Support Group for Those of Us Living With Mild Dementia

Hello!
I was diagnosed with Lewy body disease 2 years ago and while I don’t have dementia yet, I was also diagnosed with MCI. I am following this discussion with much interest. I also feel as if I am on a “runaway train “. I still work, but I can tell a difference in my cognitive abilities, as they seem to be slowly declining. It is nice to be able to find a group such as this so one doesn’t feel so isolated. This is my first post. Regards, Ashley

@ashley43725 , welcome. I'm tagging fellow MCI members like @SusanEllen66 @edsutton @lhb09876 @mablesmith @peat @fletchette @gardenia123 @osteocurious to join me in welcoming you and introducing themselves.

Ashley, as you notice your cognitive abilities declining, what tools, aids, or tricks have you adopted to help you?

Those of us Living with mild dementia.!
Hi my name is Craig and I’m living with MCI/ Mild Dementia.
Well i come here to read others experience, strength and hope and remind myself i am not alone in this, i learned this in the rooms of NA and AA for many years.
I am getting to the point where i need to focus on shorter periods of time instead of tomorrow or next week, i focus on the next :30 minutes or even 5 minutes. Not all the time but today it was.
I do a lot of note taking; checklists in particular as i may forget what i was doing while I’m doing it.
So i look at my list and recognize what i was doing and pick back up.
This was very apparent today and for that i am Grateful.
I am grateful that i am aware, maybe not in the moment but at some point i am aware of my deviation.
I share these things; my experience, strength and hope because today was a rough day but i made it through.
I am trying to stay positive and fight off depression because where there is comfort in depression, there is no progress and depression has a terrible way of pulling me in making me think it is a safe place to be, but its not.
I suit up and show up each day, no one day is like the others. Never knowing what level of clarity (cognitive ability) i will have at any given moment.
My mind fades sometimes and find myself in the middle of a room where i must have just been staring at God knows what for how long in a daze.
Found myself standing at my bathroom sink eating a slice of pizza; its like i come out of a little dream or something.
Can you relate to any of this ?
Enough about me.
Thank you all for your experiences
Craig

@ashley43725
Hello Ashley
I recently joined, started following this group.
I am 59 and my onset started a couple years ago with cognitive decline and hallucinations lasting for a couple of months. And then it slowly went away, and I went went back to whatever normal is, there were still some hints of the cognitive difficulties but I forged forward as I was having some heart issues at the same time that were resolved.
But then June 2025 it all came back.
I too am still working, but just not capable of doing what I once was because I can’t sustain the same level I used to by far .
but I still help where I can and I’m surrounded by a lot of support at work.
I felt alone in this and that’s why I searched out this chat.
Hope you get what you need from here.
Know that what you share and talk about will more than likely help others at the same time.
Craig

We can all benefit from simplifying our home self-care environment.
For example, on the bathroom lavatory:
Toothpaste, one tube
Body lotion, one squeeze bottle
Etc. for self care products, just what's needed and not similar to other products.
Having space between objects makes it easier to recognize and find them.

Hello All!
The replies are appreciated!
I have a strict day to day routine, I go to bed at the same time , get up in the morning at the same time and have arranged my daytime activities accordingly. Fortunately my work schedule is flexible enough for me to arrange it also. I do not share my condition to my fellow employees as the nature of my work would preclude this.
I have had a couple of hallucinations, but my biggest hassle with Lewy body is the epic dreaming. My nights are spent dreaming about 80% of the time and I wake up feeling like my mind has gone through a wringer. I tried klonopin, but the morning after hangovers interfered with my day.
I enjoy building scale models, planes, ships etc to help keep my mind flexible. I do find myself envious of “normal” people, those who do not have my concerns. Keeping busy also helps me to focus on other things in life , as I have noticed that such a disease can quickly overtake every aspect of your life.
I am currently enrolled in various research studies which I feel positive about, these include pet scans and MRI scans and the ever popular spinal tap.
I am 63 and still drive mostly to work and back. I forget names , appointments, medications and have a devil of a time following movies .Documentaries , however, are easy for me. Thanks again for the posts, Regards, Ashley

@ashley43725
O My gosh.
“Epic dreaming” is a perfect description.
I thought it was just me.
Was telling a family member the other day about my dreams and that i had never experienced dreams like this and i didn’t know why this was happening.
Sleep cycle has definitely been affected.

You can get a prescription for a sedative, but as I said the “hangover” has to be considered . It isn’t just you- pretty common in diseases like ours. Hang tough, Ashley

@colleenyoung
I do a lot of puzzles, word games, math games. I also listen to music, different genres for variety. I take daily half hour walks. I do art puzzles and go,to museums. I also follow the MIND diet. There’s lots of reliable and valid data to support this diet.
Once I got used to doing these things they have become how I live now. I was diagnosed with early vascular dementia last fall. I’m 77 years old and will do what I can to slow this disease down.

My dear friend Charles was my mentor when I was a teenager, and friend for life.
He was deeply interested in many things, music, theater, art, woodworking, traveling.
As he aged he developed several health conditions including some stroke caused cognitive delays, but his curiosity and delight always brought him back to life.
At 95 he was blind and wheelchair dependent. He would visit the museum with his care worker. She would describe the paintings and they would talk about them. He still enjoyed art exhibitions and was delighted by her growing interest in art.