Young Onset Alzheimer's

rtlucas3

My wife just turned 55 and was officially diagnosed with alzheimer's at 53. I am 59 and had to retire at 56 to take care of her. I have done a lot of reading on the disease and caregiver stories on caring for people with alzheimer's. I often tell people if they really want to know about dementia they should read the testimonials of caregivers especially those that spend 24/7 with the person.

I won't bore you with the long stressful road we have traveled medically, emotionally and financially to get to where we now are because I'm sure we have all experienced similar things.

I was told that my DW has Alzheimer's with psychosis. Her MMSE score is 12 and is taking 4 different medications which have been increased accordingly to help control her "episodes". I have read a lot on the usual symptoms of the disease but can't seem to find anything on what we are living with. She has hallucinations, dillusions, anger and very fearful people are mean to her taking things and are constantly trying to get in our house. Things are progressing and our next neurologist appointment is in two weeks, which I'm sure the meds will be modified again.

She is much too young for this and so am I. This is brutal to say the least.

Any thoughts?

terei

There have been many posts here that have described same behaviors you are describing….paranoia, hallucinations, delusions, sometimes even physical aggression. Try to take some time to read the posts here. It sounds like you have medical support that at least is trying different meds to help you + your wife. Some here are searching for medical professionals who have a clue about how AZ can manifest + ways to treat with meds

M1

Welcome to the forum. It's a very rough road. I hope further medication adjustments help. This forum can help support you in other ways, i hope it helps you cope.

Dio

https://alzconnected.org/discussion/68951/young-onset-alzheimers

Sorry that you have to be here…and you two are so young, too. My heart aches for you. I'm no doctor, but your wife's symptoms seem to fall under Lewy Body Dementia (LBD) which is quite different from Alzheimer's Disease. You said you already went through a long journey to arrive at this diagnosis, so I won't ask you to rehash that. Just ask more questions of the neurologist. LBD is often misdiagnosed and quite difficult to diagnose because it can only be confirmed postmortem. Typcially it's diagnosed based on behavior symptoms and elimination of other possible causes. Our neurologist still cites "probable Lewy Body Dementia" on all official records. My DH was diagnosed with severe depressive psychosis early on. I don't know how it might have changed our course if he had been diagnosed with LBD sooner. In any case, having a more accurate diagnosis may help you prepare for her care and proper medications. Wishing you well. This is the right discussion forum to be in.

Iris L.

Dio has a good point. The medications for Alzheimer's Disease can make Lewy Body Dementia worse. You might also consider consulting a geriatric psychiatrist to prescribe medications for hallucinations and delusions, they are specialists.

Iris

rtlucas3

You are spot on.

She was originally diagnosed with schizophrenia, which is a common misdiagnosis. When we finally were able to be seen by a neurologist LBD was probable. Her symptoms and MRI were all indicators. Then she was scheduled for a Lumbar Puncture which confirmed alzheimer's. The neurologist has told me my wife is in the one percentile of this form of alzheimer's. Alzheimer's with Psychosis. Her memory isn't the main issue, it's not good but the intense and constant dillusions and hallucinations are her main symptoms and my concerns. If the worst is yet to come........I have a very rough road ahead!

Thank you for your comment

Dio

Hold onto your hat then. You've come to the right place for boundless info and support. We are here to help you along on your rough journey. My DH participated in an Alzheimer's Research and one of the scans ruled out Alzheimer's for him. Normally, the research test results wouldn't be available outside of the research but his neurologist was the research director. So we were able to get to the much needed info.

rtlucas3

Iris

She was seen by a psychiatrist and perscribed meds for the hallucinations and I won't even tell you what horrible affect they had on her. You are absolutely right the wrong meds make things worse. The neurologist has been very selective and cautious of the type of meds and how much to give.

Thanks

MarDel0917

Hi, this disease sucks. My bf is 44 and I am 38. He was diagnosed with AD last October. He recently in the last 2 to 3 weeks (especially the last week and a half) sees his reflection as "him". I think "he" is his younger self. I never realized that your reflection is EVERYWHERE not just mirrors. We have an appointment with his pcp to see if he can diagnise something for him. His neurologist said it's not the donepazil tho I have read that med can cause hallucinations. I wish you luck.

We are all in this together 💜

DTSbuddy

My DO was diagnosed with PPA. three years ago, and can speak only occasional intelligible phrases and the rest of the time it is word salad. In the last couple months he has started episodes of ranting, with his arms flailing, sometimes with his face up close to mine, and angry expressions. If I can stay calm, and not run or talk back, they last only an hour or two, and then he's back to his sweet self. I'm wondering if he is hallucinating that I am someone else. What do you do, RTLucas3, and what do others recommend caregivers do, during these periods of anger? He is not taking any meds. A couple times, I have reduced the intensity by singing a gentle song, or expressing sympathy.

rtlucas3

I have questioned a couple times , is it the meds causing hallucinations. I then stop myself and look back at how she was before the neurologist put her on the right meds and then come to grips it's the progression of the illness.

When she is having an "episode" I stay calm and try to distract from her false beliefs at the time and tell her I have told the people to leave our house, to hide the items she believes the people are trying to take from her and just ride it out. Usually last about an hour, then she is exhausted and will take a nap. I have become a very good lier.

I used to look at her and think things are normal in her eyes, I now realize she has no idea and can't really process reality as we know it.

I also stay on a very structured routine with daily living, and more importantly the medication schedule.