Answering "What's next"? The Dementia Deterioration scale visualized.

The Global Deterioration Scale can now be downloaded in PDF format.

A common question following a diagnosis that rarely gets answered by doctors is: 'What’s Next?”. We, families, carers and patients are usually gently redirected to other concerns, such as the need to obtain power of attorney to protect our loved one's assets, in order to be able to guarantee continued care.

Understanding the progression of the disease can help us become more kind to those in the early stage and haven't received a diagnosis yet, while staying level headed in the dreadfully long 7th stage.

The benefits and shortfalls of the Global Deterioration Scale

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'. To be crystal clear, my mother was suffering from FTD/PPA, which is different from the Alzheimer's subtype. However, the progression of her illness closely followed each step.

The issue with this scale however, is that while accurate it is lengthy, complex,  and its textual presentation doesn't do a good job of representing how long each of its various stages last on average. Evidently, the answer is 'it varies' but given Dr. Reisberg had provided the averages, I re-scaled it to better represent the progression of the disease. 

Dispelling misconceptions about early signs

The period during which behavioral symptoms could develop is rarely touched on, despite multiple studies which demonstrated that very early signs of dementia could manifest a staggering 18 years before the diagnosis! This is extraordinarily important given that we carers all know that diagnoses, IF they happen, are already delayed by several years. Likewise, a similar study on FTD patients helped me understand why my mother presented signs of delusion of grandeur well before she presented signs of dementia; their research shows that Hallucinations and delusions can even precede onset of other cognitive or behavioral symptoms in patients with FTD. In other worlds, understanding this can help be more kind, accepting, and supportive of those presenting behavioral issues. It also helps us understand when it might be appropriate to contact medical authorities.

Staying informed and making the right decisions during the late stages

Second, thanks to this scale, the 7th stage of the disease, where the patient will display "Severe Dementia", can be accurately represented visually. From an average of 6 years in total to progress from 7a to 7e, and , as it was the case for my mother, "surviving in the final 7f substage indefinitely". 

We all know, sadly, how harrowing this stage is. The infinite threads about "when will it finally end" on the absolutely brilliant Dementia Support Forum highlight the confusion around this difficult time. Anxiety and sometimes even anger can cloud our judgment when it comes to decisions such as the insertion of a feeding (PEG) tube. By informing ourselves, we can make better decisions for our loved one and engage in meaningful conversations about  palliative care.

I hope this is useful. To access the original scale, please visit The Fisher Center for Alzheimer's Research Foundation. I also have posted the file of my infographic as a .pdf on slideshare for those that would like a printout.