Hi, I'm new to this fantastic site! My husband has been diagnosed with PCA, which is a rare visual variant of Alzheimer's, apparently, affecting his visual and spatial awareness - has anyone else experienced this - and are there any tips on how to be a better carer?
crybaby
Hello CryBaby,
www.raredementiasupport.org. runs specialist support services for individuals living with, or affected by, one of five rare dementia diagnoses, including PCA (Posterior Cortical Atrophy). The site aims to provide information and support to people with PCA, their families, friends and healthcare professionals. Indeed, Dr Timothy Shakespeare from the PCA team at UCL, the creators of the rare dementia support, has recently joined the Alzheimer's Society, bringing with him expertise in PCA.
There is also the immensely valuable Facebook support group ("closed group" - needs free registration to join) "Posterior Cortical Atrophy Awareness" and "Posterior Cortical Atrophy - early stages". Nearly 900 members, mainly UK but also USA/worldwide. All forms of documentation on the illness, medication, practical help and above all emotional support. Literally the pool of tried and tested, living expertise.
There currently appears to be fewer than 1000 individuals diagnosed with PCA in the UK.
Where are you based? There are an increasing number of London and regional support groups -Crybaby, PCA is a very tough journey and you'll grow much stronger, with tears but you won't stay a "crybaby"! Best wishes
