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Tell Us About Your TrialMatch Experience!
The Alzheimer's Association TrialMatch is looking for your feedback! To help us improve the tool and better support people living with dementia, caregivers, and healthy volunteers in finding clinical studies, we invite you to complete a brief survey. The survey takes less than five minutes to complete, and your input will…
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Early onset support
Hello, I'm Scott and riding on this journey with you. I received official diagnosis this past February 2026 then jumped on the merry-go-round of initiating treatment. After many pitfalls and several months trying to gain access, I ultimately joined a clinical trial for a new drug. Yes, the trial comes with its own…
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Phantom smells
I’m 63 and have had phantom smells for almost 2 years. My primary care doc dismissed them 1+ years ago as Covid-related. Since then I’ve begun having memory problems, definitely a personality change (much crying/depression), and difficulty problem-solving. My mom had EO and my dad some form of dementia. I had a PET scan…
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In-person group for those with Alzheimer's
My wife is in the mild stages, and is having a hard time talking with others in her situation. Since her reading and writing skills are affected, an online forum is not working. Any suggestions of groups for those who have the disease?
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Early Onset Alzheimer's at 49
Hello, I was diagnosed with early onset Alzheimer's in October at the age of 49. I've had the the test and it does show I have one variance of the APOE/4 gene and the only kind of Alzheimer's we have my family is on my mom's side and they were diagnosed in their middle to late '70s. This is just been a shock I knew…
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Waiting on an official diagnosis
I am 60 in July It seems like it is test after test. I have had all kinds of blood test. My next test is a pet scan. How long before I get a diagnosis? Not knowing is really hard.
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I have EO alzheimer's
It took forever to accept this diagnosis. My family has always held me to very high standards. Along with the diagnosis they all stopped contacting me. I have begged anyone even my husband to come talk to my doctor during my appointments. They all tell me this is my problem. My doctor thinks I need to find alternative…
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To choose or not to choose
I'm recently diagnosed positive for early stage Alzheimer. Currently I am taking a prescription to help with some memory issues. My Neurologist wants me to decide on one of two intravenous medicine. I am not crazy about the possible side affects. I would like to hear from someone who is on this one and of any side affects.
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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…
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Newly Diagnosed Physician
I am a 60 yo newly diagnosed with Alzheimer's. I am a retired Family Physician who noticed issues approximately 18 months ago and was diagnosed with MCI. I stopped practicing medicine and was given disability benefits. I am fortunate to have had that option but despite all my expertise the process of getting a definitive…
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Deleted
Deleted- wrong discussion.
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Brain swelling (edema) on Kisunla
I'm hoping that others who have had brain swelling as a side effect of Kisunla can give me some ideas and some hope. I've had a really easy time with Kisunla (Donanemab) since I started in August, and all of my MRIs were perfect. There was break in MRIs from month 5 to month 7, but when I had my MRI last week in…
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49 Early Onset
I was finally diagnosed March 16th after 3 years of trying to get help thinking I was going crazy. I’m really angry that a neurologist dismissed me years ago claiming I was flunking the cognitive tests on purpose for attention. Fast forward and now I’m moderately effective with this nasty disease. So many emotions
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Working Through This New Diagnosis
I am now 57 and was diagnosed officially earlier this year. The doctors had an idea a few years ago, but after suffering the first Covid in 2020, they were unable to tell what cognitive impairment from the virus compared to dementia due to Alzheimer's disease. I had a 3-hour cognitive eval, the doctors agreed to wait to…
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In my early 60s. At the beginning of this ..
Hi, Are any of you out there going through what I am? Very mild symptoms, waiting for complete diagnosis. Anxious and frustrated.
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New to Alzheimer's
I'm 58 years old and have been diagnosed with early onset Alzheimer's. I would like to talk with those who have early onset also.
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Blood test results - concerned
Received my blood test results last week and they seem concerning to myself and my husband. Haven’t heard from the NP to discuss the results. I called and left a message - feeling frustrated Phospho-Tau(217), P plau217, P 0.313 pg/mL High REFERENCE VALUE Negative: ≤ 0.185 pg/mL Intermediate: 0.186-0.324 pg/mL Positive: ≥…
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Doing enough?
