre, discussed her research at a recent FTD carers’ meeting.


Joint Familial Alzheimer's Disease and Familial Frontotemporal Dementia Support Group: 30th April 2016

Professor Pat Sikes and Dr Mel Hall, University of Sheffield, gave a presentation on 'Diagnosis and beyond: children and young people's perceptions of navigating parental dementia'. You can find their slides below.

Dr Jonathan Rohrer, Dementia Research Centre, provided an introduction and background to issues associated with genetic testing in AD/FTD.

Jo Loxton generously provided a very personal account of her experiences of genetic testing.

Alison Metcalfe presented her research on talking to children and young people about Familial Alzheimer's Disease and Familial Frontotemporal Dementia.


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.

Natalie Ryan and Tammaryn Lashley presented in the FAD-specific session.

In the first joint FAD and Familial FTD Support Groups meeting, Alastair Kent, the Chair of Rare Disease UK and Director of Genetic Alliance UK, spoke about the UK Strategy for Rare Diseases. Natalie Ryan and Tammaryn Lashley presented in the FAD-specific session.

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


Joint Carers' Support Group Meeting: 26th February 2015

We welcomed Angela Sherman who spoke about Continuing Health Care (CHC) funding applications. You can find out more about the organisation she directs at www.caretobedifferent.co.uk

We also welcomed Dr Eneida Mioshi (Department of Psychiatry, University of Cambridge School of Clinical Medicine), who spoke about coping strategies for carers.


Annual FAD Support Group Meeting 2014

Dr Chris Lane gave a presentation on the DIAN-TU treatment trial currently taking place at UCL and internationally. His presentation can be found below.

Nick Meade, Director of Policy from Genetic Alliance UK, gave a presentation on pre-implantation genetic diagnosis (PGD). Find his slides below, and more information about PGD here.

Dr Phil Weston gave an update on FAD research so far, and where future research is going.


Annual FAD Support Group Meeting 2013

Dr Susie Henley, Clinical Psychologist, spoke about the emotional impact of a diagnosis, and the experience of living at risk of developing a genetic condition.