caret icon Back to all discussions

Where is the support for the victims of this disease?

I was diagnosed with Mild Cognitive Impairment almost 3 years ago and I don’t see any discussion for those who are facing this horrible disease.
I see lots of articles and discussions for caregivers but very limited places for this hideous disease to be discussed by the actual people experiencing the battle itself. I don’t want anymore info for everyone except the victims of this horrible condition!

  1. Hi . We hear and understand the frustration that you are experiencing. When our site first started, our community members were comprised primarily of caregivers, but as we have grown, so has the community. We know that we now have people interacting with us who are not only caring for loved ones living with different types of cognitive functioning loss but also friends and family, as well as individuals such as yourself. We're working to create a space and resources for everyone. Two of our contributors have been writing from their personal experiences with early-onset dementia, Kris ( and Holly ( We've also had a number of people share their stories here ( If you're open to it, we'd love for you to share your story, too, and please let us know what kind of information you are looking for. We want to ensure we're providing resources that will benefit everyone. Sending you my best, Patty, Team Member

    1. I am 57 and still working full time and financially support my college aged boys. I have a diagnosis of MCI on record. I worry about what to ask from my employer for a reasonable accommodation other than dictation software. My new young boss is very detail focused. I do my job well, but I struggle with minute details. Things my other bosses didn't care about so I need to learn new habits. Any ideas?

      1. good morning, I am new here and just saw your post. I no longer work but used to have a business. I used chatGPT4 for "everything". I still use the paid version but they have a free version. My thoughts are unorganized and I get overwhelmed when it comes to "details"....I type the subject into CHATGPT like I need a work schedule for the next week regarding such and such all in the way my brain thinks which is chaotic lol....but the software will organize it all. Try the free version and see what you think. It's been extremely helpful to me.

      2. This is a super clever idea, ! ChatGPT, in my experience, is super user-friendly and can be really helpful even with things you wouldn't expect. I am almost jealous that I didn't think of this myself! Thank you, , for sharing this really thoughtful idea. Warmly, Amanda, Team Member

    2. Hi there! Me too! I've been totally blown away by the amount of support for caregivers-, family, etc. For those who have someone with Lewy body......but like zero discussions for Lewy body peeps themselves 🤔 compared to what's out there for others. Very frustrating 😕

      1. I am on my fourth year after being diagnosed and I agree with your comments about those living with the disease. I do not need horror stories of progression and the downfall of caregivers. Our perception and feelings differ greatly from those looking in.

        1. Thank you for being here and sharing your feelings about living with Alzheimers. How are you doing? Our community is here to support you, and we carefully consider our members' thoughts and feelings. Is there any specific information we could help provide to you? We are always here, so please reach out at any time. Respectfully, Nancy Team member

      Please read our rules before posting.