What's next after a diagnosis? Visualization of the dementia progression scale

[StephanT]

A common question following a diagnosis that rarely gets answered by doctors is: 'What’s Next?”.

I found that the Global Deterioration Scale (GDS) developed by Dr. Barry Reisberg was, with hindsight, the most representative scale when it comes to answering 'what's next'.

This scale, however, is not exactly easy to read as it's entirely text based - so I created a visual representation of it. I attach it to this post and hope you find it useful.

For those that would like to print it, I also created a PDF and linked in on my blog at memorymoves.com.

I hope you find it useful!

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Stephan T

This is so helpful. Have you considered producing a "layman" version, with more accessible/everyday language?

I am getting a Problem loading page when I click onto the link and also unable to read what is on this page due to the sizing. I really would like to read it as I read so many different replies to this question.

Thank you! Yes I have thought about it. There are multiple reasons why I haven't though, the main one being given it is the first of many pieces of content I am producing, it was extraordinarily important to stick to the medical language and stay accurate.

It can also be extraordinarily divisive to produce content around dementia, because everyone is different, and there are so many sub-types with different impact. So words like 'may' and 'could' become mandatory.

Between you and me, it shouldn't be that way. If we want to break the law of silence around dementia, raise awareness and provide carers, patients and families the resources they need, we need to collectivity accept that some material will have to be a bit more 'summarized' and less accurate.

I hope to be doing this for a long time, and when I have enough good standard in the community, produce a chart that will be simplified. Thank you for your understanding!

Carpediem, looks like my site is too fresh for the redirect to function properly. Try this link for the printable pdf:

Very helpful thank you

Thank you very much for this. Scary but also helpful

That is so clear. I almost wish I hadn't read it. My DM is between 7a and 7b at the moment. She has no mobility and severe contractures in her hands. I hope that she doesn't suffer further.

That is so clear. Thank you for producing the chart and signposting on this thread. I wish we'd had access to your Chart when DMIL was diagnosed with Vascular Dementia.

Thankfully she never got to the latter stages as she caught Covid and died a peaceful death. Dementia is such a bloody awful disease isn't it?

Thank you so much for this - i agree it’s the clearest I have seen (my DM is somewhere in stage 6). Reading stage 7 was not easy for me, but it is useful to see it laid out like this and improve my understanding of what is ahead. Thank you.