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What happens as PCA progresses? (sensitive)

Professor Sebastian Crutch describes how posterior cortical atrophy changes over time, and the seven stages of PCA project.
The impact of PCA, I think, as with all of these progressive conditions, changes as the disease progresses, because it’s not a static condition. And that’s why it’s so difficult, or so important, to provide people with the right information at the right time, and not just to assume that you can give people information about the disease and that would be the job done. People’s experience of it, their understanding of it, and the point at which they want certain bits of information can vary. And of course, there’s a huge reaction to this. Some people get the diagnosis and immediately embrace the task of gathering information about it and understanding the nature of their problems.
Other people struggle to even accept that there’s anything wrong to start with. And so the point at which they find the information that we, as health care professionals, want to provide to them, they might find that useful at different points. One of the things people with PCA often ask us is what will happen next? And sort of, where am I in the course of the disease? And of course, as with any other degenerative disease, it’s difficult to say, because people present to the doctors and get a diagnosis at different point– sometimes very early, sometimes much later, for a whole host of reasons.
So one practical approach we took was to try and adapt something, which is called the Seven Stages of PCA, which is a long-established description of how typical Alzheimer’s disease progresses. We tried to translate it for people with PCA, to try and say, across these so-called seven stages– which are not fixed, but they’re a broad description of each of the different points of progression, where Stage 1 is someone might experience some distortions of vision, but no one else would notice, and they think they’re otherwise OK; through to Stage 7, where people are much more incapacitated and require end-stage care; and all the sections in between.
And what people found was that even though their personal description, their personal journey through that process of developing PCA wasn’t all the same, this description of seven stages provided kind of landmarks, and gave them a sense of ability to localise where they were, talk to other people about the difficulties they were having at the moment and problems they hadn’t yet experienced but might need to plan for, and some sense of the trajectory and where they were going. The timings, unfortunately, between those stages are very variable. Some people progress quickly. Some people progress much more slowly.
But I think having a sense of the ordering gives people a bit of a sense of control, even though it’s obviously a difficult task to look ahead and think, at some point, I may lose the ability to perform these basic kind of aspects of self-care, for example. As time goes on and the disease progresses, the disease tends to affect more areas of the brain. So it tends to start at the back and spread forwards. And so as that happens, aspects of people’s cognitive function, like their memory, is likely to become more affected, and also aspects such as their language.
So for example, finding the right word, word-finding difficulties, a really frustrating thing, when it’s on the tip of your tongue and you know what you want to say, but you can’t quite get the right word out. And that can be quite common in PCA and becomes worse as the disease progresses. Further down the line, often the picture becomes very similar to that of, in a later stage, of more typical Alzheimer’s disease, where people become confused and have little understanding of what’s going on and find communication very difficult.

Professor Sebastian Crutch describes how posterior cortical atrophy changes over time, and the seven stages of PCA project.

The Stages of PCA project is based on a framework developed for typical AD, and aims to give an idea of the different symptoms that may be experienced at different stages. There are many caveats to the stages, everybody is different and people may move at a faster or slower rate; and people’s perception of what is ‘mild’ and what is ‘severe’ may be different.

We’ve listed the labels of the stages with a couple of aspects for each stage below, but do take a look at the stages of PCA document (see downloads below) to see all the caveats and more detail about each stage.

Stage 1. No impairment (normal function)

Stage 2. Very mild cognitive decline
– Difficulties with reading and writing
– Difficulty using a computer

Stage 3. Mild cognitive decline
– Difficulty finding things in a handbag, cupboard, etc.
– Difficulty seeing things which are ‘right under your nose’ or only seeing part of something

Stage 4. Moderate cognitive decline
– Inability to read labels on food packets
– Problems discriminating coins

Stage 5. Moderately severe cognitive decline
– Require help with most or all everyday tasks
– Require support or supervision when walking due to visual difficulties or movement difficulties

Stage 6. Severe cognitive decline
– May become ‘functionally blind’ requiring support in all visual activities
– Experience deterioration of other sensory functions such as touch

Stage 7. Very severe cognitive decline
– Symptoms may resemble typical AD more closely than at previous stages
– Individuals may have a reduced ability to respond to their environment and carry on a conversation

In the video we heard Professor Crutch explain how different people like to receive different information about the disease at different times. What are the things that would encourage you to want more information earlier, and what are the things that would mean you prefer not to find everything out right away?

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