our posts are indexed globally

I have had a career in various aspects of computer science for over 35 years. My approach is to imagine any electronic message I send (text, email, message board etc) will be read by everyone in the world. If I am not comfortable with that, I adjust the language or look for a different way to communicate.

I have seen people run into big problems at my job which could have easily been avoided by just assuming everyone in the company will see your email.

All of your posts are public. I assume all of my posts have been scraped and set aside in someone's hopes to find a way to monetize them in the future.

Figuring out the person behind the post requires some work and is beyond the capability of most people. However with advancements in AI, those capabilities will become increasingly available to a larger segment of the general public.

Thank you for starting this thread!

I'm with @Timmyd . I thought long and hard before creating a profile here, but I eventually decided that I was in way over my head with my sister's Alzheimer's/FTD, and I needed good information on these diseases, so I broke down and created a profile. I try to limit the personal information I post here, from the email address I use, to my name, and where I live.

It's concerning to me that there isn't a privacy policy on the alzconnected site. Or, if there is, I couldn't find it.

I found the Alzheimer's Association privacy policy - it's here.

It took me awhile to remember the name of the software company that put together this iteration of alzconnected, but I found it in some of my old comments on this site (April 2023). The company is Vanilla Higher Logic and their privacy policy is here. Here's what they have to say about social media and data sharing:

Social Media

The Websites use interfaces with social media websites or Software Services that are owned and/or controlled by other entities, such as Facebook, LinkedIn, Twitter, Google, YouTube and others (“Social Media Sites”). If you choose to “like” or share information from a Website through any Social Media Sites, if you are a member of a Social Media Site the interfaces on our websites may allow the Social Media Site to connect your website visit to your Personal Data. The information that you share with the Social Media Sites will be governed by the specific privacy policies and terms of service of the Social Media Sites and not by this Privacy Policy. You should review the privacy policy of that Social Media Site before choosing to access and use any Social Media Sites, including interacting with our pages on those sites.  

You can opt out of some of the data sharing.

This is why I pick a monicker using the names of famous ancient people. A web search of my monicker will yield untold pages of that famous person and not me. BTW. I use different monikers for different sites so that they can’t yield any info by aggregating or cross referencing the moniker on different forums.

Update: It isn’t quite as anonymous as I might have thought. A google search of “alzconnect Vitruvius” yields a number of old posts, but you’d have to be that specific. You can do that directly from the alzconnect website as well, so that’s to be expected I guess. And it still doesn’t tell you any identifying about me that you could correlate to anything else. It the price of being able to commiserate with other caregiving spouses…sigh.

Thanks CMC62, I did what you suggested. I don’t like the fact that this site isn’t private to users only. I’ll still keep posting and asking questions, as the help I find here is invaluable. It’s not something I’m reading out of a text book, it’s from people living out these experiences in real time. I’m very grateful for the willingness everyone has to share.