This is the latest blog for Dementia Alliance International, featuring Susan Stephen talking about living with PCA.
The following information about PCA is from the Alzheimer’s Association (USA) and I decided to include it on this blog as it is a rare form of dementia many people know very little about.
About Posterior Cortical Atrophy
Posterior cortical atrophy (PCA) refers to gradual and progressive degeneration of the outer layer of the brain (the cortex) in the part of the brain located in the back of the head (posterior). It is not known whether PCA is a unique disease or a possible variant form of Alzheimer’s disease. In many people with PCA, the affected part of the brain shows amyloid plaques and neurofibrillary tangles, similar to the changes that occur in Alzheimer’s disease but in a different part of the brain. In other people with PCA, however, the brain changes resemble other diseases such as Lewy body dementia or a form of Creutzfeld-Jacob disease. Most cases of Alzheimer’s disease occur in people age 65 or older, whereas the onset of PCA commonly occurs between ages 50 and 65.
There is no standard definition of PCA and no established diagnostic criteria, so it is not possible to know how many people have the condition. Some studies have found that about 5 percent of people diagnosed with Alzheimer’s disease have PCA. However, because PCA often goes unrecognized, the true percentage may be as high as 15 percent. Researchers and physicians are working to establish a standard definition and diagnostic criteria for PCA.
The symptoms of PCA can vary from one person to the next and can change as the condition progresses. The most common symptoms are consistent with damage to the posterior cortex of the brain, an area responsible for processing visual information. Consistent with this neurological damage are slowly developing difficulties with visual tasks such as reading a line of text, judging distances, distinguishing between moving objects and stationary objects, inability to perceive more than one object at a time, disorientation, and difficulty maneuvering, identifying, and using tools or common objects. Some patients experience hallucinations. Other symptoms can include difficulty performing mathematical calculations or spelling, and many people with PCA experience anxiety, possibly because they know something is wrong. In the early stages of PCA, most people do not have markedly reduced memory, but memory can be affected in later stages.