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(also see Alzheimer's Disease)
Posterior cortical atrophy (PCA), also known as Benson's syndrome, is a progressive degenerative condition where damage to brain cells is particularly focused at the back (posterior) of the brain, the region responsible for visual processing.
Posterior cortical atrophy: information from the Alzheimer's Disease Society
Support Groups
Rare Dementia Support service
This site aims to provide information and support to people with posterior cortical atrophy (PCA), their families, friends and healthcare professionals. Rare Dementia Support is a unique, world-leading service providing support, guidance and information to everyone affected by or at risk of a rare dementia, in a space of mutual respect and community. It builds on the pioneering research of the UCL Dementia Research Centre (DRC) and its expertise in young-onset, inherited and unusual dementias. With the generous support of the Selfridges Group Foundation and expertise from their digital and creative teams, they have designed a new, innovative online support platform. People living with rare dementias informed every step of the development process: from website layout, accessibility and content to design, fonts and colours.
Alzheimer's Disease Society
Offers information and advice to people with Alzheimer's disease and their carers. A helpline runs from 8am-6pm Mon-Fri. Information sheets, books and videos on all aspects on caring for someone with dementia are available. There is a public affairs and fundraising department. A monthly newsletter is available to members.
Brain and Spine Foundation
Information on living with a neurological condition and on diagnosis. There are publications and resources. The useful glossary of neurological conditions (under 'Information and support') includes links to some other organisations as well as to Brain and Spine Foundation information.
Neurological Alliance
Collective voice for 80 organisations, including stroke and brain injury. Organisations are listed at https://www.neural.org.uk/our-members/, a good place to start if looking for information on those conditions. Site also includes information about living with a neurological condition, a glossary, and information about onset and diagnosis as well as a small set of real life stories.
NHS Inform: brain, nerves and spinal cord
NHS inform is Scotland's national health information service, with the aim of providing the people in Scotland with accurate and relevant information to help them make informed decisions about their own health and the health of the people they care for.