What's next after a diagnosis? Visualization of the dementia progression scale
Hi! I"m new here, I was a carer for my mother 24/7 for 7 years and worked with other carers to help the most vulnerable. The journey continues as my mother was nurse working with terminally ill children and she woudn't want me to give up. These days, I create content to help raise awareness around dementia.
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 that question.
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.
I hope you find it useful!
, thank you so much for sharing this! It can be very helpful to members trying to understand what they will face or will see as a care partner. -Warmly, Donna (team member) 
Thank you for sharing this practical took that is easy to understand. Do you have any other tools that you use that could be helpful? Scott AlzheimersDisease.net Team Member
I’m really interested in how Dementia is diagnosed. Could you provide links to published papers?
I’ve been on the cognitive impairment/ decline/ degeneration for more than three years. I am bipolar. I have managed being bipolar through education, life management, medication, psychiatric and psychological care. I’ve worked harder than most people realize. “I don’t look like I am bipolar”
I self reported cognitive impairment to my psychiatrist who finally referred me to a neuropsychologist for testing who referred me to a memory clinic. After more tests, I was diagnosed with Dementia. It has been a hell of a year. Anxiety and depression followed. I lost my self confidence and retreated from previous life accomplishments.
My annual test showed only one decline in visual spatial testing. I am now fighting back against the dementia label and stigma. My friends think I’m brave and my family members are too helpful. My psychiatrist says 70 percent of women with bipolar experience cognitive decline. I am online researching this fuzzy line between MCI and early stages of Dementia.
I have a spinal tap scheduled for next month and then a follow up. If the spinal tap shows amyloids, is that a definitive diagnosis?
What are the ethical, moral, social and emotional implications for the unclear information, research, support provided .
Please respond., that's a complex question, and I hear your curiosity and your urgency. I did a little research, and am going to share what I have found.
A lumbar puncture can show A beta (Amyloid Beta Protein), which can be an indicator of dementia. a lowered level can point to A beta being trapped in plaques in the brain.
Your doctor is right, current knowledge shows an increase in the development of dementia in people with bi-polar, but some doctors think there is more study needed: https://www.medicalnewstoday.com/articles/bipolar-and-dementia
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5019473/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5365367/
Diagnosing dementia is complex, and is considered a diagnosis of exclusion - meaning, they find out what it's not before they find out what it is.
Not all dementia is Alzheimer's Disease. You can find out more about different types of dementia here:
https://www.nia.nih.gov/health/alzheimers-and-dementia/understanding-different-types-dementia
https://www.alz.org/alzheimers-dementia/what-is-dementia/types-of-dementia
These articles talk about diagnosis:
https://alzheimersdisease.net/research-studies/diagnosis-blood-test
https://alzheimersdisease.net/diagnosis
https://alzheimersdisease.net/living/not-right-diagnosis
This article shows some of the tests you can expect or request:
https://www.alz.org/alzheimers-dementia/diagnosis/medical_tests#:~:text=Physicians%20use%20diagnostic%20tools%20combined,to%20make%20an%20accurate%20diagnosis.
The last question, well I think we all wish we could answer that. I can conceive of no ethical or moral reason for not aggressively
pursuing answers to keep us whole, happy, and healthy. The emotional implications, in my experience, are devastating. That's why I think what
we do here is so important - sharing information, honesty, personal experience, and always support.
I hope these help answer some of your questions and maybe some questions that you hadn't thought of to bring to your doctor. Hold him to an unwavering standard of honesty. And please know that we're always here to share information and support. - Warmly, Donna (Alzheimersdisease.net Team Member)
