A diagnosis of post cortical atrophy (PCA) can leave a person with many questions, but with the right information and support, people can live well and carry on doing the things they enjoy doing for some time.
The Rare Dementia PCA Support Group sends out newsletters and holds meetings across different parts of the country. These Support Group meetings provide opportunities for people affected by PCA to meet others and share their experiences. There is also a supportive Facebook group (search ‘Posterior cortical atrophy awareness’).
You can contact them by email contact@raredementiasupport.org.
The Admiral Nurse Dementia Helpline offers practical and emotional support to anyone affected by dementia, including advice on managing the symptoms. Call 0800 888 6678.
Some people with PCA may benefit from using visual aids and resources for people with sight problems. For more information about visual aids and for support, contact the Royal National Institute of Blind People at helpline@rnib.org.uk or call 0303 123 9999.
Alzheimer’s Society provides support and care information for people with all forms of dementia and their loved ones and can tell you about local support groups in your area. Call 0333 150 3456.
You can also talk to your doctor or nurse for advice on caring for someone with PCA.
Support for people affected by dementia
This booklet is for people affected by dementia, including family, friends and carers. It lists organisations offering help, advice, information and support.
Order health information
Alzheimer’s Research UK has a wide range of information about dementia. Order booklets or download them from our online form.
This information was written in April 2021 and is due for review in April 2023. Please contact us if you would like a version with references.
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