Primary progressive aphasia support

Upcoming Meetings:

Date: Thursday 27th April 2017
Location: The Hub on the 5th floor of The Wellcome Collection, 183 Euston Road, London, NW1 2BE.
Time: Please arrive from 10.30am for tea and coffee. The meeting will start at 11am and finish at 2pm.
Agenda: ‘Julian West and students from the Royal Academy of Music, will lead us in a morning of music’.

Julian West is part of the core team to be invited by the Wellcome Trust to take up the 2016-18 residency in The Hub at the Wellcome Collection. The group, which includes scientists, artists, clinicians, public health experts and broadcasters, is examining and challenging perceptions of dementia through scientific and creative experimentation.

Over the last 20 years, Julian West has combined a career as an oboist with developing ground-breaking creative learning and participation projects for many organisations, including Wigmore Hall, Glyndebourne Opera, Britten Sinfonia and Spitalfields Music.

Julian remains at the forefront of the development of this field of work. Alongside a busy freelance career, he is currently Head of Open Academy, the Royal Academy of Music’s creative learning and participation programme, where he lectures on creative music leadership and researches into best practice, as well as devising and leading exciting projects with some of the world’s most talented young musicians.

After lunch, Dr Jon Rohrer, Consultant Neurologist from the Dementia Research Centre will present ‘An Update and Opportunity for Questions’ session.

To RSVP, please email: contact@raredementiasupport.org or J.Junghaus@wellcome.ac.uk

You would be welcome to attend any of the other support group meetings listed under the FTD support group section of this website. Please get in touch for more information. 

 

Regional Meetings:

Regional contact facilitators provide a voluntary contact service from a position of either personal or professional experience of PPA. They are not employed by the support group but may be able to offer an awareness of regional facilities as well as their personal/professional experience on a voluntary basis for members who so wish to make contact. It may be necessary to arrange a mutually convenient time to speak, but they are happy for their details to be made public as listed below.

Norfolk: Eneida Mioshi, Professor of Dementia Care and Sue Jones, Dementia Specialist Nurse are facilitating the following meetings over the Spring period:

All group sessions will be held in the Norfolk Electronic Assistive Technology Centre (NEAT) and will run from 3 – 4.30pm. The NEAT is located at the basement of the Queen’s Building:

University of East Anglia
Norwich Research Park
Norwich
NR4 7TJ

These meetings are primarily for family carers, but we understand that you may need to bring the person you care for with you. If that is the case, please let us know and we will arrange for their participation in a separate activity.

7th April 2017 – Caring for oneself to care for others, Dr Naoko Kishita
5th May 2017 – Brain changes in rare dementias, Prof Michael Hornberger
9th June 2017 Title: To be confirmed, Sue Jones, Dementia Specialist Nurse

For more details and to RSVP, please contact either Eneida: E.Mioshi@uea.ac.uk or Sue: Sue.Jones@uea.ac.uk

Totteridge, High Wycombe: The Primary Progressive Aphasia (PPA) Support Group, in association with Buckinghamshire Healthcare NHS Trust, hold support group meeting for people with PPA and their family friends/carers. This meeting is also open to people with other diagnoses of dementia, for whom language difficulties are a primary presenting difficultly.

Jennie Grassly, Speech and Language Therapist, facilitates these meetings at Totteridge Community Centre, Totteridge Drive, High Wycombe, HP13 6UH from 10.30am – midday on the following dates:

19th May 2017 – Emma Harding, Research Assistant (UCL) will be talking about the current research project she is involved in.
18th August 2017 – Yoga for people with dementia, Clare Morris
17th November 2017 – Dance for people with dementia, Chloe Wilkinson

For more information and to RSVP, please contact Jennie: Jennie.GRASSLY@buckshealthcare.nhs.uk

Worcestershire: Gill Read, Worcestershire Alzheimer’s Society and colleagues are facilitating the following support group meetings at Worcester Woods Country Park, Wildwood Drive, Worcester, WR5 2LG from 10.30am to 12.30pm:

19th June 2017 – Understanding and Coping with Posterior Cortical Atrophy (PCA) and Understanding and Coping with Rare Dementias Affecting Communication
18th September 2017 – Understanding and Coping with behavioural variant Frontotemporal Dementia (bvFTD)
18th December 2017 – Understanding and Coping with Posterior Cortical Atrophy (PCA) and Understanding and Coping with Rare Dementias Affecting Communication

Each session will have at least one expert speaker plus other professionals from Alzheimer’s Society, Worcestershire Health and Care Trust and others who have many years experience supporting people and families affected by dementia.

Although each session will focus on different types of rare dementia, you are extremely welcome to join us for all of the sessions. You may pick up some useful tips and ideas from hearing speakers on the different topics.

There will also be an optional led walk around the Country Park on each date. Please bring suitable clothing and footwear.

If the focus of the session is not on the type of dementia you or your family experience, you are still very welcome to come along for the walk, peer support and the opportunity to talk with staff and other professionals.

The venue has a lovely café where you could stay and buy a lunch afterwards and maybe spend some time with new friends.

There is free on site parking.

For more information, or to RSVP, please email Gill: worcestershire@alzheimers.org.uk or call: 01905 621868 or 07803 116557.