How the PCA rare dementia support group makes a difference

Back in 2013 the first of what has turned out to be many supportive, regional PCA carer group meetings was held, to give carers with a loved one with a PCA diagnosis the chance to share what they were going through with like-minded people.  One significant benefit of this group was that it meant many carers no longer had to travel into central London and could meet at a venue more local to them.

We have been fortunate enough to meet and speak to Helen Shepherd and Maggie Williams, both of whom had partners with PCA, and both of whom have been leading this remarkable support group as volunteers for many years. We spoke to them to learn more about the group, what it offers to carers and how it has helped them.

Firstly, Helen and Maggie, thank you for participating in this interview. Are you able to explain what PCA is and how it differs from the general public’s understanding of dementia?

Helen: PCA stands for Posterior Cortical Atrophy. It is a rare form of dementia that affects the back (posterior) of the brain, the part that deals with visual and sensory processing. It’s generally diagnosed in those from 50 to 65.

Maggie: In my late husband’s case his memory remained pretty sharp, but his visual and motor skills were very impaired from the outset.

Helen: Yes, if you mention ‘dementia’ most people will assume that it is to do with memory loss. Like Maggie’s husband my husband’s memory remained intact, but his ability to read, write, recognise numbers, money and road signs were compromised quite early on.

Maggie: Eventually my husband was totally reliant on others for all personal care and was registered partially sighted, but he was virtually blind. Because it’s such a complex illness it is often very hard to get a diagnosis, it was our optician who picked up a problem and referred us to an Ophthalmic Surgeon.

When did the PCA support group begin, why was it so important and how did you benefit from being members?

Helen: I started the PCA support group in 2013 with the support of YPWD.  There is something very special about meeting a group of people with the same diagnosis.  Very little explanations are required, ‘they just get it’.  You have a bond straightaway you feel comfortable to talk openly and share experiences, and this is good for the person with the diagnosis and the carer learning coping strategies, discussing perhaps changes to be made at home to make some of the transitions easier to cope with.

Maggie: It was great to have the local support as we were no longer able to make the journey to the Rare Dementia Group in London and without the Wokingham group we would have been very much alone. It was invaluable having a regional group. To be among like-minded people and other sufferers was a humbling experience. We were able to be ourselves without feeling ostracised and friendships were formed.

Helen: It was important that the people who came to the group got the most out of the meeting.  We have had speakers come from UCL Hospital and John Radcliffe Hospital to update the group on research.  When you are dealing with a rare disease the importance of research to one day find a cure is of course important if not for those attending for the next generation. 

What would you both say has been the most interesting or helpful piece of information or guidance you received from being part of the group?

Helen: Being introduced to Simon Ball (an animator) who interviewed people with PCA to make a film with the use of animation to show what a person with a diagnosis of PCA perceives the view they are looking at to be. 

You can see the animation by Simon Ball on YouTube by clicking here 

Maggie: For me it was listening to other’s experiences and gaining an insight to what help is out there if you knew where to look! The Fact sheets the group helped to develop have also been really useful and were drawn up for hospital staff to use when a sufferer has to go into hospital. 

Do the group’s members stay in contact outside the pre-organised meetings and if so, how is this beneficial?

Helen: As our members are quite widespread the meeting point for a coffee is usually halfway between us.  Members live in Aldershot, Basingstoke, Somerset, Gloucester, Guildford, Maidenhead, Marlow and Oxford! I am happy to meet them for a coffee in between meetings and I meet newly diagnosed people, this breaks the ice before coming along to the first meeting

Maggie: As a loved one’s illness progress at different rates, it can be difficult to maintain contact with other members. However, I have kept in touch with two or three members and Helen has become a very dear friend. 

If you had to choose three words to describe the PCA carer support group what would they be?

Helen: Supportive, understanding, encouraging.

Maggie: Informative, welcoming, vital.

Thank you to Helen and Maggie for giving us an insight into this incredibly helpful support group.  If you have a loved one diagnosed with PCA and you would like more information about this regional PCA support group, please email contact@ypwd.info