Posterior cortical atrophy support

Regional Meetings:

Regional contact facilitators provide a voluntary contact service from a position of either personal or professional experience of PCA. 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. Please email the regional facilitator(s) directly for more information about their meetings:

Hertfordshire Regional Meetings: are coordinated by Di Garfield and Roberta McKee Jackson: The group meets for lunch on the second Wednesday of every month at 1pm. Once a quarter (March, June, Sept & Dec) there is a speaker programme that starts at 11am, followed by lunch. The venue at the Bushey Country Club, High Street, Bushey, Herts (map – opens new window).

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:
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: 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

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.

For more details and to RSVP, please contact either Eneida: or Sue:

Berkshire Regional Meetings are coordinated by Helen Shepherd: Meetings are held in the Barkham Day Hospital, Wokingham Hospital, 41 Barkham Road, Wokingham RG41 2RE (map – opens new window).

Oxfordshire/Central Regional Meetings are coordinated by Martina Wise: .

Gloucestershire Regional Meetings are coordinated by Richard Southerden: Meetings are held in Stonehouse near Stroud.

North West Regional Meetings: North West regional meetings are coordinated by Andy Tysoe – and Sandie Williams –

Edinburgh & West Lothian Regional Meetings: Alzheimer’s Scotland sometimes facilitates meetings. This is not a Rare Dementia Support affiliated group. Email Julie MacKenzie for more information: 


Please note that you assume full responsibility and risk in the use of information contained on our website, in our newsletters, at support group meetings and in subsequent correspondence. Our support group based correspondence is generic in nature and we are limited in our ability to offer specific advice via this means. We aim to ensure that all information is as accurate as possible but we accept no responsibility for any errors, omissions or inaccuracies, or for any adverse consequences of any kind arising from the use of support group based content. Our regional group facilitators are volunteers. They may refer to regional facilitator guidelines from RDS but are not governed by RDS. They operate independently and with best intention and you assume full responsibility for your contact and engagement with them and in the regional groups they facilitate. Please see the clinician responsible for your care, a social services representative, or your GP if you have specific needs which require attention. Any medical decisions should be taken in discussion with an appropriate health care professional.