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We were told that the onset starts in the occipital lobe for PCA which makes sense that her visual spatial abilities deteriorated first. Her dr. says that only 2% of Alzheimer's take this route and that some docs don't eve put it in the same category. Any one out there have insights, experiences to share?

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Hi xmart,
I'm so sorry about this vision problem along with other Alzheimer's symptoms. It's rough for you all.
I have seen PCA called an "atypical form of Alzheimer's," but the words below are from the Mayo Clinic site, and they explain it differently:
"Posterior cortical atrophy is a rare, degenerative brain and nervous system disorder (neurological condition) that causes your vision to decline. The vision problems result from a disease of your brain. Common symptoms include difficulties with reading, recognizing common objects and recognizing familiar faces. It may eventually cause your memory and thinking abilities (cognitive skills) to decline. Posterior cortical atrophy may be associated with Alzheimer's disease, Lewy body dementia or other neurological conditions."
I interpret this to mean that PCA can occur with other dementias, including AD, but it is quite rare. In any brain problem such as dementia or stroke, the part of the brain affected determines the symptoms. With Alzheimer's disease, overall shrinking of the brain is one sign doctors watch for. The cells in the hippocampus, where short term memory is formed, is generally the first to show damage. In this case, it sounds like the situation started differently but also involves other areas of the brain.
There's still much that isn't known about individual dementias, so the best thing to do is to keep communicating with a neurologist about this particular case.
Take care and keep searching for information. I'd suggest that you contact the Alzheimer's Association at www.alz.org to help you keep on research and for more guidance.
Take care,
Carol
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Hello. My mother has PCA. She was diagnosed at 57 and is now in the later stages at age 64. I have been my mother's primary caregiver and would be more than happy to share our experiences with you and answer any questions. My mother's initial symptoms were mostly related to her vision, spatial skills and ability to deal with numbers. For the majority of her illness she retained her memory and reasoning ability - which was wonderful considering the experience of most people with alzheimers. However, as the disease progressed she began to have schizophrenic-like symptoms. She never was a flight risk - she always wanted to be with somebody. However, the disease became incredibly challenging as her vision worsened but she constantly wanted to move (I believe this was a side affect of the medication to treat her hallucinations). She was a fall risk and I ultimately had to hire 24-hour private care, even while she was in a nursing home. She is now bed-ridden and has lost the ability to speak. However, I visit her everyday and it is very clear to me that she knows that I am there. I feel like she is very much trapped in her body. I would be more than happy to speak to you at any point. I have only found one person other than my mother with this disorder, and most doctors are not even aware of it. It can be very isolating.
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My husband was diagnosed with PCA at age 59 in early 2004. Progression of the disease was fairly slow for the first seven or so years, but I had to do more and more for him as it progressed. Our neurologist at Northwestern Medical Faculty Foundation (Chicago) said PCA is a form of Alzheimer's disease, and his AD has become more apparent in the past year or so. I researched it as much as I could, and did find European websites to be more helpful than anything state-side. Husband was also a fall risk and very agitated, but after I took him to the hospital for losing consciousness twice in 3 days in 08/2012, he was transferred to a GTU (gerontology treatment unit) which was basically a psych ward to get his medications adjusted. After four weeks in two hospitals, he went to a NH. But during his 3+ week stay, the NH required a full-time sitter at the beginning and then again after he fell (while at the nurses' station where they kept him for his own safety during the day) necessitating stitches in the ER. Annualized, that 24-hr/day, 365 days/yr sitter fee alone would have been $140,000 plus the cost of the NH and incontinence fee ($221,000 total)! The situation was untenable financially. Fortunately, the NH suggested that he enter a wonderful local Hospice program, which he did under the category of "failure to thrive", (significant and continuing weight loss). Hospice doesn't like to take young AD patients on that diagnosis alone. Last week I retained a caregiver (through a licensed agency recommended by hospice). He, and his relief caregivers will enable me to get through this with my sanity intact!
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My friend has benson's also called PCA or posterior cortical atrophy. There is a very good support system in London http://www.pcasupport.ucl.ac.uk/info.html that has a news letter and up-to-date information. Also a blog with helpful info

Yahoo health site for PCA that is not very active but does have information still on-line.

Good luck
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There is a very good closed private Facebook site posterior cortical atrophy awareness that is run out of the UK. The Facebook page has about 150 people from all over the world that have a loved one with PCA. It's a good site to join and your other Facebook friends can not see the site. Good luck.
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Thank you, so much for your responses! Like you, I tried to read and research from every possible website and angle I could find, which were limited. Through teaching elementary art (my profession of 33 years) and pursuing my master's degree I studied brain research related to student development, learning abilities and disabilities. These studies provided me with information that I have been able to apply toward understanding the specifics of the brain's divided lobes and it's functional capacity as an interconnected system. I gained insight that allowed me to predict helpful strategies including activities that my family could use during the progression of this disease. My mom has also been seen by Dr.s Meselum and Burke at Northwestern in Chicago. At this stage my mother can no longer communicate verbally, although during conversations she often interject a phrase that doesn't really make sense. Her mobility is low as her walking is stiff. Her hearing is extremely sensitive and excess noise and commotion unnerve's her. Her facial expression is mostly lost in a stare and she responds less and less by sight, even though she is not blind. In spite of her difficult state, she is delightful to be around as she is happy; it is easy to make her laugh and she will sing to any song that she hears, providing she knows the words. She and my dad both 80, live in a high rise for seniors with a live-in caregiver that is SO loving and good with both of them. Hospice health care provides Mom with an assistant for bi-weekly showers, nursing care, supplies for incontinence and art therapy (my request :), of course!). Again, thank you for sharing your experiences and I will be sure to check out the websites you provided.
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