Early Onset Dementia Support Group

 

About the Meetings:
The Early Onset Dementia Support Group was set up in 2011 by the St George’s Hospital Neurology Department. The meetings run every four to six weeks and are designed to provide peer to peer support for people with young onset dementia, their families and supporters in a relaxed environment.

Each support group meeting includes a talk or presentation, a break out session for questions and activities and time to meet other people who are living with early onset dementia, their families and supporters.

 

Where:
The meetings are usually held at St George’s Hospital in the evenings with disabled friendly facilities and refreshments provided.

 

Meeting Dates:

Thur 23rd November 2017
Tue 12th December 2017
Mon 22nd January 2018
Mon 12th February 2018
Wed 14th March 2018
Mon 23rd April 2018
Wed 23rd May 2018
Mon 25th June 2018
Wed 18th July 2018
Tue 14th August 2018

 

The next meeting of the young onset dementia support group will be held on Thursday, 23rd November 2017 in Boardroom H2.8 on the 2nd Floor of the Hunter Wing at St George's Hospital, Tooting.  

We will have two guest contributors:

Emma Allenby from 'Mind for You' which is a company that provides supported holidays for people living with dementia and families. Elaine Eager suggested that we invite 'Mind for You' to a young onset dementia meeting since she and her husband, Paul, very much enjoyed a holiday earlier this year with 'Mind for You'  www.mindforyou.co.uk

Adam Vaughan from Unforgettable, a start-up company developing and marketing products to support people living at home and in care homes with dementia  www.unforgettable.org Adam is 'Head of Innovation' at Unforgettable and a product designer. He is currently working on devices that make music easily accessible to people with dementia and will be bringing to the meeting a number of existing music making machines for people to try out. 

As always, there will be plenty of time for informal discussion. The meeting will start at 7.30pm and run until 9.30pm. Refreshments will be available from 7pm.

The St George's Hospital young onset dementia group is open to anyone diagnosed with dementia at a young age (under 65) and their families. Please do extend an invitation to the meeting to patients and carers you are in touch with who might benefit.

We look forward to seeing you on 23rd November 2017.  

 

Register your Interest:
Please register your attendance here

If you require assistance with the booking procedure or for any other information, please contact info@dementiapathfinders.org or call 0845 257 2250

Alternatively you can contact Barbara Stephens to reply or if you have any questions about the Early Onset Dementia Support Group. You can email: barbara.stephens@dementiapathfinders.org or call: 07786513351

 

For further information on Young Dementia Support please visit:

YoungDementiaSupport.London

St George's Hospital Charity

 

Find out about recent supprt group meetings:

18th October 2017- Charlotte Overton-Hart facilitated a 'Words for Wellbeing' session, focusing on story and poetry reading. Charlotte also demonstrated how to use words and pictures (in different formats) as a means to engage and communicate with people with dementia.

18th September 2017 - Mike Parish and Tom Hughes, led a session on 'My Life Films, and showed the film of Tom's life story, produced by 'My Life Films'. Mike outline the process of making the film and described the benefits for Tom.  Jo Foster, Project Manager with 'My Life Films', spoke about the wider aims of the charity and its current work streams. 
'My Life Films' is a Richmond based charity dedicated to documenting the life stories of people living with dementia in a 30-minute film. The person with dementia and their family are central to the film-making process and the purpose of the film is to offer a personal insight into the life of the person living with dementia, to reinforce identity and reduce sense of isolation, and also to help professional care-workers understand better the character of the person for whom they are providing care. http://mylifefilms.org/ 
Sara Wilcox from 'Pathways Through Dementia' also attended the meeting and was available to answer questions and talk about any legal and financial issues. http://pathwaysthroughdementia.org/

 

10th August 2017 - Guest facilitator for the evening was Ray Watters from Drum With Us http://drumwithus.co.uk/ and drumming was the main activity for the evening. A separate room was available for people who prefered some quiet space to talk. 

20th July 2017 - The theme for the evening was eyesight difficulties and our guest contributors were Dr Paul Ursell, Vicky Rushworth and Dave Smith.
Dr Paul Ursell, who is a eye surgeon at St Helier Hospital. Paul leads on dementia for the Royal College of Ophthalmologists and is Chairman of the Vision 2020 Committee, which is addressing issues of sight loss and dementia. Paul discussed with patients and carers, any issues they had encountered: some recent research has shown that people with dementia often do not seek help for problems with vision as they are not always able to recognise when their eyesight is failing. Paul is interested in developing strategies to overcome the barriers.
Vicky Rushworth and Dave Smith are disability trainers. Vicky and Dave demonstrated how to support and guide a person with sight loss and followed with an opportunity for people to learn this skill and practise.
The meeting started with some gentle breathing exercises and mindfulness, facilitated by Clare Morris, and ended with a short piece of music produced at a recent 'Music for Life' project which some people from the group had taken part in. 

