Can you determine by behavior what type of dementia your loved one has?

Palmetto Peg

My DH has been diagnosed with mild to moderate unspecified dementia. He is definitely in the moderate stages right now. He is hypersexualized, always grabbing at me and wanting sex. He is also accusing me of infidelity, and today I found him searching through my phone for evidence. Of course, there is no evidence, but even though he says he believes me, it comes up almost every day. He is also constantly reminding me of how young he looks, and is always asking me if I think he looks his age. Then he reminds me that I have some lines in my face, but concedes that I still look "okay". NO kidding! Who wouldn't have lines after spending time as a dementia spouse?

He also has no short term memory left to speak of. We have been through the depression and anxiety part, and that seems somewhat controlled by Lexapro. He has not done well on any of the so-called dementia meds - i.e., Aricept, and several others with generic names. He loses weight, has a constant upset stomach, and I can't see any improvement in his cognition. He is not taking any of those currently.

He is okay socially - especially in a larger group where the talk is very general. People only realize he has a problem when they spend time with him one-on-one.

My second question is - does it matter what kind of dementia he has? How can I tell what stage he is in, and does it matter? I read here every day and have learned so much, but as we are searching for a new doctor (we moved) I would like to have as much information as possible.

As always, thank you all so much. You truly are a lifeline in this journey!

M1

The Tam Cummings scale is the one usually referenced here for staging. Regarding the type of dementia: frankly no, it probably doesn't matter. Frontotemporal dementia (especially the behavioral variant) is some of the hardest to deal with...but beyond that, it likely doesn't make a whole lot of difference. Nothing short of autopsy really is determinative, anyway.

I just looked but I don't have a current active link to the Tam Cummngs tool. Someone else may be able to post it for you (it was taken down off her website, sadly), or you can also look up the Reisberg scale.

fmb

https://alzconnected.org/discussion/comment/197930#Comment_197930

tamcummings.com/tools

then scroll down to "Dementia Behavioral Assessment Tool (DBAT)"

This is the most current revision of the staging tool (2022) and includes nursing notes. I have found it to be an invaluable resource in gauging where my DH and my mother are and what may develop in the future in their dementia journeys. There are also other tools on the page that can be very useful.

@Jeanne C. I would very much like to see this revision of the DBAT and the Tools page in general referenced on the New Caregiver Help page, if possible. Thanks!

Jeanne C.

https://alzconnected.org/discussion/comment/197937#Comment_197937

Done

Belle60

Thank you for that scale. It is very helpful. I wonder how many notice their loved ones experiencing behaviors but they are not in that stage. In other words, my LO has experienced hallucinations but by all other behaviors he is in Stage 4.

LindaLouise

https://alzconnected.org/discussion/comment/197974#Comment_197974

I have the same experience. My DH is mostly Stage 4, with a few indicators from Stage 5, but also has frequent hallucinations (usually there is someone else in the house, so he will whisper) and delusions, (he talks to his friend Tim, who is a character in a show - Heartland - that we watch!) I think I am understanding the differences between delusions and hallucinations, but my apologies if I'm getting it wrong. So much to learn!

I guess you just go with the one that seems to fit most of their symptoms. I think the Stages are helpful so we caregivers can be prepared for what is next, and also make sure our safety structures are in place, hopefully before needed.

Jo C.

Yes, it does matter which type of dementia is present. Treatment for one type of dementia can be contraindicated in another and behaviors and advancement of disease can be different.

Example: Lewy Body Dementia is a dementia that does not do well with most meds used in other types of dementia and using them with LBD can make things worse.

The best approach to managing well when dementia is present, is to see and have a dementia specialist as part of the healthcare team to ensure an accurate type of dementia diagnosis is made and that treatment with medication is appropriate so as not to make things worse.

Well worth ensuring that this is done. Our Loved Ones (LOs) cannot do this or plan for themselves; they must depend upon us to do it for them and to do it well for their very quality of life which also affects the caregivers quality of life.

J.

M1

Overlap is common. typically you stage someone by where the majority of their symptoms fit.

Ed1937

Belle, it is not uncommon for people to have symptoms in two or more stages. Many say if you're LO has symptoms from say stage four and five, you should say he/she is in stage five. Sometimes they might have symptoms from stage four and six, but skipping over stage five. In my opinion, it's just better to deal with the symptoms as they come, and forget about what stage they are in. Although it may be helpful in guessing what may be next. But that's my opinion only. I guess the reality is that we all want to know the stage. But is a number really that important?