Are our 'numbers' gone?

I also noticed that this morning. I agree, hope they come back.

I agree. There is so much information that can be shared with someone new, but someone who’s been here a while that information.

I can't find an announcement of the Forum changes anywhere. At the bottom of the screen the date is still 2024.

If they want to just flip this to some AI automated box , that's the end.

Oh, never mind. I found a Best Answer. Yeah, I don't like that either. Would not be surprised if it is some AI crap.

I found a "Best Answer" in a post. Titled

How do I pull my godmother out of constantly wanting to go to her childhood which no longer exists?

Under caregiver general topics. Have not seen an "already answered" yet. I'm on a laptop so I don't know about the Ipad.

So far it appears that most changes have come in the general caregivers board, although user posting numbers have disappeared everywhere. Why would that be?

The “best answer” thing seems to have shown up only once so far, although the notation “Answered” appears on several posts—after just one response. I don’t like this, since it implies that the thread is done—and we could already tell whether anyone had answered based on the response number provided.

If the Alzheimer’s Association is trying out new procedures on this general board, I vote no on all of it. Do they not understand how a “support” group works? (Love the “broken toaster” comparison from @Victoriaredux!)

@ARIL I'm absolutely where you are. This isn't a competition. Each of our experiences are unique to us - the overall trajectory of our LOs may be similar, but no two cases of dementia are exactly the same. A best answer for one may not be the best answer for all. Not to mention that we're all here to help out others and to receive help when we need it.

I use the numbers much the way @SusanB-dil does - I tend not to assume much experience or knowledge from someone who is new (and so I give a longer response), versus someone who's been here awhile, where I can use a little more shorthand.

Ugh. Nothing like a little AI slop to make a miserable situation more miserable.

@SusanB-dil

Try typing out Dick Van D*y*k*e*'s name out and watch how fast it gets deleted.

Anyone have transcripts from 1960's comedians that worked "blue"? Let's post them —maybe if the little AI darlin' overheats they'll yank the plug.

At least we aren't a tourette's support group - all they see is a billboard size "DELETED" when they log in .

@Maru Thanks for this input. You bring up a great point: Even users who are “awarded” best answer are likely to feel distress. I know I would be irritated by such a designation, and it might discourage me from involvement.

Agreed: These changes are not helpful. Dementia care does not lend itself to the ones and zeroes of computer code. If any arena requires humanity, this one is it!

The situations we discuss are so complex and complicated. The short or even longer posts are not enough information for anyone to know the best answer. Yes there are a few universals (see a lawyer, never argue) but even then there an be circumstances we are not aware of that maybe left out left out. I try to look at the problems presented here as a big brainstorming session. Sometimes one idea sparks another. If I get variations of the same answer from different people that lets me know what direction I should go. Yes, there are occasional responses that are a bit outside the norm, but we have all had different experiences. I look for ideas, I filter out anything that doesn’t make sense in my situation.

As my cousin would say, “Preach, sister!” 😁

The 2025 Alzconnected Community Guidelines promise humans:

“Purpose of Community: ALZConnected® is an online community where people can come together to share questions, experiences, and receive support from others impacted by Alzheimer’s disease and other dementias. This community is intended to provide peer-to-peer support in a safe and welcoming environment where members feel connected and understood. The Association encourages participants to be a part of this growing community of strength and support.”

I have found this to be true, owing to all of you. I do not welcome intervention by any non-human agent. And YES to “brainstorming”!

@dcare45

I think sending a message to the moderator is a great idea - I'll make sure to do it before the end of the day today.

So…….

I went through the ACM that @Victoriaredux cited. It's long. And disgusting.

I think one of the things @ALZConnected Moderator could have done was to post something about participating in this study so that members could comment on whether or not we wanted to be guinea pigs. Legally, are they required to do this? Nope. But, by informing us about their participation, they could have prevented the bad will that they are currently generating.

Apologies for my "verbosity" (see chart below) in advance, but I'm going to excerpt some passages from the report, just so we all know what we're looking at.

From the report:

We collected the dataset of the entire r/Alzheimers and ALZConnected
communities—1,000 posts and 12,429 comments from r/Alzheimers, and
10,277 posts and 79,663 comments from ALZConnected. We prompted each of
the posts in this dataset as queries to GPT-4.0-Turbo.3 We employed
natural language analyses and statistical tests to measure linguistic
differences in AI and OC responses across the dimensions of (1)
psycholinguistics, (2) lexico-semantics, and (3) content.We
contextualize and situate our analyses based on a rich body of prior
work in psycholinguistics, social media analytics, and natural language
processing.

—

Privacy, Ethics, and Reflexivity. This article used publicly accessible
social media discussions on OCs and did not require any direct
interactions with the individuals. Hence, it did not require an ethics
board approval. However, we are committed to the ethics of the research
and followed practices to secure the privacy of the individuals in our
dataset. We recognize the sensitivities of our study in terms of
revealing the identities of the individuals. This article only presents
paraphrased quotes to reduce traceability yet provide context in
readership. Our research team comprises researchers holding diverse
gender, racial, and cultural backgrounds, including people of color and
immigrants, and hold interdisciplinary research expertise in the areas
of human-computer interaction (HCI), computer-supported cooperative
work, social computing, ubiquitous computing, and Health Informatics.

(bolding done by me)

—

method and approach (overview)

We simulated scenarios of prompting AI chatbots (AI), primarily OpenAI’s GPT [7] with
AD/ADRD-related queries, gathered from OCs, particularly r/Alzheimers
and ALZConnected. Methodologically, we conducted (1) a small-scale
qualitative analysis (Section 4) and (2) a large-scale quantitative
comparison of AI responses and OC responses (Section 5).

ALZConnected:
ALZConnected is a freely accessible Web site (alzconnected.org) housing
OCs and discussion boards dedicated to patients and caregivers coping
with AD/ADRD. Here, community members express AD/ADRD-related concerns
and provide and seek support from one another. Although a more recent
OC, it has already grown a significant userbase and is supported by the
Alzheimer’s Association (alz.org). This community has multiple thematic
discussion boards under (1) living with AD/ADRD, and (2) supporting
someone living with AD/ADRD, further broken down into seven
sub-categories (see Table 1).

In total, we sampled 31 posts with
761 comments from r/Alzheimers and 70 posts with 463 comments from
ALZConnected. Table 1 summarizes our data sampled across different
communities. These posts span a variety of interests, such as seeking
information (e.g., “where to find good gear for my dad?”), emotional
support (e.g., “Today, I lost my mother. I desperately wish I knew where
she is now. I keep going to her room to check on her and hold her
hand.”), and advice (e.g., “My dad has had Alzheimer’s for 5 years, but
now it is getting worse [.] Any advice on what else could be tried.” Our
sample also contained people’s self-experiences in AD/ADRD management
and volunteering to help the community, such as, “My father-in-law died
last week. I am a former caregiver with almost 10 years of experience.
What now? I want to help but do not know where to start [.]”

Findings

On ALZConnected, we also noted a few posts from people with younger-onset
AD/ADRD. Other community members responded with emotional and
informational support and also shared from their experiences.

And here's one of the charts:

I'm assuming "OC" means "original content." If so, great, we're being graded on vocab, grammar, etc. I thought I was done with all of that! (sarcasm) 😒

I just watched the Dick Van DELETED show. A blast from the past I was checking on this.