Early onset, no family history

Gopher

Hi everyone, apologies in advance for the lengthy post.

My DW was diagnosed with MCI at stopped working at 48, and diagnosed with EOAD shortly thereafter. No family history of AD or other dementia disorders. She just turned 53 (I’m 55) and for ~4 years had been relatively happy, competent, and independent, though increasing difficulties with phone and technology, short-term memory, confusion, etc and not driving over past ~2 years. She is in otherwise good physical condition. We still try to walk 1-2x per day, and get to the pool 1-2x per week mostly to relax and move. She has been and continues to be in denial or unable to comprehend her AD diagnosis - this was initially a blessing as she did not stress her diagnosis and fate, though more problematic recently as she is completely resistant and distrusting of any medications, doc visits, etc.

2 months ago DW awoke crying out and having vivid hallucinations, and has been having what I consider substantial delusions and hallucinations (visual, auditory) every day since - she now in a world of hallucinations essentially 100% of waking hours. During this time she started running from our home at every opportunity. This lasted for a stressful month, but has subsided and she is now content to stay home though we’ve since put measures in place to minimize this risk (change door locks, security cameras). She is constantly surrounded by imagined people who trick and torment her, “steal” things, cause her physical pain, etc. She displays paranoia and unplugs electronics, removes picture frames from walls, collects random things in our bedroom and continuously organizes and reorganizes these things, and other unusual behaviors. Verbally she is struggling for words and increasingly transitions into gibberish. She often starts a sentence in words that ends as counting numbers. When I try to comfort, distract, and refocus, she drags me into the drama with accusations of being “one of them”, lying, cheating, stealing, harming, etc. She often believes me to be an imposter. She has begun having difficulties with ADLs, and can take hours just to get dressed or ready for bed.

After visits to PCP, neurologist, and even emergency department in past 2-3 months and ruling out other exacerbations (infection, stroke, blood labs imbalance), she started on seroquel/quetiapine (increased to 50mg 2x daily, ground and hidden in food) which provided some initial help with sleeping but recently little if any relief of delusions/hallucinations. On a good night we get 5-6 hours of sleep, and the seroquel seems to be less effective.

Over the past 2 weeks her hallucinations have become much more troubling to her, and her agitation and anger has increased substantially - yelling, loud demands/threats, throwing things, etc. It seems there are noticeable changes to her status weekly. If I had to guess a stage of illness, I would guess late 4 to 5, but open to more experienced input.

About me: Thankfully, I am also relatively good physical health, have been trying to learn and prepare over the past few years. I work a fairly demanding full time job and for the past 2.5 months have been “working” from home while trying to manage care of DW and household. We have a mortgage, and 2 young adult children living at home and trying to start their careers and lives. We are in decent financial shape, but depending on duration, MC may wipe us out. I have visited a few MC facilities to begin to gather information and narrow down future options, but come away discouraged as DW would be miserable surrounded by strangers of a very different demographic (by 30+ years in most cases). I also have concerns about their ability to handle her periods of agitation/confusion/aggression with levels of staffing provided.

I guess my questions for you all at this point:

1. Anyone out there with a similar experience with sporadic, EOAD and willing to relate or point me toward their history? I’m struggling to find other EOAD with no family history and similar symptoms.

2. Is our recent experience (past 2-3 months) with rapid decline to be expected? And what might this tell us about future course of illness and expected duration?

3. Any thoughts on medications that may help alleviate the hallucinations and associated distress/agitation? Is her 2x50mg seroquel dose typical, can it be safely/effectively increased? Any other meds that may work better or in combination?

4. How do we go about financial+care planning without an idea of expected course of illness and duration of care needed?

5. Any other ideas that may help my DW and lessen our family’s pain?

With sincere thanks.

Edits: additional info to answer some of the questions.

• EAOD diagnosis after extensive testing from Neurologist and Memory Center at major academic medical center in US.  Includes physical tests, extensive memory testing, imaging, and the final piece was CSF biomarker tests for amyloid B42/40 and Tau proteins. Fairly confident in this diagnosis, though it does not preclude some involvement of LBD.  Having lost my father from LBD, I am familiar with some of the symptoms and I do see some overlap as well. 
• No known head injuries in past
• Checked multiple times for UTI in past few months - negative.
• Applied for and eventually approved for SSDI and Medicare.
• Thanks to several good comments, I’ve contacted a CELA attorney, filling out survey info, and will try to schedule a meeting soon.

