Events

Upcoming Fundraising and Awareness Raising Events:

This page is used to advertise upcoming events that involve fundraising, awareness raising or other support group activities. If you have an event which you think might be of interest, please let us know by emailing contact@raredementiasupport.org.

 

Past Events:

Friday 14th 2017 – PCA Support Group Meeting
To mark the Alzheimer’s Association International Conference taking place in London this year, this meeting had an international angle. The agenda included presentations from Prof Sebastian Crutch (Neuropsychologist, Dementia Research Centre, UCL, and Director, Created Out of Mind) and Dr Jonathan Schott (Reader in Clinical Neurology, Dementia Research Centre, and Honorary Consultant Neurologist at the National Hospital for Neurology and Neurosurgery). Dr Schott presented his findings from a recent study involving 11 international centres investigating the genetics underlying PCA. Further international contributions included a collection of short talks and recordings from organisers and members of  international PCA Support Groups.

Thursday 6th July 2017 – Bereaved Carers Meeting
We held a facilitated discussion with a small group of recently bereaved carers.

Monday 12th June 2017 – FTD Carer’s 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.

Saturday 13th May 2017 – Joint fFTD and FAD 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.

Thursday 27th April 2017 – PPA Support Group Meeting
Julian West and students from the Royal Academy of Music, lead us in a morning of music. After lunch, Dr Jon Rohrer, Consultant Neurologist from the Dementia Research Centre lead ‘An Update and Opportunity for Questions’ session. MedicAlert also attended and provided information for those diagnosed with PPA, their families and carers on MedicAlert’s unique support service and the peace of mind and independence that it offers.

Wednesday 29th March 2017 – Bereaved Carers Meeting
This was the first of these meetings. We spent time gathering information from attendees about what would be most helpful from the group going forward. There was also time for discussion within the group, according to the degree to which people felt comfortable in sharing. We also provided some input on some of the psychological aspects of bereavement and grief.

Friday 24th March 2017 – London PCA Support Group Meeting
The morning presentation was given by Dr Joshua Stott, Alzheimer’s Society Research Fellow and Senior Clinical Tutor, UCL, who discussed the application of Cognitive Behavioural Therapy (CBT) for anxiety and depression in dementia. After lunch, Dr Jonathan Schott, Reader in Clinical Neurology and Honorary Consultant Neurologist, UCL, presented an update in drug treatment for PCA.

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 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. This meeting was recorded (part 1 and part 2) and can be accessed on each disease specific page under ‘recordings’.

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.

Thursday 15th December 2016 – “Music for the Moment”
Free concerts by Royal Academy of Music students at Wigmore Hall, in which people living with dementia, their friends, family and carers were welcomed.

Wednesday 7th December 2016
The Hertfordshire PCA Regional Support Group organised a Christmas Afternoon Tea. 

Monday 5th December 2016 – Oxfordshire and Central Regions  PCA Regional Support Group Meeting
The meeting was led by Martina Wise and the meeting talk was on “Software for Reading” in which Dr Aida Suarez Gonzalez, a Research Associate and Clinical Neuropsychologist at the Dementia Research Centre spoke about the project and the development of a software-based tool to facilitate reading in patients suffering from neurodegenerative conditions that impair vision. You can learn more about the “Facilitating Reading in PCA Project” here: http://www.readclear.co.uk/

Thursday 1st December 2016 – London PPA Support Group meeting
Jill Walton, Support Group Coordinator, introduced Anna Volkmer and Rosemary Townsend (Speech and Language Therapists) who updated the group on forthcoming initiatives. Emilie Brotherhood, Created Out of Mind Project Manager spoke about the project and introduced resident artists Charlie Harrison and Charlie Murphy. After lunch, Professor Jason Warren hosted an informal question and answer forum for support group members. Support group members were also invited to take part in the art workshops.

Friday 11th November 2016 – London PCA Support Group.
Emma Harding spoke about the “In Their Shoes” project which involves running interactive workshops about dementia in secondary schools. Dr Sebastian Crutch, Clinical and Research Neuropsychologist spoke about the “Created Out of Mind” project and introduced the resident artists. There was an opportunity to work directly with the artists or participate in smaller facilitated group discussions. The ‘Created Out of Mind’ resident artists who presented at the meeting were: Janneke van Leeuwen, Charlie Harrison and Charlie Murphy.

Friday 14th October  2016 – Regional PPA Support Group
The Primary Progressive Aphasia (PPA) support group held an informal support group meeting for people with Primary Progressive Aphasia (PPA) and their family, friends and carers. This meeting was also open to people with other diagnoses of dementia, for whom language difficulties were a primary presenting difficultly. We were delighted to welcome Chiltern Music Therapy. See the website for more details: http://www.chilternmusictherapy.co.uk/

23rd September 2016 – Charity performance by David Baddiel for Rare Dementia Support
David Baddiel will host a charity performance of his critically-acclaimed show My Family: Not The Sitcom in aid of Rare Dementia Support, Alzheimer’s Society and The Unforgettable Foundation.
My Family: Not the Sitcom is a massively disrespectful celebration of the lives of David Baddiel’s late mother, Sarah, and dementia-ridden father, Colin. It’s a show about memory, ageing, infidelity, dysfunctional relatives, moral policing on social media, and gay cats. Come and be offended on David’s behalf.

24th September – 1st October 2016 – Frontotemporal Dementia Awareness Week
During World FTD Awareness Week FTD support organisations in at least 10 countries will collaborate on many exciting events and outreach activities. Download a flyer, and see some of our events below.

26th September – Frontotemporal Dementia carers meeting
Dr Jon Rohrer (Consultant Neurologist, UCL) provided an update on Frontotemporal Dementia (FTD) and we showed the film ‘Looks like Laury, Sounds like Laury’. The film depicts one woman’s journey through the diagnosis of FTD. There was an opportunity to speak to other people affected by FTD during the interval.

26th September 10-2pm – Cupcake sale to mark Frontotemporal Dementia Awareness Week
We sold Lola’s cupcakes at the National Hospital for Neurology and Neurology (Queen Square, London) to raise money for Rare Dementia Support and to raise awareness of Frontotemporal Dementia.

27th September 2016 – Young Onset Dementia CPD conference.
The Journal of Dementia Care, in association with YoungDementiaUK, held a certified CPD event which aimed to improve the lives of people with young onset dementia.Young Onset Dementia: Different Impact, Positive Solutions

 

If you’re looking for support group meetings, select the group you’re interested in: