2nd Attempt....

dusty 48

Tried to start a new discussion earlier this morning - no joy.

So here's 2nd attempt.

I have a 'discussion' listed on my profile but can't access...not sure what I'm doing wrong here.

toolbeltexpert

Good morning dusty I know this site isn't intuitive. I found part of your first post and as you said it is in your profile which isn't set to public in your privacy settings so I couldn't read it all. your second topic is viewable. You'll get the hang of it. I am still learning it.

Stewart

dusty 48

Thanks, Stewart. Still trying to get settings correct - even I can't see my first discussion now. Not sure this site is for me...

My wife was recently diagnosed as having dementia and about a stage 3-4 level. My understanding is quite limited, but as the Doc (neurologist) explained it doesn't really matter if its dementia or Alzheimer's - the treatment is the same. And Alzheimer's is in fact, a subset of dementia. Right?

She's on Memantine and Donepezil now and tolerating that well. She's doing better and sleeping better too.

So we'll keep on and manage as well as possible.

storycrafter

Hi Dusty. Regarding diagnosis; I have a couple thoughts on that. It depends on how your wife is doing. If all is going fairly well that's good.

There are many types of dementias and it can make a difference in how they are treated/medicated. Lewy Bodies and FTD come to mind. They can be especially difficult behaviorally and some meds used for other dementias is contraindicated for them.

It can be worth experimenting with which drugs are most helpful depending on what's going on with your loved one.

Wishing you well, Helen

Ed1937

Hi Dusty. Not sure if this will be helpful, but if you go to the top of this page, and scroll all the way to the right, you should see your avatar. Click on it, then you should see your discussions. Click on one of them (if there is more than one), and you should see your discussion. But you're right - this site is not very user friendly, and there have been a lot of complaints about it. A few things were made a little better, but mostly the complaints seem to have been dismissed.

Now about all dementias being treated the same - that's not true, although mostly true. There are some medications that should not be used with certain forms of dementia because they might make symptoms worse. If I'm not mistaken, Lewy bodies dementia and frontal temporal dementia are two of the dementias that are commonly affected that way. If I'm wrong, someone will correct me. But those dementias make up a small percentage of dementias, so saying that all are treated the same way probably makes it seem that they are all the same.

dusty 48

Thanks for the responses, all. After reading this, I have to Google what you’re talking about…hey, I’m a noob.

She was given CT scan and the neurologist said there is atrophy/shrinking of the hippocampus region. So that seems to be the root cause. I’m not sure what type of dementia this relates to. And I don’t know what this means as far as treatment. She goes back to the neurologist in October for a progress check.

So, we continue. I’m checking more now on what’s she doing and once in a while they’ll be a slip up that I need to ‘help’ with. She has a hard time in conversation and will get ‘stuck’ on a word and pass it to me; “He can tell you better than me.” Is the go-to method to get her out of that. And I do pick it up to save her embarrassment.

We haven’t told anyone about this. Not sure that’s far off.

Anyway, that’s it for now. Thanks again for the input and listening.

Talk later.

toolbeltexpert

Dusty glad your dw is doing better on the medication. It is often the only way to control some behaviors. As some have said certain types of dementia don't do well with some medication and make things worse.

A dx can make a difference. My dw was first dx last year as mci then a month later probable Alzheimers. Based on my feed back and how long and slow her progress has been I feel that my feed back probably shortened the dx time. I had been doing research I had taken some Alzheimers training from the Alzheimers association 13 yrs ago so I had my dw get the usual rounds of blood work back then with the usual no definitive problems. Then last year they repeated those blood tests and along with a cat scan and an mme came up with the same answer nothing definitive, this is year 13 by my reckoning with things slowly getting worse over time.

Although the site is difficult now I feel it will get manageable. It is the wealth of information and the empathy and caring of the users have that keep the new folks coming back. I hope that you will hang around and read alot ask anything you need and I believe there isn't anything that that's out of bounds.

Stewart

Lgw

I think doctors tend to label them all Alzeimers because the majority are Alzheimers. My DH's doctor did the same, then mixed, the stuck with Vascular Dementia.

dusty 48

Thanks Stewart. That's a long haul -13 years. I guess this is a marathon - not a sprint. I'm better at using this site and learning others as well. So I'll be here.