Ed1937

Hi Gopher. Welcome to the forum. Sorry you need to be here. I don't have many answers for you, but it sounds as if you haven't seen a CELA (certified elder law attorney) yet. If that's true, that should be a top priority for you. A  CELA can protect many assets for you, and that's something you really need to do ASAP. This is super important for you. Others will address your other questions.

dayn2nite2

So, EOAD is the diagnosis you were given by a doctor?  What specialty was the doctor?

Has Lewy body dementia ever been mentioned?  Because honestly, the hallucination portion sounds much like that.  And if that's what she has, the medications for Alzheimer's-related dementia might not work.  Could be FTD also.  Has she ever had a head injury in her past?

If she hasn't been already, I would take her to a memory clinic affiliated with a medical school closest to you to pinpoint exactly what she may be suffering from.

Family history really doesn't matter - my mother started having symptoms in her late 50s (absolutely no family history) and finally diagnosed in her early 60s, but I feel she honestly had Alzheimer's, she never had hallucinations or delusions as you describe.  She just progressively lost her ability to process information and take care of her ADLs.

Ed1937

dayn2nite2 wrote:

Has Lewy body dementia ever been mentioned?  Because honestly, the hallucination portion sounds much like that.  And if that's what she has, the medications for Alzheimer's-related dementia might not work.  

That crossed my mind too. We have a member, Jjaz, who lost her husband to Lewy Bodies. If I'm not mistaken she said the same thing. The medications used for Alz might also make things worse if Lewy Bodies is the culprit. Jjaz doesn't visit here too much anymore. She is involved with  Lewy Bodies dementia program. It would be worth it to have Lewy Bodies ruled out.

Kenzie56

This sounds just like my MIL. She had Lewy Body Dementia.  Her hallucination were so bad - especially in the evening and all night.  She named all the people who "lived with her".  Most of the people were children but some were scary men out to get her. She also saw animals walking around the room. What worked for her (I know everyone is different) was Seroquel and Depakote together.  She also became very combative - trying to hit people with her cane.  Once she was on both medications, the people left "without saying goodbye", and the combativeness slowly got under control.  You may want to ask the neurologist if this could be the case with your DW.  Also, with LBD, Benzodiazepines can make the symptoms worse.  In my MIL case, she was put on Alprazolam (Xanax) by the MCF nurse practitioner.  This sent her spiraling into delirium which sent her to the ER, where she was admitted in order to adjust her meds by the geriatric psychiatrist. He is the one that weaned her off Xanax and put her on Seroquel and Depakote. I hope this helps - and good luck to you.  Btw - we took her to several neurologists before we found one that worked for her.  2nd and 3rd opinions are needed sometimes.  Sadly, I found not all neurologists are all that knowledgeable in the challenging field of dementia. (Just my opinion.)

jfkoc

My husbands final diagnosis was LBD. You will want ot look into this. There is much online plus https://www.lbda.org/ . Please read everything on this site. It is not AD and is treated differently. Additionally the organization is very helpful over the phone.

Crushed

The pattern you describe is not unlike my wife's who was also early onset.  she was an aggressive wanderer and clearly psychotic .  She is unquestionably Alzheimer's. 

I tell people to see financial and legal advisors the moment you get a dementia or MCI diagnosis of any kind You can lose social  security disability by delay 

5 years is a critical time limit do not delay if she is not already on SS disability One day late and you lose everything  

zauberflote

You mention she was checked for infection-- did this include a culture for UTI? These can sneak up on a PWD, and have no normal symptoms,  but sudden behavioral changes are common indicators. However, I definitely defer to the LBD community here!

elainechem

I agree with the other who said this sounds more like LBD because of the hallucinations. My husband had EOAD. He became symptomatic at age 57. He died in 2020 at the age of 65. He had a family history of elder onset AD. His father had AD at the same time as his son. Dad died at age 94. I think that very few people have familial EOAD. Most of the time it's random.

My hubby also had aphasia which started becoming noticeable about two years into his illness. My husband was approved for hospice based solely on his aphasia. The criteria was 6 or fewer intelligible words during the intake interview. He spoke quite a few more words than that, but they made no sense.

Since her symptoms changed for the worse rather suddenly, she needs to be checked for a UTI or other infection. 

My husband had delusions. He was on a low dose of Zyprexa which helped some. I think that antipsychotics may make LBD worse, so you need to be sure. 

