Overview
Posterior cortical atrophy (PCA), sometimes called Benson's syndrome, is a rare brain disorder that mainly affects the back part of the brain, which is responsible for processing what we see. Unlike more common forms of dementia that first affect memory, PCA usually starts by causing problems with vision and visual tasks — even though the eyes themselves are healthy. People with PCA may struggle to read, judge distances, recognize objects or faces, or navigate familiar spaces. Over time, the condition can also affect memory, language, and thinking skills. PCA is considered a variant of Alzheimer's disease in most cases, meaning the same types of abnormal protein buildups (amyloid plaques and tau tangles) found in Alzheimer's are also found in the brains of people with PCA. However, because the damage starts in a different part of the brain, the early symptoms look very different. There is currently no cure for PCA. Treatment focuses on managing symptoms, supporting daily function, and improving quality of life. Medications used for Alzheimer's disease, such as cholinesterase inhibitors (like donepezil), are sometimes used to help with thinking and memory symptoms. Occupational therapy, vision rehabilitation, and psychological support are also important parts of care. Early diagnosis is key to planning ahead and accessing the right support.
Also known as:
Key symptoms:
Difficulty reading or following lines of textTrouble judging distances or depthProblems recognizing familiar faces or objectsGetting lost in familiar placesDifficulty with tasks that require hand-eye coordination, like buttoning clothesSensitivity to bright light or glareSeeing double or having blurry vision despite healthy eyesDifficulty telling left from rightProblems with writing or spellingTrouble using everyday objects correctlyAnxiety and depression, often related to awareness of symptomsMemory problems (usually appearing later in the disease)
Clinical phenotype terms (21)— hover any for plain English
Sporadic
Usually appears on its own, not inherited from a parent
Adult
Begins in adulthood (age 18 or older)
FDA & Trial Timeline
10 eventsCancerCare Manitoba
In Gab Jeong, MD — NA
Medical University of Gdansk — NA
Aydin Adnan Menderes University — NA
Medical University of Silesia — PHASE4
Anhui Medical University
University of Michigan — NA
Fatih Sultan Mehmet Training and Research Hospital
Dr. Dean Reeves Clinic — NA
Peking Union Medical College Hospital — PHASE4
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for Posterior cortical atrophy.
5 clinical trialsare actively recruiting — trials can provide access to cutting-edge therapies.
View clinical trials →Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Posterior cortical atrophy.
Community
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Start the conversation →Latest news about Posterior cortical atrophy
1 articlesCaregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.Is my diagnosis definitely PCA, and what tests confirm this?,Should I be tested for genetic risk factors, and what would that mean for my family?,Are there any clinical trials I might be eligible for?,What medications might help my symptoms, and what are the side effects?,What specialists should be part of my care team?,What changes should I make at home to stay safe?,What support services are available for me and my family?
Common questions about Posterior cortical atrophy
What is Posterior cortical atrophy?
Posterior cortical atrophy (PCA), sometimes called Benson's syndrome, is a rare brain disorder that mainly affects the back part of the brain, which is responsible for processing what we see. Unlike more common forms of dementia that first affect memory, PCA usually starts by causing problems with vision and visual tasks — even though the eyes themselves are healthy. People with PCA may struggle to read, judge distances, recognize objects or faces, or navigate familiar spaces. Over time, the condition can also affect memory, language, and thinking skills. PCA is considered a variant of Alzhei
How is Posterior cortical atrophy inherited?
Posterior cortical atrophy follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Posterior cortical atrophy typically begin?
Typical onset of Posterior cortical atrophy is adult. Age of onset can vary across affected individuals.
Are there clinical trials for Posterior cortical atrophy?
Yes — 5 recruiting clinical trials are currently listed for Posterior cortical atrophy on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.
Which specialists treat Posterior cortical atrophy?
18 specialists and care centers treating Posterior cortical atrophy are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.