Posterior Cortical Atrophy (PCA) | Rare Dementia Support

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WELCOME

Welcome to the Posterior Cortical Atrophy (PCA) Support Group, a service which is provided by the charity Rare Dementia Support, RDS, to support people affected by Posterior Cortical Atrophy, their friends, families and healthcare professionals. The pages here provide information about: what PCA is (including causes and symptoms); advice and support, (including strategies for managing at home and useful links to other organisations) and information about previous and upcoming PCA Support Group meetings and newsletters.

ABOUT POSTERIOR CORTICAL ATROPHY

Posterior Cortical Atrophy is a rare form of dementia predominantly affecting the processing of visual and spatial information. Common first signs and symptoms include difficulties with seeing what and where things are (e.g. when driving or reading).

Posterior Cortical Atrophy means ‘back of the brain shrinkage’ and it refers to the progressive loss of neural cells, starting in the occipital and parietal lobes. These changes can be caused by a number of different underlying disease processes – the majority of cases are caused by Alzheimer’s disease (AD) (PCA is sometimes called the ‘visual variant of AD’) but PCA can also be caused by Dementia with Lewy bodies, corticobasal degeneration and others.

Symptoms usually begin before the age of 65 but it can take people a long time to get a diagnosis. Very little is known about what causes PCA to affect some people and not others or how many people are living with it, but research is ongoing.

PCA SUPPORT GROUP TEAM

The PCA Support Group is run by a team based UCL Dementia Research Centre (DRC) as part of Rare Dementia Support, a small charity funded by the National Brain Appeal. Click here for the contact details for the PCA Support Group.

Prof Sebastian Crutch, Neuropsychologist

Emma Harding, Research Assistant

NEWSLETTERS

MEETINGS

We kindly ask all members to note that despite our best intentions, it may at times be necessary to change the dates of planned meetings. Therefore, we hope that the below acts as a guide helping you to pencil the dates into your diaries, but we will always give at least a month’s notice with the finalised dates.

2018

OCTOBER
PCA Support Group Meeting
Date: Friday 19th October
Location: The Hub, 5th Floor, Wellcome Collection, 183 Euston Road, London NW1 2BE.
Time: 11:00 - 14:00, arrival from 10:30

Please contact Rare Dementia Support for more information about London support group 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: herts.PCA@gmail.com. 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 support group meetings at Worcester Woods Country Park, Wildwood Drive, Worcester, WR5 2LG from 10.30am to 12.30pm:

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.

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

Berkshire Regional Meetings are coordinated by Helen Shepherd: Helen@shepherdcharles.com. 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: mrsmartinawise@gmail.com. .

Gloucestershire Regional Meetings are coordinated by Richard Southerden: rsoutherden@aol.com. Meetings are held in Stonehouse near Stroud.

North West Regional Meetings: North West regional meetings are coordinated by Andy Tysoe - andy.tysoe@dementiado.org and Sandie Williams - Sandie.Williams@cheshirewestandchester.gov.uk

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: JMacKenzie@Alzscot.org

Disclaimer:
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.