Hoping to Start an Ongoing Conversation Space for Those Living with Dementia
Hi everyone ,My name is Kerry. I’m living with dementia, and like many of you, I’m navigating a lot of feelings and emotions. I’ve reached a point where I’m really craving connection with others who understand this from the inside, not as caregivers, not as observers, but as people living it every day.
I’ve noticed that many posts here are one‑time questions, and while those are helpful, I often find myself wishing for something more ongoing. A place where we can return, talk honestly, and build a sense of continuity with people who “get it.”
I’m hoping to start a small, steady discussion group just for people living with dementia. A space where we don’t have to explain ourselves, apologize for forgetting, or pretend we’re doing better than we are. A space where we can simply be real.
A place where we can:
- Share the everyday moments—good, bad, confusing, or funny
- Talk about the fears we usually keep to ourselves
- Celebrate the small victories
- Support each other through the tougher days
- Come back and continue the conversation over time
If you’re someone who wants a consistent, understanding place to talk with others walking this same path, I’d love to connect. If a few of us are interested, we can shape the group together in whatever way feels right.
We don’t have to go through this alone. I’d really like to build something steady and supportive with others who feel the same.
With Hope,
Kerry
Comments
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Hi Kerry, I can relate to everything you wrote here. I was diagnosed Summer of 2024 with early onset Alz. I receive bi-weekly infusions (leqembi). I'm grateful for the treatments, but I long to be in touch with others who know first-hand how we feel. I've found a few support groups here and there but it's not consistent enough or it always ends up geared more towards caregivers.
So, yes, I'd love to connect with you.
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I'd love to connect with others with Alzheimer's
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Hi Laura,
I know the feeling - It is so different to be able to talk to people that are going thru this journey first hand. I was diagnosed in 2023 and had retire early. I have 2 APOE4 genes and have decided against the infusions due to the increased risks associated with the genes.
I will start a group that we can add members to who are interested in ongoing conversations. I'm excited to hear from you.
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Hi RosieLou,
I'm excited to hear from you. I will start a group that we can add members to who are interested in ongoing conversations.
I'll work on it tomorrow.
Kerry
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I would love to attend as well thank you!
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Hi
Hi Roxygirl!, I just sent you an invite to the group. I look forward to getting to know you. This Is Us: A Living With Dementia Group.
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Hi everyone living with early-stage Alzheimer's or Dementia. I started a group called This Is Us: A Living With Dementia Group.
If you’re looking for a steady space to check in, share your experiences, and get to know others on a similar path, you’re warmly invited to join our new discussion group.
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I would love to join. I just received the news today
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Oh I am so sorry💜💔💜! From someone who has been there, those are the hardest words to hear. It is not easy, but it does get better. I will say connecting with the Alzheimer's Association changed my life. I'm so glad you are here. You are not alone. I will send you an invite to the group.
In the meantime, if you need someone to talk to anytime, the Alzheimer’s Association Helpline is 800‑272‑3900. They’re there day and night. They are amazing.
I will check in later today.
Kerry
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I would like to join. I received a positive Alzheimer’s blood test on February 3 and we’ll have a scan on March 8th. 62 years old.
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Hi Constance,
I'm so sorry to hear about your blood test results. Hearing those words for the first time is incredibly hard, and it takes time to find your footing. I’m really glad you reached out. You are not alone in this. I’ll send you an invite to our online community — it’s a place where people living with dementia can talk openly, share what’s real, and support one another.
If you need someone to talk to at any point, the Alzheimer’s Association Helpline is available 24/7 at 800‑272‑3900. They’re wonderful listeners and can help you navigate these early days.
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Hi,
I would like to join this group as well. I was diagnosed after a seizure, positive biomarkers for MCI, but asymptomatic. I feel like I might have some symptoms now, but hard to tell how much is the disease and how much is the anxiety associated with this whole process.
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Hi Sara,
We are happy to have you. I will send you an invite.
Kerry
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Hello-
I am interested to join as well. Recently diagnosed MCI.
Scott0 -
Hi Scott,
I Just sent you an invite.
Kerry
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I’d like to join. I was diagnosed in September ‘25 with early onset (I’ll be 65 in November). I’ll be starting Leqembi on March 9th. I’ve been looking into my memory issues since I first mentioned it to my primary doctor in 2022. Everything here takes forever. Getting appointments scheduled typically takes 4-6 months, so I don’t know how far along I really am. I’ve been in waiting mode for so long!!! Now that things are moving, I am feeling less anxious. I feel like I’m carrying a giant clock on my back.
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Hi Ingrid,
I'm so glad you are here. I will send you an invite and see you in the group.
Kerry
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I would love to join your group. I’m 62 and I was dx with MCI via Cognitive Testing approx 5-6 yrs ago. My MRI did not show anything significant back in 2022 and my insurance will not approve a PET scan. I don’t think my neurologist is taking me seriously with my symptoms and I would love to know what steps others have taken to get the help they need.
Thanks! Paula0 -
Hi Paula - I'm sending you an invite now.
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I’d like to join your group as well. I’m 64, diagnosed MCI 2 years ago after 2 years of olfactory hallucinations, among other symptoms. Doing well on Aricept and many lifestyle changes. Mom had ALZ, probably onset around the same time as me.
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I would like to join your group. Was diagnosed with early onset 6 months ago.
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Hi, Kerry! Where will you send the invite? I’m fuzzy about how this group works. (My brother’s name is Kerry!)
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HI Ingrid - you are in. I see you as a member of the group now. I think if you click the link below it will take you there.
This Is Us: A Living With Dementia Group
I have joked my whole life that my parents wanted a boy because I have the masculine spelling and as a kid I always had to look for the items that had names on them (Pencils, pens, license plates, etc.) in the boys section.
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Hi all! If you have asked to be invited, I have added you to the group. If you haven't been in the group yet simply click the link below and it will take you there. Once you get into the group setting. Please say a quick hello with add a quick intro (there is an open discussion) so we know you are active.
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Hi Kerry - I'm interested in the group you mentioned. I'm 57 & was formerly diagnosed via lumbar puncture & biomarkers 3 years ago. I had trouble finding a group for early onset & was eventually placed in a virtual group for Alz but not specifically for early onset. That group disbanded 1.5 years ago as the facilitator wasn't able to continue for personal reasons & I've been looking for a group to meet this need. Thanks, Jo
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Hi Jolene,
I'm glad you found us! I look forward to getting to know you! I have learned in my short time trying this that this site is a bit "wonky" to manuveur. Please share a little bit about you in the intro section. You should be in now.
Kerry
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Kerry,
Have you given any more thought to moving this group to a zoom format? I have an account so meetings could be scheduled. Your thoughts?
Sara
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My name is Gail and this is the first time I am posting on this site. I have been noticing the increase in my memory problems for the last two years but I was just diagnosed with Alzheimer's a couple of months ago. Both my son and my husband have passed away and I find myself trying to deal with my decline by myself. It would be nice to talk to some other people who are experiencing the frustration and anxiety associated with this disease. I would be very interested in being able to have ongoing with who are traveling this very difficult road.
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Hi All,
Everyone that is living
Hi Gail, I am so sorry to hear about your diagnosis. Like many of us, we better than anyone else and realize something is wrong even before we get the test that confirms it. I’ve added you to the group, please feel free to look around, when you have a moment, please introduce yourself
I’m glad you’re here0 -
I am in need of this type of support group. I was thinking everything you said I need a connection. 56 Early onset unable to take infusions. I feel defeated.
Thank you Diane
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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