Are our 'numbers' gone?

ARIL

I emailed and messaged the moderators earlier today, before learning about the study. Now that I too have read the study, I have other thoughts.

First, a user I have suspected of being a bot almost certainly is, since the posts match the study’s descriptions of AI content exactly. But I can ignore one “user.”

Second, although I know I am posting on a public site, in reading the study I feel a sense of violation to see human-generated posts reduced to data points and quoted or paraphrased with the goal of comparing them to AI content. These are real lives they’re messing with here. Ours.

Third, I am saddened to discover that I feel blindsided and forced into deciding whether to delete my account here. That would be such a shame in so many ways, since this forum is by far the greatest source of support I receive in my caregiving life.

I wonder where the Alzheimer’s Association is in all this. Might it be time for a password-protected user-only site? That would have its problems too, but computer researchers might be less likely to think that our verbal representations of some of the hardest times of our lives are freely available to them. (I would be very surprised if the Alz Assn received any financial compensation for that study. I wonder if they even knew about it.)

And yes. A miserable season of life just got a bit worse. I am needing to hear from the @ALZConnected Moderator. Openly and publicly. In sentences written by humans.

SusanB-dil

@Victoriaredux I so agree. The human empathy isn't there. AI, not capable of that, so obviously cannot.

I, too, had an issue about a week ago and I told 'thing A' i was disappointed and that i would leave. 'Thing A' said "good-bye".

We sympathize, empathize, and can cry with one another. Sometimes there is a glimmer of humor. 😢 Please, please, techs, bring that back, and know that this new interaction isn't working.

edit to add: i read part of the link... if I want an abstract answer from AI Chat, I can Google it. When I prefer the human interaction, and maybe I can even help someone, I come here.

Quilting brings calm

I don’t like this. The numbers told me whether I was ‘talking’ with a person new to being a caregiver, in the middle or experienced. The ‘answered’ implies no one else should bother giving an opinion on the topic.

Truthfully I have been wondering for a while if I should still be here. I’ve been in stage 8 for almost two years now. I’ve had some other losses and I’ve been depressed. I’ve been trying to decide if daily checking of this forum is part of my problem. There’s just no end to the number of people beginning this journey and we can’t seem to find a cure.

Back to the topic( sort of) - this change to the forum might be a good point for me to take at least a few days away.

GothicGremlin

@ARIL

I don't think a password protected site would work. The techies here could just give a password to anyone conducting a study and then we're in the same place as we were before passwords.

I think I'm going to email the data privacy officer at the Alzheimer's Association and see what that person has to say.

The email and physical address is at the bottom their privacy policy, which is here. I'll post the contact info in this post for convenience.

Mailing address:
Alzheimer’s Association
225 N. Michigan Avenue
Suite 1700
Chicago, IL 60601
Attn: Data Privacy Officer
Email: [email protected]

Victoriaredux

Yes @QBC, I feel the same way , there is (was ? since now bots with score boards run amongst us ) a bond here- a tribe .

I always wondered how M1 and Crushed and others in Stage 8 pretty much just left here to restart their lives . And wonder if that's healthier but leaving folks starting new here hurts too.

That's another reason I am miffed at AlzAssoc for having so little respect or understanding of the disease process on family and loved ones that they changed how the Board functions without a warning or discussion upfront.

The researchers may have sniffed around without express permission to decide how well we write but that the functioning of the board was changed was a decision to reprogram w/o notice or being cavalier with security -neither good .

Like the former friend of a recently disgraced politician said "Don't bust the Trust."

SusanB-dil

@Victoriaredux - agree on all of that.

I sometimes think of some of the folks 'here'. And I think Michael would have a fit with this. I'm glad Lane sometimes keeps us posted on something. I do miss M1 medical expertise and thoughtfulness. abc123 was a very positive person... and yes, there are others.

There are many here that i appreciate so very, very much… the insights, and perspectives... I cannot list all, or I know I would miss someone. And I know HB brings unique experiences and thoughtfulness.

I have seen a few considering leaving. It has crossed my mind. Since that is a drastic thing, I will wait a bit. and see what the coming weeks bring. I have garnered so much info here, and I hope I have helped in return.

SusanB-dil

Good news - My understanding is that these concerns are being addressed. (and partly because some of us did take the time to let them know how these changes affected us on the forum)

To each caregiver - I hope we each have a decent day

dcare45

I was quite surprised to get a return email. At least they are listening. They also said if there is any additional specific feedback just email it to [email protected], the address at the bottom of the page. Maybe we all got the same email back.

Chance Rider

Hmm, numbers are back, though still seeing “answered”. Like others have posted, I find value in seeing the numbers. TY!

dcare45

Also just saw a BEST ANSWER on a different post. Hopefully making progress. Really don't like the BEST ANSWER thing. Strangely it was the first post so how the heck is that the BEST ANSWER? Maybe first answer? But best answer?

GothicGremlin

I'm happy to see that our numbers are back. I'm sure it's because we were all so vocal about it.

Now if we can just get rid of the 'best answer' and 'answered'.

Still, progress.

ARIL

Yes, I too received the email response, which I found to be thoughtful and encouraging. And yes, I see the numbers are back. Awaiting further developments.

