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 something was wrong but I just thought I was getting old.
My career for the past 25 years has been IT services and analyzing and the last job I had this summer or tried to get I got fired because I couldn't complete a certification for the first time in my life.
I have to say this is extremely humbling and I think I'd rather have cancer.
Right now Im going to speech therapy and physical therapy and doctor's appointments and dealing with disability.
I'm allowed to drive locally and on the highways with no interstate but they let me know that I usually isn't long before they I fail the test, I won't be able to drive it all.
This just isn't what I thought my life would be and I'm just trying to catch up with it all. I thought I had a lot of time but I was diagnosed with the 4-8 year prognosis.
Jen
Comments
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I was just diagnosed at 51 on December 28th 2025. I have been a orthopedic level 1 xray tech for 13 years. I got fired in 2024 and had 4 jobs since. I can remember how to do all things xray but can't learn new admin processes or names. I just lost a job at a grocery store because I got the wrong day.
Ive never been this depressed in my life. I dont know what to do.9 -
I totally understand that. The are some great jobs for IT but I know I'll just be fired again.
My life is Alzheimer's Physical therapy, speech therapy, neurologist,PCP, homework to keep what I do have. It SUCKS!! I hope they figure this out for us friend! ❤️
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Oh goodness you have a lot to deal with and process! I wish I could impart some great wisdom but I too am at a loss. Do you a a local Alzheimer’s support group you could attend? I found calling the Alzheimer’s hotline very comforting and helpful.
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Hello,
My DH was just diagnosed earlier this week (he is 48), We do the drive test next week. He won't really talk about it. Trying to figure out how to help him the best. Can you tell me more about OT and PT? And what do you do for homework? We just filled out his Long Term Disability paperwork and were advised to apply for SSDI, any advice on that front?
The Dr would not give a prognosis. Just to take it a day at a time.
Bless you.
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I'm sorry for your husband .this will be a new journey and it can be trying definitely sometimes.
When I was actually diagnosed I was probably in a funk for a few months until I could absorb what was happening and I have a choice to make and that was do I just lay in bed all day or do I do something and I've chosen to do something.
II start speech therapy almost right away and what they do is they do an MMSE and several other cognitive tests They check to see your remembering things can you name names if they read a story to you They even have a big TV that we sort of work on being able to hit the numbers before they fades It's just that's what usually the the test is as far as driving that's what I took It will be an extensive TV type test to see how well could follow the directions you can follow the numbers you can follow this or that I can drive but I cannot drive on interstates and I gave up my car a few months ago.
As far as PT it basically works your muscles because most of us are when we're diagnosed early it's already been happening for 8 to 10 years usually in that time frame and during that time frame people without realizing i get lazy You don't go for walks you don't do a lot of outings anymore and the PT is basically to help you build up muscles in your hips and your legs and in your arms and to try to get you to walk regularly and without having to feel scared about falling. I'm doing pretty good on the walking I do use a cane if I have to walk a long way like into a grocery store or something and cuz I will my muscles will tire very quickly otherwise if it's just a run into like Walgreens or something I can run in and leave.
As as far as what you can do to help your husband is just to be there let him have his down time when he's diagnosed some people just need to internalize what has happened and hopefully he will choose to live usually we have a 4-8 year prognosis at this stage I'm stage 3 and he can choose to do nothing during that you know 4-8 years or you can do everything you can right now to make up for when things go badly later.
As far as driving if he gets the same sort of you can drive on regular streets but not on the interstate that will sort of you know take power away from him a little bit and and it is really it sucks. Because usually people like us have been independent maybe living on our own since early I've always been in control or is always been the helper and when this happens to those people like me you just think your world is over but it is not.
You can Go out to eat with friends even though it's not brain food Have those moments laugh with your family and friends Make jokes You know at some point he'll he'll hopefully he'll absorb what is happening and you almost have to be sarcastic at yourself you know and not take it too seriously because it's a terminal diagnosis after all but the last thing that anyone needs to do with that diagnosis is to cease to live.
And right now I've actually been interviewed to be the face of Nebraska early on set Alzheimer's If I win basically I will go to colleges Chicago Washington DC to speak up for those of us with early on set Alzheimer's and how removing grants and things for Alzheimer's has greatly impacted this disease as it's one of the growing number of diseases that's getting worse consistently.
If you'd like to chat anytime just give me a message I'll be happy to help you with questions as I can It will be hard but like I said just don't let him stop living but he needs to make that decision for his self.
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Yes. Contact Social Security right away. With a note from your neurologist and a few questions asked of both you and your spouse, you can apply for SSDI (Social Security Disability Insurance.) This is a really big help as it will give you 100% of your SS benefit even though you have not reached the age for the maximum benefit because you have Alzheimer's. We applied for my husband and not only did we start getting the full benefit monthly but we also got a retroactive SSDI check from the time of his official diagnosis. Also, he was automatically enrolled in Medicare a few months later. He was diagnosed with EOA at age 62.
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Hi, My name is Lori. I was diagnosed with early onset Alzheimer's 2 years ago at 48. I had been on the Lequembi IV infusions bi weekly for 18 months. I have finished that and will be starting the maintenance infusions once a month. I have APOE 3 and 4. I am stage 3 in my decline.
