New to site, question about stages

susan85

Hi. Just joined this morning and already see posts that are pertinent and helpful. Question about stages -- I see posts referring to stage 4, stage 7, etc and am unfamiliar with these numbered stages. I've seen early/middle/late stage definitions and think my husband is middle stage. How are these numbered stages derived? They seem to be more precise than E/M/L stages.
Thanks for being there.
P.S. Read some additional posts and learned about the FAST test. Tom has not been formally evaluated by his neurologist but I am guessing stage 5. His dementia has increased significantly in the past six months due (I believe) to repeated episodes of prolonged seizures. His seizure disorder was very well controlled for years but something changed in January 2023. I fear that the recent seizures caused further brain damage. His baseline in January was mostly independent, OK being left alone for several hours, enjoyed walking the dog and playing his guitar. Now I don't leave him alone for longer than 30 minutes because I cannot know when his confusion will lead him to do something dangerous like take medication off schedule or try to use the stovetop. He knows how to dress and bathe but needs supervision and occasional hands-on help to complete these activities. Episodes of delusion and hallucination especially in the middle of the night.

ButterflyWings

Welcome Susan85, though we always say how we wish you did not need to join us, this is a good and caring group for the dementia journey.

One of the best things about fellow caregivers connecting here and helping each other is that we learn something new daily that helps even those of us who have been in the trenches for a while. For example, I am posting a link for you here, that I had not seen before. It is a different version of the Tam Cummings staging tool that I've been referring to most lately - which breaks down your LOs progression in 7 detailed stages, with subcategories for 6 and 7, even to help with pinpointing a little better.

I will pull that standard one next, but for now here is the gift you have given me: Caution, it is hard for some to read the end days information included here, but we are dipping toes into Stage 7 now, so I need to know. DBAT.pdf (squarespace.com) This is on the Tam Cummings' website and has additional sections I had not seen before, with nursing care notes, and some comments on caregiver experience aligned with each stage. Powerful information and I look forward to reading it as soon as I post this!

*Edited to add link to the FAST scale which I also like: Measure and Manage the course of AD using The Functional Assessment Staging Test (FAST) (mccare.com)

Others will come along soon with additional greetings and good advice. Mid stages are tough. We have lots of stories and some laughs to share, as well as some caregiver tips to make the journey easier. You are in good hands here. We have either been there, done that, are going through the same things with you, or will be.

ButterflyWings

More info on 7 Stages:

Article with user-friendly explanation and examples 7 Stages of Dementia Disease – Page 3 – Entirely Health

Ed1937

Susan, welcome to the forum. I wish you didn't need it, but you will find it is very helpful. It's a great place to ask for and receive answers to questions, share your experiences, and be among people who actually "get it".