What stage do you think my DW in??

charley0419

My wife was diagnosed 1yr ago “mild Alzheimer’s “. DW has short term memory loss , gets confused and was told not to drive.everything else she does to take care of her self. Did have her on Clinical Trial for 2 months but stopped. WANT STAGE YOU THINK SHES IN??????

harshedbuzz

This thread has a link to Tam Cumming's stages-

Excellent Handout Packet: dementia, stages, CGs, actively dying - Tam Cummings — ALZConnected

Howaboutnow

none of the health professionals have been willing to stage my DH. I’ve read every Staging Model available online and with each model there are drastically different “average durations” for each stage. If there is any accuracy within the models, I have a good idea what stage he is in. But still, irritates the heck out of me that throughout the years, as I’ve asked “where are we”…no one took the time to simply say “let’s have a look at where you are with DH today and help gauge where his dementia has progressed”. WHY? I am brutally aware we can’t predict the future, but there is undeniable clarity on the past and present. For caregivers, trying their best to endure and solely carrying the increasingly demanding weight of managing dementia, it is a tremendous disservice to not help stage their LO.

For me, I think in the beginning I knew we were a long way out to the really bad stuff. So I didn’t push with Drs enough. But we’ve been in the “bad stuff” era long enough that i struggle every day with how long this will go on. I have promised myself that on our appt in 2 weeks with Palliative team I will not leave without a candid, direct discussion with the PA about staging. I will not fear appearing desperate. I am.

Thankfully, It seems on this board that others have not had the same experience as i have. I would suggest, don’t be intimidated. Require answers where there can be answers. There isn’t an answer for all our questions, it’s the nature of dementia. But a discussion even in “generalities” can provide some insight and can help build expectations and realities to come. That alone can provide relief and support. Push for that.

All the best.

ghphotog

It's very difficult to stage accurately as many symptoms can overlap with other stages. For the most part we, myself, are just doing an educated guess based on certain dementia assesment tools such as https://static1.squarespace.com/static/6372d16ea4e02c7ce64425b7/t/63f7b80d80d8aa3e3aa4a47d/1677178894184/DBAT.pdf

Our nuerologist uses the 3 scale method of Mild, Moderate and Severe. My DW is severe and my best guess is she is in stage 6 somewhere. My DW quit driving approx 4-5 years ago, just before Covid hit. She was probably stage 3 or 4. She also would get confused driving and have a difficult time finding her way. When she became "unsafe" I stopped her from driving at all, even with me in the passernger seat helping her. For a while I would take her to an empty, no traffic, area and let her drive around a little but never on the street after that. I hope this helps.

Marta

How About Now: we health professionals do not stage dementia other than mild, moderate, or severe because there is no clinical utility to doing so. Medical treatment only hinges on those three categories.

The utility for the seven stage method is that it is a shorthand for communication among CAREGIVERS, such as the folks on these boards, not for medical professionals. You can stage your husband better than any provider, because you are with him and responding to his deficits 24/7. Giving him a label, such as stage 6a, will not change one iota what you are already doing for him.

Joydean

Marta thank you for your explanation. For the past two years, my dh’s psychiatrist has labeled him as moderate to severe. The last report that I got from him still showed moderate to severe, but our last Report showed severe. We will be seeing him again December 6 and my husband has really gone downhill since our last visit. Based on the seven stages, I have him as ending stage six and starting stage seven. Thank you very much for explaining why the doctors just use the three stages. Thank you helps me understand..

Elshack

Our neurologist gave me an estimated timeline re: how long each stage would last. Ex: last appt 5 yrs ago he said he would have about 2 yrs before DH got into the next stage. That seemed to hold true.

harshedbuzz

@Marta That makes so much sense.

I will add another thought. As a spouses and other daily caregivers are likely the experts of "where" a PWD is currently, if they're observant and familiar with the typical progression, than a medical professional would be.

When we took dad to appointments, we scheduled for a time of day when dad tended to be his most cooperative and engaged so neither his neurologist nor geri-psych saw the combative mornings or the sundowning confabulations. At a certain point, dad would only shower if he was seeing a doctor and mom would outfit him in crisp khakis and Brooks Bros. button down rather than the food encrusted sweats he preferred. His language skills remained "amazing" (per SLPs who worked with him) and he showtimed like there was an Oscar in it for him which gave the impression that he at a less impaired place of the dementia continuum.

HB

charley0419

My DW in beginning but hides it well, hasn’t spoken to anyone, not ever daughters , of her issues

Iris L.

What issues?