I have medically retired from my job that I have had for 21 years. The stress of my job was exacerbating my symptoms and my neurologist put me out on disability because of it. I heard that learning a new language helps with your memory so I started learning Korean. I really like my K-Dramas so I figured it was a good place to start.
It would be nice to talk with other individuals who are experiencing the same thing as me. I do not see a lot of support groups for early onset Alzheimer's so I feel very alone in my journey. I look forward to talking with you and getting to know everyone.
Thank you for listening,
Lori2 -
Hi Lori
I am Linda, age 63. Diagnosed at the beginning of the year I’m doing the Leqembi infusions now. I just finished #5. I also have APEO 4 and 3. I’m going down to 20 hrs a week starting in July. I’m not sure what you mean by stage 3 in your decline? Can you explain that a little for me?
I’m sure all the changes have been very challenging and kudos to you for learning Korean!!Thanks for any advice
Linda
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Linda,
Here is what Mayo Clinic says for the stages of Alzheimer's.
There are generally five stages associated with Alzheimer's disease:
- Preclinical Alzheimer's disease.
- Mild cognitive impairment due to Alzheimer's disease.
- Mild dementia due to Alzheimer's disease.
- Moderate dementia due to Alzheimer's disease.
- Severe dementia due to Alzheimer's disease.
Here is the link.
https://www.mayoclinic.org/diseases-conditions/alzheimers-disease/in-depth/alzheimers-stages/art-20048448https://www.mayoclinic.org/diseases-conditions/alzheimers-disease/in-depth/alzheimers-stages/art-20048448
Hope this helps.
Mike
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I am so sorry you are in this situation. Here are my suggestions: Contact an Elder Law attorney. Get your legal affairs in order while he can still sign documents. Get HIPPA forms signed. Get the name of an SSDI attorney from your lawyer and have that attorney file the paperwork for you. Purchase TILE gps trackers and put them on wallet, keys phone. Someone will need to take over all of your finances. Make a list of all of your accounts with log in and passwords. This should include your phone and computer. This information should go to the person you designate to have your financial power of attorney. If there is a Mayo Clinic near you, get a referral for the Habit Program. It is an excellent program for patients and their caregivers. In the program, they will train you on Brain HQ, an online brain game program. It will help you with cognitive functioning.
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where do you go to fill out the paperwork for disability. I am currently on ADA from work it is the next step from fmla. It ends 7/4/26 I need to get the paperwork started soon I would think.
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Barry
You can find the disability application below. I haven’t applied for disability yet, but I hear having a Disability Lawer cold help you through the steps.
https://www.ssa.gov/applyfordisability/index.htmHope this helps.
mike0 -
You can actually go to your social security department in your area if you need help with thatthat. I also researched for about three or four months and decided to get an attorney because I can take 7 years for it to be approved if you don't do it right So I hired them on October of last year and by the end of February I had all my back SSI on my back social security disability payments so it was very fast.
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I'm sorry, Jen. It sucks, really. Really. Do you have some supportive people around you? Have you looked into the AlzAssoc Support groups? You still have life to live. Your reality, and mine, is that we don't have the time we thought we did. I try to focus on today, and maybe tomorrow. I'm learning ceramics. I'm going to a wolf sanctuary tomorrow. I'm an advocate for the Alzheimer's Association. Do things you've always wanted to do.
It is humbling. I get it. Try to stand tall. We have nothing to be ashamed of. We have a disease that ends our lives sooner than we want, but... I'm here now.
You know, I don't think they can fire you for Alzheimer's. Not sure, but they have to offer accommodations to help you keep working. But, they do what they do.
I wish I had cancer, too. You are not alone.
XXOOOOO
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Ssdi application is very easy to fill out online. You won't need to hire an attorney. My approval came very fast with no follow-up stuff. Also remember to check with your employer to see if they have you enrolled in a long term disability insurance policy. I was and didn't know or remembered it. That was a life saver financially for me.
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hello. You mentioned taking a genetic test, but have you taken the FDA Approved Lumipulse pTau217 Beta Amyloid 1-42 blood test and brain MRI and EEG as well as complete bloodwork to rule everything else out for your MCI. A Lumbar Spinal Tap or PET Scan are other tests acceptable for confirming Alzheimer’s Disease along with your symptoms. Genetic tests such as the APOE4 is not a confirmation of the disease. I went through 8 years of MCI before my PCP sent me to a Neurologist specializing in dementia disease. I am in Stage 4 of 7 Alzheimer’s boardering with Stage 5, mainly because I have Vascular disease, diabetes, Dermatomyositis, sleep Apnea, and secondary Sjogren’s and had two TIAs since 2024 with embolisms. If you have not seen a Neurologist, I highly recommend that since they are the dementia experts. I am on Donepezil and a mood medication, but still drive, not sure how much longer. I am 72 this year, had first symptoms just before my 64th birthday.
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I did not qualify for the FDA approved infusion medications because I am on blood thinners and had two TIAs with embolisms in two arteries. So I am stuck with Donepezil until it is no longer beneficial, Neurologist said there is one other drug he can add, but the Donepezil is preferred for my situation. I was on IVIG Therapy for Dermatomyositis for 6-1/2 years for 2 consecutive days a month that took 10 hours a day and had to have a steroid and benedryl but in the IV each time because I had life threatening reaction the first time. I am happy the infusions are helping you and others. Best to you and yours
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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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