Lgw, seems the focus is on Alzheimer's. Are Vascular Dementia and atrophy of the hippocampus in the same category? In reading more about this, the hippocampus is often one of the first areas to be affected. So it may be likely that she has Alzheimer's.

mommyandme (m&m)

https://www.webmd.com/alzheimers/guide/alzheimers-dementia

Types of dementia (10 most common)

• Alzheimer's disease.
• Vascular dementia.
• Lewy Body Disease.
• Frontotemporal dementia.
• Alcohol related dementia.
• Down syndrome and Alzheimer's disease.
• HIV associated dementia.
• Chronic Traumatic Encephalopathy (CTE) dementia

Above are a couple references I found that might help. When I took a volunteer respite care training with my local hospice, I remember them saying there are 70 forms of dementia under the vast dementia umbrella. Darn disease!

jfkoc

Hi Dusty...

Diagnosis is extremely important. I think this will help;

Diagnosing Alzheimer's: How Alzheimer's is diagnosed - Mayo Clinic

All of the tests need to be done. Double check to make certain the process was followed for your wife.

Judith

DrMichaelSG

Late weighing in here: But it is true that antipsychotics are contraindicated in DLB, as they make symptoms worse. All dementias do not respond in the same way. Funny how things change....in the early 1980s, haloperidol (Haldol) was the drug of choice for agitation -- and it was used then for ALL forms of dementia (I don't know if DLB was understood at the time -- inasmuch as we'd like to think otherwise, science is not permanent, it changes like the rest of us!). Today, Haldol would be used with extreme caution, as it can cause increased confusion, balance issues, extrayramidal symptoms, and other.

Actually, an ER dose of Haldol made me very, very ill last summer, when I had an acute delirium state after I was prescribed Morphine Sulfate ER. I had only taken 5 tabs over 2 and 1/2 days, and I've never recovered. Today, I'm STILL as "high" as I was during that delirium state (by this, I mean a "high" that is similar to a post-anesthesia effect). The difference now is that I'm not having those terrible panic attacks, visual and classic rock music hallucinations, and delusions (my daughter reminded me that I repeatedly sang a line from one particular song -- it would be very unfair to the group to name the song...sorry!). Somewhat hard to believe, I know, but it really did happen - 5 Morphine sulfate tabs lit the fuse that put me where I now am.

Medications have value, clearly. But as shown by the above and also by a more recent peer-reviewed study on Proton Pump Inhibitors (PPI) as being "causal" (***) of dementias, they can also come with consequences -- both short- and long-term. I remember using soap (came in a plastic green dispenser, cannot recall the name!) when I worked in the ER in the early 1980s....that soap --which we used repetitively-- is now banned by the F.D.A). Caveat emptor. .

Mike

P.S. Once again, I just broke my own, self-imposed rule re. need for brevity....the likelihood that I have a form of dementia CAUSES me to be terribly long-winded.... 😕 (come to think of it, causality can be a very powerful thing)!

*** I place the word "causal" in quotation marks, because even the very best research studies cannot definitively tell us that one thing causes something else. And this is because there may be one or more OTHER things that we have not yet considered or that we do not understand (or things we don't even KNOW about!) that might also be yielding an unwanted outcome. Above, Haldol is empirically thought to be a key contributing factor to a poor outcome for folks with LBD (it is more likely than not "causal"). I don't know what the other stuff might be ...but that's why people who are WAY, WAY smarter than me do the research)!

zauberflote

Phisohex? Hexachloro-something...Washed my face religiously with that in puberty a long long time ago.

SDianeL

My DH was diagnosed 2 years ago and is mid to late Stage 5. Butterflywings posted this and it's very informative. I saved it to my computer. It's very difficult to read this but is necessary info as you understand what this terrible disease causes. Also read the book "The 36 Hour Day" it helped me so much. Here's the link to the Tam Cummings handout packet: https://tala.org/wp-content/uploads/2019/04/Tam-Cummings-LLC-Handouts.pdf

dusty 48

It's been awhile since I've been here so will begin again.

