Frontotemporal dementia support

Regional Meetings:

Regional contact facilitators provide a voluntary contact service from a position of either personal or professional experience of FTD. 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.

We currently have regional contacts in Scotland, Yorkshire, Northern region, NorthamptonshireMersey North West, Manchester/Stockport, LiverpoolNorth WalesWest Midlands, NorfolkCentral regions, BirminghamSouth WalesCambridgeHerts/BedsLondon, SurreyKent/Sussex, West Sussex,  Suffolk, South West Regions, and Cornwall. Please click an area for contact details.

Scotland: Please contact Anne Miller – email: milleranne89@googlemail.com or telephone number: 01436 268476, for details of monthly meetings.

Yorkshire: Please contact Rev. Ronald Carter on: 01904 61023, or Ann Squires on: 0113 294 7139, for details of forthcoming meetings.

Northern Region: Please contact Mrs Jillian Ramsay on: 01914 214 069, or mobile: 07708 857 438, for details of forthcoming meetings.

Northamptonshire: Please contact Hilda Hayo on: 07920 819 523, or hhayo@talk21.com, for details of forthcoming meetings.

Mersey North West: Please contact Mrs Mary Dawber on: 01625 879 104. or mary1246@hotmail.co.uk, for details of forthcoming meetings.

Manchester/ Stockport: Please contact Helen Griffiths & Mark Perry on: 0161716 4505, or helen.griffiths@nhs.net, for details of forthcoming meetings details of monthly meetings in the Stockport area.

Liverpool: Please contact Mary Dawber, email: mary1246@hotmail.co.uk, telephone number: 01625 879 104, for details of upcoming meetings.

North Wales: We do not currently have a contact for North Wales. If you are interested in becoming a regional contact for North Wales, please contact Jill Walton.

West Midlands: Please contact Ann Johnson via Rebecca Browne on: 01743 210097, for details of forthcoming meetings.

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.        

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

Central: Please contact Emeline Keown, Young Dementia UK, on: 07909 060 430, or emelinekeown@youngdementiauk.org (working week: Monday, Tuesday and Wednesday) for details of forthcoming meetings.

Birmingham: Please contact Kirsty O’Dwyer on: 07887 800 947 or kross38@hotmail.com, or Pauline Ross 07815 285 876 or polly.ross@btopenworld.com.

Upcoming meetings (2016-2017) are to take place on every 4th Thursday of the month at 10am in the reception area of The Holiday Inn, Junction 7 of the M6, Chapel Lane, off the A34 Birmingham Road, Great Barr, Birmingham, B43 7BG. 

South Wales: We do not currently have a contact for North Wales. If you are interested in becoming a regional contact for North Wales, please contact Jill Walton.

Cambridge: Please contact Val Freestone, email: valerie.freestone@addenbrookes.nhs.uk, tel: 01223 768005, for details of the annual Addenbrookes meeting.

Herts/Beds: Contact Richard Pleydell Bouverie for details, email by preference: richard@lawrenceend.com , telephone number: 01438 833022 for details of forthcoming meetings.

London: Please contact Rob Perry on: 07812 393 968, or robertkperry@live.co.uk for details of forthcoming meetings.

Surrey: To be confirmed. Please check back at a later date.

Kent/Sussex: Please contact Jane Smissen-Bell on: 01323 504156, or email 6bells.jane@gmail.com for details of forthcoming meetings.

West Sussex: Please contact Jill Butcher on 01444 451837, or jillbutcher@onetel.com for details. The next meeting will be on Wednesday 26th April 2017 at 11am, The Harvester Pub, Haywards Heath

Suffolk: We do not currently have a contact for Suffolk. If you are interested in becoming a regional contact for Suffolk, please contact Jill Walton.

South West (Lyme Regis and Lifton): Please contact Penelope Roques, telephone number: 01297 445488, for details of forthcoming meetings. Next meeting scheduled for 3rd December 2016 at the Arundell Arms, Lifton, Devon , P16 0AA. Meet from 12.30pm, buy your own lunch. Please contact Penelope to confirm attendance. [Arundell Arms contact no is  01566 784666]

Cornwall: Please call Cindy on: 01726 71562.