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Here you can listen to recordings from a number of our support group meetings. Thank you to the members of the support group who helped make this possible.
- PCA support group meeting February 5th 2016
- Joint carers' support group meeting November 18th 2015
- PCA support group October 16th 2015
- PCA support group meeting June 19th 2015
- PCA support group meeting March 27th 2015
- Joint carers' support group meeting February 26th 2015
- PCA support group meeting November 7th 2014
- PCA carers' meeting September 26th 2014
- PCA support group meeting June 27th 2014
- Joint carer's meeting February 13th 2014
- PCA support group meeting November 8th 2013
- PCA carer's meeting September 20th 2013
- PCA support group meeting July 5th 2013
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February 5th 2016 Support Group Meeting
The theme of this meeting was ‘Creativity in PCA’ and we welcomed a range of presenters to share details of their work:
- Simon Ball a film maker/animator who will be working on the ‘Am I the right way up?’ balance project here at UCL
- Susanna Howard joined us to talk further about her poetry and performance approach (her work also featured in our recent newsletter).
- Pam Turpin spoke about her current study which is looking at the environmental challenges faced by people living with PCA and their caregivers.
- Amelia Carton, a research assistant at the Dementia Research Centre, described the recent ‘Profiles in Paint’ project where people with PCA and other rare dementia diagnoses produced a still life painting from the same objects, in collaboration with the visual artist Charlie Harrison.
- Yeoryia Manolopoulou and Niall McLaughlin discussed their forthcoming project at the Venice Architecture Biennale 2016.
- Harry Macqueen spoke about his upcoming film projects.
November 18th 2015 Joint Carers' Support Group Meeting
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.
October 16th 2015 Support Group Meeting
Chris Lane, Clinical Research Associate at the Dementia Research Centre, UCL, talks current medication that is prescribed for people with posterior cortical atrophy, and new treatments that are being tested in clinical trials.
Medication in posterior cortical atrophy
We also welcomed Robert Howard, Professor of Old Age Psychiatry at UCL, who spoke about mental health, psychiatry and posterior cortical atrophy.
The psychiatry of posterior cortical atrophy
June 19th 2015 Support Group Meeting
Michael Bowen, Director of Research at the College of Optometrists talks about his work on opticians' assessments with people who have dementia, and how this relates to posterior cortical atrophy.
Nada Savitch came to tell us about Innovations in Dementia:
a community interest company that works nationally with people with
dementia, partner organisations and professionals with the aim of
developing and testing projects that will enhance the lives of people
with dementia.
March 27th 2015 Support Group Meeting
Rob Harris (Guide Dogs London Engagement Manager) talks about their mission to give blind and partially sighted people the same amount of freedom to move around London as everyone else.
Prof Sebastian Crutch (Dementia Research Centre, UCL Institute of Neurology) talks about his project to improve understanding of visual impairment in PCA, and how this might be compensated for. Includes a short talk from Mary Pat Sullivan (Brunel University) about the social side of the study. Followed by a Q & A session with Prof Crutch.
February 26th 2015 Joint Carers Support Group Meeting
We welcomed Dr Eneida Mioshi: Department of Psychiatry, University of Cambridge School of Clinical Medicine, who spoke about coping strategies for carers.
We welcomed Angela Sherman who spoke about Continuing Health Care (CHC) funding applications. You can find out more about the organisation she directs at caretobedifferent.co.uk (opens website).
November 7th 2014 Support Group Meeting
Dr Jon Schott presented a talk entitled: "Using imaging and genetics to understand PCA" and Prof Seb Crutch presented an update on his recent work.
September 26th 2014 PCA Carer's Meeting:
Prof. Seb Crutch provided an update on the Stages of PCA document, thank you for your contributions, as well as hosting a Q+A session.
June 27th 2014 PCA Support Group Meeting:
What is lost, what is gained and what stays the same? A talk from Dr Adam Adam Fyffe (Clinical Psychologist, Memory Clinic, East London NHS Foundation Trust).
A Relationship Intervention for Couples Living with Dementia. A talk from Andrew Balfour (Director of Clinical Services, at The Tavistock Centre for Couple Relationships).
February 13th 2014 Joint Carers Support Group Meeting:
Changes in the intimacy of relationships following a diagnosis of dementia
At this meeting, Jane Youell, a researcher at the University of Northampton, gave a talk on the ways in which a diagnosis of dementia may affect relationships between couples, particularly intimacy. You can listen to an audio recording of the talk by clicking this link.
Jane's powerpoint presentation is available for download here.
November 8th 2013 PCA Support Group Meeting: Action for blind people and Scribe
This meeting included a presentation by the founders of a charity called Scribe, which aims to give people who can no longer write the assistance they need to complete writing projects.
We also had a presentation from Action for blind people about the services that they can offer for people with visual impairments.
Please click on the videos below to view the presentations.
8 November PCA support group presentation: Scribe
8 November PCA support group presentation: Action for blind people
September 20th 2013 PCA Carers Support Group Meeting: Stages of PCA, and brain donation
This meeting included a presentation by Zeinab Abdi about how examination of the brain can help scientific research.
Sebastian Crutch introduced a project to improve understanding of the stages of PCA, with the help of support group members.
Please click on the videos below to view the presentations.
20 September PCA carers presentation: Stages of PCA (given by Sebastian Crutch)
In the presentation, Dr Crutch describes an attempt, with the help of members of the PCA support group, to describe the stages that someone with PCA may experience. We are keen to get feedback about these stages from members of the support group. If you would like to, please read this letter explaining the project, and take a look at this document describing the draft stages, returning your comments to Jill Walton or Sebastian Crutch.
20 September PCA carers presentation: Brain donation (given by Zeinab Abdi)
July 5th 2013 PCA Support Group Meeting: Living well with cortical vision loss
This meeting included a presentation by Jane Norman, Director YoungDementiaUK Homes and Matthew Balaam of Oxford Architects who are the firm affiliated to the scheme. ‘Designing accommodation for people with young onset dementia’ .
Sebastian Crutch introduced a planned project which seeks to develop ways of compensating for visual impairment in dementia, including PCA and took questions from the audience.
Please click on the videos below to view the presentations.