Iris

charley0419

https://alzconnected.org/discussion/comment/187519#Comment_187519

Diagnosis

ElCy

You never really know. My DH was at late stage 4. Had a UTI that caused him to completely skip stage 5 and 6. Was in stage 7 for 12 weeks, then passed away. All of this happened in a 6 month time frame.

charley0419

https://alzconnected.org/discussion/comment/187525#Comment_187525

Every story different

ghphotog

Charlie, We were the same way in the beginning. She didn't want anyone to know and she also was in denial. We never told her family but one day they, her daughter, son and sister, group called me on the phone and asked if she was having memory problems. At that point we couldn't hide it anymore and I said yes and for a couple of years. We should've brought them in to the struggle earlier on and they would've been more supportive I believe.

Howaboutnow

https://alzconnected.org/discussion/comment/187480#Comment_187480

Marta, Thank you. I presumed what you said, but you are the first health professional to say it.

There is “no clinical utility” from a Medical Professional position beyond the 3 Stage Model, that is clear now, after flailing for several years. This is my first-time caregiving for a DH with dementia. You were able to clearly state in a sentence, what our Neuro’s clinical limitations are and what our Medical professionals haven’t clarified in 6 years. Again, thank you. That may save time and frustration of many.

For me, it would have been helpful if Neuro (or any medical professionals) acknowledged their limitations and would also recognize that “as caregivers you are going to struggle with the unknown growing changes in your LO and how to manage the losses of particular functioning. Tremendous data has been compiled and analyzed to offer a loosely held progression map. While everyone with dementia is unique, these more detailed models, while offering no “treatments”, may give you a bit of insight into where your LO is and what may be in front of you both. Seek those if you see benefit. Building an experienced team now (that could be the umbrella of a Palliative Care team), beyond our team, will help you navigate in the future”

“giving him a label, such as 6a, will not change one iota what you are already doing for him”. Correct. However, rather than a “how-to” i was looking for a “where are we?”; an insight into where in the spectrum we might be and what may be ahead. I find the more detailed Models helpful and settling to some degree as the one with the paddle on a 2 person raft out to sea for several years. Others may not find any benefit.

charley0419

https://alzconnected.org/discussion/comment/187533#Comment_187533

Our kids know matter of fact they noticed. But she never mentioned

Razduck

https://alzconnected.org/discussion/comment/187480#Comment_187480

Marta, Thank you for your insightful explanation. Your words make a great deal of sense, especially what you said about us Caregivers. If my DW is in 4a or 6a Staging matters not. The key is that I’m totally tuned into her needs no matter what they are and that I’m here for her 24/7/365. I can tell from her reactions to me that she loves that I’m here for her. Even when I’m outside doing yard work, she will always come looking for me. I pray to god that this will not change, but in reality, I know that it will. The one thing that won’t change is my 1,000% commitment to her!

charley0419

My feeling exactly, 54 yrs long time with someone who may forget you.

Iris L.

Charley, in your DW's mind, she has no diagnosis, there is nothing wrong with her. This is not denial, this is anosognosia. She doesn't see what you see.

Iris

charley0419

Just leaning about that

Marta

How about now: My shorthand way to prepare caregivers for what is to come is to direct them to these boards.

Ten years ago when I first came to these boards, I found them on my own - husband’s neurologist and neuropsychologist and PCP did not refer me.

He was also in a clinical trial at a major medical center where no one mentioned these boards.

AA may need to connect with the medical community.

M1

I'll second Martas feelings about these boards being an unrecognized resource. Neither of the two local support groups i attended was aware of them until i brought them up, and neither group was nearly as helpful as this forum has been.

Dio

With DH's fluctuations, I totally understand why he can't have numbered stages attached. We're going with Early, Middle, and Late. With LBD, symptoms appear from all three stages at different times. That's the best we know for now. His arm tremors have stopped...go figure. Didn't take meds for Parkinson's symptoms. Still walks very slowly like 10 years older. Urinary incontinence started last November. Who knows?! Just one day at a time. But I know the late/final stage will be more visible and concrete.

Joydean

I found this website in the back of one of the books I had read. Honestly it took me months before I had the nerve to check it out. The best thing I have done in this journey! Don’t think I could have made it without this forum! I don’t write much lately, not because dh has gotten better, that will never happen and we all know it, but he has been a lot more demanding of my time. He has gone through a lot of progression the last 4 months!

Brokenhearted in Illinois

I agree . No one helps you prepare for what lies ahead. So many people are making a living off of dementia patients snd their families but offer no valuable information or help. So frustrating. If I see one more inverted list in my mailbox I am going to scream !