17th May 2017 - Beatrice Allegranti, Dance Movement Psychotherapist, Choreographer & Researcher from the University of Roehampton, joined us for the meeting, together with some other dancers from Beatrice Allegranti Dance Theatre, and professional musician, Robert Howatt.
Beatrice is leading an Arts Council funded participatory dance project with some people from the young onset dementia group and, as part of the presentation, she and the dancers performed a short theatre piece based on this work, which has involved gathering stories about people’s lives and experiences of living with dementia, from the point of view of family members as well as the people with a diagnosis.
During the evening there was an opportunity for people to take part in some dance improvisation accompanied by live music.
Also in attendence was, Richard Mulley who used to attend the support group on a regular basis with his wife, Alison, who had a diagnosis of young onset dementia. Richard and Alison moved to Yorkshire in 2015 to be nearer Alison's family. Richard has been back in touch recently. Alison died in January this year and Richard is moving back to the local area. He volunteered to share his experiences of caring for Alison as her condition worsened. 
Claire O'Neill, Clinical Psychologist from the Cognitive Neurology Service at St George's Hospital also attended the meeting.

19th April 2017 - We were joined by Susannah Howard from Living Words. http://livingwords.org.uk/

15th March 2017- We were joined by Ray Watters from Drum With Us http://drumwithus.co.uk/

25th January 2017- We were joined by Sarah Plummer from 'Young Dementia UK'. Sarah spoke about the National Young Dementia Network that has recently been formed https://www.youngdementiauk.org/young-dementia-network.
Sara Wilcox from 'Pathways through Dementia' facilitated a Q & A session about ‘paying for care', a subject which was relevant to many of the people in the group at that moment. 
Bibliotherapy practitioner, Charlotte Overton-Hart, lead a story and poetry session which was suitable for people living with dementia and family carers. 

28th November 2016 - We were joined for the evening by John Ramsay, Director of a company called Shift 8 Ltd. John demonstrated a new innovation from Holland called Tovertafel that projects images, words and games onto a table top, to prompt enjoyment and interaction for people with dementia, families and carers. John has family experience of dementia. His father was diagnosed with dementia (20 years ago) aged 52. John was only 12 years old at the time. John trained as a corporate lawyer but gave up this profession last year to bring Tovertafel to the UK to bring entertainment and laughter to people living with dementia. 

25th October 2016 - This evening was musically based. Julian West from the Royal Academy of Music, lead a participatory session. Participants were invited to bring along their own musical instrument and Julian was happy to work with any form of musical input. Julian helped to facilitate a support group session the previous year with Caroline Welsh from the 'Music for Life' programme at Wigmore Hall. 
We were also joined by Professor Sebastian Crutch, Chartered Psychologist and Research Associate from the Dementia Research Centre at University College London. Sebastian and Julian are part of the leadership group for a new residency at the Wellcome Collection in Euston Road, called 'Created Out Of Mind', in which Dementia Pathfinders and the Cognitive Neurology Service at St George's Hospital (Dr Peter Garrard) are collaborators. Sebastian and Julian spoke about this new initiative at the meeting on Tuesday and were interested to find out how the residency could help people living with young onset dementia and their families.

29th September 2016 - We were joined by Sara Wilcox from 'Pathways through Dementia', http://pathwaysthroughdementia.org/.  Sara's session highlighted key issues relevant to dementia and addressed common questions such as: ‘How do I arrange Power of Attorney?’, ‘Is my relative entitled to NHS continuing care?’ and ‘What sort of financial help can I get to pay for home care?’

12th April 2016 - We were joined by Susannah Howard from Living Words. http://livingwords.org.uk/

3rd March 2016 - We heard from Zoe Harris, who cared for her husband who had dementia. She shared some of her experiences and insights and more about the ‘Care Charts’ she created to communicate with care staff about her husband’s needs. Part of the session was also led by Circle Dance creative practitioner, Olivia McLennan. Circle Dance has its origins in folk dance and is particularly suitable for people with dementia.

21st January 2016 - Representatives from Royal Trinity Hospice spoke about the services available for people with dementia and families at the Hospice. There was also an interactive yoga and mindfulness workshop facilitated by Clare Morris.

24th November 2015 - The theme for the evening was ‘mind-body balance’ and was led by Marina Rova, a movement and dance psychotherapist. Marina spoke about coping with life changes that affect our physical, emotional, social and cognitive wellbeing. With the help of music, images and props, Marina encouraged the group to explore how our bodies are a resource for healing and creativity.

28th September 2015 - Jo Moriarty, social care researcher at King’s College London, spoke about the Care Act, direct payments, the role of social services and support for carers. She also led a discussion about how we can influence policy makers and commissioners to help increase investment into services that are age appropriate and suitable for people living with young onset dementia.

22nd July 2015 - Solicitor Shaun Parry-Jones led a discussion about Lasting Power of Attorney.