Frontotemporal dementia support

Forthcoming London Support Group Meeting Dates

To allow us to make appropriate provisions, we kindly ask you to confirm your attendance at any of the meetings outlined below. To RSVP, please contact Janette.

We kindly ask all members to note that despite our best intentions, it may at times be necessary to change the dates of planned meetings. Therefore, we hope that the below acts as a guide helping you to pencil the dates into your diaries, but we will always give at least a month’s notice with the finalised dates.

2017

NOVEMBER
Joint Carers Support Group Meeting
Date: Friday 3rd November
Location: 6th Floor, Wellcome Trust, Gibbs Building, 215 Euston Road, London NW1 2BE.
Time: 11:00 – 14:00, arrival from 10:30

2018

JANUARY
FTD Support Group Meeting
Date: Wednesday 17th January
Location: The Hub, 5th Floor, Wellcome Collection, 183 Euston Road, London NW1 2BE.
Time: 11:00 – 14:00, arrival from 10:30

MARCH
FTD Annual Seminar 
Date: Friday 23rd March
Location: 6th Floor, Wellcome Trust, Gibbs Building, 215 Euston Road, London NW1 2BE.
Time: 09:30 – 16:00, arrival from 09:00

MAY
Joint Carers Support Group Meeting
Date: Wednesday 2nd May
Location: 6th Floor, Wellcome Trust, Gibbs Building, 215 Euston Road, London NW1 2BE.
Time: 11:00 – 14:00, arrival from 10:30

JULY
Joint FTD and PPA Support Group Meeting
Date: Wednesday 18th July
Location: 6th Floor, Wellcome Trust, Gibbs Building, 215 Euston Road, London NW1 2BE.
Time: 11:00 – 14:00, arrival from 10:30


Past Support Group Meetings:

Thursday 28th September 2017 – FTD Support Group Meeting, ‘Evening of Music’

In this Awareness Event we aimed to say ‘thank you’ for all that you have taught and shown us over the years about music and FTD. Someone has said that music begins where words end but in the programme we had some of both. Our guest speakers represented the science of FTD, work with patients and living with the disease, standing together under the umbrella of music. We were lucky to have a number of talented young musicians drawn from both the Dementia Research Centre and the Royal Academy of Music who to catered for a range of musical tastes.

Monday 12th June 2017 – FTD Support Group Meeting
The day started with ‘A morning with Prof Gill Livingston’. After lunch Elia Benhamou presented her PhD research project. The day ended with a Q&A session facilitated by Dr Jon Rohrer, Consultant Neurologist at the Dementia Research Centre, UCL.

Thursday 2nd March 2017 – Annual FTD Seminar
Our Annual Seminar was held at the Basement Lecture Theatre in Queen Square. Topics and speakers at this event included ‘An overview of FTD’ by 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, a ‘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 and ‘Frontotemporal Dementia: A personal perspective’, Shaheen Larrieux.

Monday 9th January 2017 – FTD Carer’s Support Group Meeting, London
The agenda included an introduction to the Created Out of Mind” project and resident artists from Emilie Brotherhood, Created Out of Mind Project Manager. After lunch, Lucy Russell , a Research Assistant at the UCL Dementia Research Centre spoke about the LIFTD project she is currently involved in as well as her PhD research project which is looking at eye-tracking  to assess social cognition in FTD.

Monday 26th September 2016 – FTD Carer’s Support Group Meeting
The September 26th FTD carers meeting was held during FTD Awareness Week in the basement lecture theatre at 33 Queen Sq., London, WC1N 3BG from 5.30pm –8.30pm.

At this meeting, Dr Jon Rohrer [Consultant Neurologist, UCL] provided an update on current understanding of FTD and we showed an FTD specific film entitled ‘Looks like Laury, Sounds like Laury’. The film depicts one woman’s journey through the diagnosis.

There was an opportunity to speak to other people affected by FTD during the interval time.

25th January 2016
Bethany Coad is a PhD researcher at Cardiff University and she spoke  to family members about their experiences of empathy changes in FTD and the impact these have had on them and their caregiving experience .

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.

13th July 2015
We hosted a London Carers Meeting on the 13th July on the UCL campus (map – opens new window). We were very pleased to welcome Emilie Brotherhood and Dr Seb Crutch who spoke about their new project. To watch their presentation, view our meeting recordings (opens new page).

Please contact Rare Dementia Support for more information about London support group meetings.