One question: I am now seeing the option to sort posts by “Hot,” “Top,” or “New.” Has that always been there and I am only now noticing it, or is it yet another recent change? I don’t like the idea of sorting by “Hot” or “Top,” since the former sounds silly (“What’s hot in dementia care today?”) and the latter, yet more assessment/judgment, like “best answer.” Yep, I did share this thought with the forum moderator.

towhee

I just recently noticed the sort thing as well and do not like it either, especially since it defaults to "hot". I also do not like the answered thing. It reminds me of the phrase "asked and answered". Why is a question tag even necessary when you can put a question mark in the title? I have been using the "browse all discussions" more often as the format makes it easier to see the number of views and comments. If they do not want to use the word comments there is nothing wrong with reply or response, those terms cover everything.

dcare45

When I received an email back from ALZConnected they said a 3rd party was making changes to the site on their behalf they would check into. I don't know what they are checking or who the third-party vendor is, but it would be nice to know what the point is. Almost every time I log in there seems to be a slight change and not for the better IMO. This is not a gamer site or an influencers site or a clickbait site (I hope). I am not 13 years old and need constant change and I am certainly not here for entertainment, don't need best answer, answered accepted emails, Hot Topics filters. I wish they would leave the site alone. I'm sure if they want to track our comments/posts or inject AI they can do that behind the scenes like all the other sites on the internet do.

GothicGremlin

I don't know if the third party they're using is the same as it was back in 2023, but …. we had a lengthy discussion on this site back then about it. I did a search for the thread, and it is here if you want to read it.

The third party at the time was (still is?) Vanilla Higher Logic. Here's their website.

If you scroll down not quite halfway, you'll see a section on "user engagement." Gamification is top of the list.

Victoriaredux

https://www.higherlogic.com/ai-features/

Very sad. Don't think, Don't communicate human to human , we'll tell you the right thing to do.

Have you noticed lately how many new posters ask a very detailed question and then never log in again to read their replies? Are they bots trolling for info?

SusanB-dil

A couple of us have noticed the JP... answering old posts with technical info and all the same format, with nothing in the profile. ??? With really, little to no empathy.

craftygalinstl

I’m new here. Can someone explain what “the numbers” are? I see some little icons with teeny tiny bubbles next to them, which contain numbers (when viewed at 400%). One is a cake, the next is a keyboard, the next is a thumbs up, and the last is a lightbulb.

ARIL

@craftygalinstl ”The numbers” in this thread refers to a user’s total posts. Yours is now 12, for example. This is a rough measure of a user’s familiarity with the site. In answering newer users, commenters typically provide more detailed info.

SusanB-dil

@craftygalinstl hello and welcome. Agreeing with ARIL. The ' Posts: ' numbers - that is very helpful to know if someone has been on here for one day, or several years. Someone who has just joined could benefit from a lot more info, and perhaps even in just small increments, because this horrid disease can involve so much.

Some have been 'here' for a while, and maybe could benefit from a quick answer to something that may or may not be unusual that has just come up for them.

Victoriaredux

I wish the AlzAssoc would tell us if the "answered" stuff will be going away and what their rule on bots and AI will be going forward. They should have an opinion if NON human outreach is better than human. If not, why not.

IF "Higher Logic" is their vendor , considering its' AI bent -what's the future of this Forum?

My personal real intelligence is telling me : that's not good.

ARIL

Thanks for the extra info about the 2023 discussion and Higher Logic.

My human brain is telling me to be concerned.

What is the AI policy on this forum? It feels like open season.

dcare45

https://alzconnected.org/discussion/comment/282343#Comment_282343

Thanks for the information. I read through the discussion from 2023. I'm only 3 months on this site. In dementia since about 2019. It seems to me that they did not listen to hard to you guys back then or learn who the audience is on the site. I found the people here have been very knowledgeable and helpful. I don't care for AI input on the site disguised as a user, it needs to be identified as AI input. Also don't care for AI analyzing comments, sentiments, trends, etc. to manipulate, oh excuse me, "Personalize" the site and users.

harshedbuzz

For the second time that I have noticed, this "poster" dredged up another thread from Trumpet Swan, whose DM died in April. I pointed this out publicly replying to her specific post. «crickets»

I wonder if the simplest tactic for these thoughtlessly rehashed answers might be to flag them. At a certain threshold they are automatically deleted. Just a thought.

HB

SusanB-dil

Agree. I have flagged that one each time. And it keeps pointing to a specific other website, which is solicitation and generally not allowed.

ARIL

I am a flagger of those (possibly commercial?) posts also.

I am still wondering about the Alz Assn and its policies and practices surrounding AI. After @Victoriaredux made the observation about some of the first-time posts, I have begun to wonder how much of this is being done to train bots with our responses. I am sorry to feel that way, because some of these users surely have real human needs (and some of them do respond back). But all this has created skepticism in me that the AlzAssn could relieve with some public responses and clear policies.

Posting numbers are back, and it seems (?) that “answered” and “best answer” have gone away. We still have “Hot” topics sorting, which seems silly in this context. But the platform changes do seem to have been largely addressed.

Again, this community is important to me. Partly because of its human messiness!

Victoriaredux

Alas , ANSWERED isn't gone. Really sad , a poster asked for help, then asked for help again in a second post quickly after the first when no reply.

ANSWERED was slapped on the question. I referred to moderator - that is just cruel in my book. Or are we to answer our own questions? To be or not to be …..

{just saw a second ANSWERED slapped on today after one reply- it was very good but multiple replies, approaches are what make this Forum great in my non AI book. I wrote moderator "why with just ONE reply was this marked answered- we benefit when we get ideas, help, encouragement from many people. We aren't Apple Support telling people how to stop a blinking cursor.Your AI overlay is RUINING this Forum." }

[I'm also flagging the account that is bringing back 2025 posts and dumping links . Wrote a personal message asking them to stop- no reply.]

SusanB-dil

I've flagged 'that one' each time. It appears to be solicitation for another place.

It's answers are all the same format, and are rather techno-cold.

Chance Rider

I also flag those “bot” type responses. Annoying and does not add to posts.

ARIL

Yeah, OK. I just saw a “Best Answer” and some “Answereds.” I spoke too soon. What a depressing downturn in this platform this month.