My wife is 56 years old, she was diagnosed with Early On Set 2 years ago. She has progressed into early stages of moderate. The day she was diagnosed we were given basic slow down med and off we went. They said there were clinical trials we could try etc, but when I look it doesn’t seem to fit her age range etc. I feel…
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Looking to connect in or near Houston Tx area
Hello friends- I am newly diagnosed Early Onset. I'm looking for support groups, counselors or therapists/social workers who can offer support in this stage. I am in my early 50s, still working, kids in college, mortgage, mom with Alz. I need help and a place to be able to talk about what this means for my life. Like,…
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Early-Onset ALZ Diagnosis
Hi! I am 56 years old, and I received my early-onset ALZ diagnosis two weeks ago. I had a positive Amyloid & Tau PET scan. I'm waiting for my APOE test to come back to decide whether I can or will move forward with donanemab treatment. I'm very emotional, sad & scared of the side effects and my future
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Excellent information on infusion drugs
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Kisunla vs Liqembi
I was recently diagnosed with AD after having MCI for the past 5 years. My neurologist is recommending that I start a monoclonal antibody treatment regimen and has suggested Liqembi. As I do my own research, it looks like Kisunla is considerably more effective. It more aggressively removes existing plaque while preventing…
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Lequimbi eligible?
My husband just diagnosed with AD. His bloodwork “two copies of APOE4 allele were detected “. He also is on Eliquis blood thinner for A fib episode in March 2025. No recent Afib. We have upcoming neurology appointment and I have put my hopes on Lequimbi. After doing research it seems he may not be a good candidate. Then…
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Early onset support group in Illinois
My spouse has early onset Alzheimer's . We live in Elgin Illinois and I was wondering if there are any support groups that meet maybe weekly in the Northern Illinois area. I feel like it would help greatly if she could meet with others who have reduced memories in a small group setting. They have a memory cafe here that…
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New diagnosis, new to group. Having a rough ugly cry day.
I have been very emotional, ugly crying today. Today is hard, others are not- those days I am "numb". I am 41, married for 19 years, I have 5 kids ages 8, 10, 17, 18, 20. I have tested positive for PSEN1 which is one of 3 variants known to cause young onset Alzheimer’s. I have had cognitive symptoms since August 2023. I…
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Anyone experiencing body pains
hi am am newly diagnosed early onset dementia, My doctor is still finding out what kind dementia I have My understanding is I have Alzheimer’s in my blood but not reached my brain yet , what the heck does that mean ? I am having a Pet scan next , I kind feel like my doc just dumped me or put me on hold , I don’t know if…
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Focus on the Now, the Positive, the Moments
My name is Vickie B. I turn 50 in 4 days, and I've been living with younger onset Alzheimer’s since 2021. Have I cried? Yep- a few short times. BUT I have made it my mission to not stay/live in my sadness. I choose daily to see and find beauty and joy around me. And if I have a bad day, I give myself some grace. Honestly,…
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I am still waiting for the actual diagnosis
I have a neurocognitive disorder and I'm waiting for my neuropsych testing so I can be diagnosed. This is very challenging and I was seeing if there is anyone out there who has or is going through this. Any advice or stories would be great.
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My partner
I was recently diagnosed in early December and have been more worried about how my partner is going to handle being a caregiver…. He is a very sensitive thoughtful and caring person but also suffers from depression. Hence my concern….he did go to one caregiver support meeting.
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Communication
First post, so forgive me for any missteps. My DW (61) was diagnosed with Alzheimers earlier this year, but symptoms have been present for about 3 years. Our major issue seems to be communication......it always seems to be confrontational. She feels I do not have any patience (somewhat true) and I feel she constantly…
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Working?
I’m in the stage in which I recognize my own diminished cognitive skills, but don’t have a diagnosis yet. My job performance is suffering, which is very stressful. How did you navigate this phase? Which came first, your diagnosis or problems at work? Did you resign, or use long term disability? Our family relies on my…