It's amazing to me, if you met my wife and had casual conversation, you wouldn't suspect there was any dementia at all. Unless you asked her what day it is, how long have we been married, etc. She's skilled at dodging and covering for memory issues. Her GP picked up on it though.

She's stage 3 mostly...some areas could be stage 4. But generally she really functions at 90-95% no issues at all.

It is easier for me now knowing the diagnosis and reading about dementia. I can understand the repeated questions, lose of words, and memory lapses.

None of our family and friends have been told and I haven't talked with her about telling anyone. She knows about this but puts it on the level that she's being labeled "stupid". None of the doc and my talking have convinced otherwise. She doesn't know the seriousness of this and long term effects/outcome. Maybe that's better.

She's on two meds for the dementia; memantine and Donepezil. She goes back to the neurologist in October and we'll see what's next.

Talk later.

P.S. SDianeL thanks for posting the link.

Ed1937

Dusty, it sounds as if she has anosognosia. If you aren't familiar with it...... https://www.agingcare.com/articles/anosognosia-dementia-patients-cant-recognize-impairment-210090.htm  

dusty 48

Thank you for the link Ed1937. I did not know of this. Reading link I can answer yes and no to some aspects pertaining to her. She's realized her driving days are done and accepts that, - she can physically drive - it's the navigation / directional that is gone. She wants help and is very appreciative.

The LEAP strategy sounds useful in everyday life. I'll keep that in mind.

DrMichaelSG

Hi Zauberflote,

Yes, the stuff in the green bottle was Phisohex (for better or for worse, I do thank you for the memory)!

Mary Ann T.

We as a family of a dad suffering from dementia, we have had a very bad experience with Haldol, I don't understand it's still proscribed. You can read some here

https://verpleegcollectief.nl/Haldol-Haloperidol-Dementia

FAHNJL

Hi Dusty, welcome to the foxhole. I'm about a year into this thing with my wife she's also a been diagnosed with early onset Alzheimer's, she was 63 when diagnosed. All I would add to the above responses is to make sure that all of the testing is done even though it probably is Alzheimer's. Those are just the odds. But make sure she has a neuropsych test done, all the blood tests, a PET scan and all the other things that are used to confirm Alzheimer's, like genotype testing, lumbar puncture, and the blood test that determines the presence of beta amyloids. There's always a chance that it's not Alzheimer's and in my opinion until you have all that testing done you can't say that it definitely is. And my wife's case, though she was diagnosed with Alzheimer's, her blood test revealed deficiencies in vitamin D, vitamin B12, and also that she had a thyroid problem. The meds prescribed for those conditions have improved her behavior and outlook on life, and to some extent her memory, tremendously. So what I've learned therefore is to have all the testing done. Don't just settle for one or two tests and have the doctor call it Alzheimer's and leave it at that. It's a long shot, but you gotta know.

dusty 48

The testing confuses me. At the first meeting with the neurologist he showed the cat scan and showed the atrophy of the hippo campus area and explained that was the cause of the dementia. He also said further testing could definitively tell what type of dementia it was - if it was Alzheimer's or ? But he went on to say that further testing would not alter the treatment or meds, so there seemed to be little benefit to going through extensive tests, spinal taps, etc.

What's the consensus from this group that have first-hand experience from the patient caretaker perspective?

Thanks for advice/input.

GG06

Hi dusty,

The diagnosis process can be frustrating and confusing for sure. Others here more knowledgeable than I can give you better explanation of the pros and cons of further testing, but for me personally, I wanted to know exactly what type of dementia my husband has. Also, meds that may be helpful for those with Alzheimer's can cause further problems for those with FTD, which is what my husband has been diagnosed with. From what I've read, the various dementias can present in the person differently in the early stages, so knowing the specific type can help with knowing how the dementia may progress. I think in the later stages they are similar.

dusty 48

Thanks GG06, for the insight. Yes, I'd like to know more about her specific dementia too, but it would be more for my benefit than hers. And putting her through the rigors of testing....not sure it's warranted.

We've got our next neurologist appoint next month, so hopefully I'll be better prepared to ask questions.