You do need to see an elder care attorney ASAP to get things in order. 

And, if I had to stage your DW, I'd put her solidly in stage 6. I'm so sorry that you both have to go through this. 

MN Chickadee

You need to see an elder law attorney ASAP. They can look at your particular situation and advise the best way to plan for care. Each of our situations is different and laws vary by state as well, and you want solid legal advice. There are some things that can be done to protect the rest of the family financially. Even not knowing how long she has, an attorney will know the best way forward for finances. They can also make sure other legal matters are all in good order such as power of attorney, wills, etc. 

Are you are certain it is EOAD? Did she have a proper diagnosis process with a neurologist including a lengthy neuro-psych session and a MRI, CT, and/or PET scan?  If so and they are sure it is Alz then I would consider getting her to a geriatric psychiatrist. They are best trained to tinker with meds for extreme behaviors. It can take some trial and error with doses. There is no one size fits all and everyone reacts differently to drugs. But a geri-psych is the best person for extreme behaviors. If that isn't possible then a neurologist or some type of physician who specializes in dementia, not a primary care doc. 

However if the diagnosis was not according to best practices I would go down that road first. It's very important which type of dementia it is when prescribing meds. Some folks need to go to an inpatient setting to get stable. There are specific units called geriatric psych or senior behavioral health. There a person usually stays (involuntarily) a few weeks to find the right meds and get stable. It is staffed by doctors and nurses who specialize in dementia behaviors. The closest one to me is 2 hours away but for the people I know locally who have needed the services it has been worth every bit of logistical challenge. If you ever feel you or your kids are in danger call 911. Then EMS would take her to the ER for a pych hold and from there you would have her transferred to the geriatric psych unit for the aforementioned treatment. 

My mother had EOAD. It was nothing like what you describe but everyone's journey is different. No two PWD are the same. It started to set in when she was about 55 but apart from repeating stories now and then it wasn't noticeable for the better part of a decade. Around 63 she started having the typical progression but wasn't aggressive and didn't have nearly this degree of delusions. She lived a total of nearly 20 years with the disease; it sounds like your wife is progressing at lightening speed comparatively.  

You are in crisis mode. Even if you hit your limits and can't care for her at home no facility will take her in her current state. The suggestions I have for coordinating care, day programs, getting sleep, communication techniques, family dynamics etc. are all going to be useless until you get her aggression under control. If you can get moving on that piece other things may get easier to solve. Please do let us know how things go; these are caring people here and there is a wealth of information and support. 

RIM

This is a video from Univ of Michigan, Lewy Body Dementia.  It describes symptoms, along with treatment options to alleviate the the symptoms. 

https://youtu.be/wCJPv0eXeQk

Gopher

Yes, 3 urine cultures negative across 6 weeks.

storycrafter

Psychiatrist who initially handled dh's medication said 300 mg Seroquel was a therapeutic dose. It's possible the Seroquel benefits seem to decline for your wife because they're not at therapeutic levels for her situation. Seroquel needs to be increased very slowly because it causes drowsiness at first. The drowsiness passes after a couple weeks.

JJAz

Hi Ed1937, thanks for the shout out.  And thanks to you and others for mentioning Lewy as a potential culprit to be checked out.  Many thanks to all of you who are active here and helping others who are on this journey.  I still check in occasionally, but spend most of my assisting with the forum for Lewy Body Dementia spouses.  Sending many blessings to all of you.

  https://groups.io/g/LBDCaringSpouses

David J

Welcome, Gopher. My wife has dx of early onset Alzheimer’s Disease. She had really bad delusions several years ago, and Seriquel helped greatly. She is still on 300 mg at night, with another 100 prn if she doesn’t fall asleep. 

She is also on Depakote after she developed seizures, which also helps her anxiety and slows her down. She used to elope from the house before she went to the MCF. At the MCF, she used to walk at a high rate of speed and sometimes break into a run. The Depakote slowed her down to a normal pace, and allowed her to stop and rest or sleep, instead of anxiously walking. She still walks most of the day, and tries all the doors, but is less anxious and more manageable. 

Gopher

Thanks everyone for the warm welcome, encouragement, and thoughtful comments and suggestions. I’ll try to answer several excellent questions here, and updated the original post to add this info.

• EAOD diagnosis was made after extensive testing from Neurologist and referral to  Memory Clinic at major academic medical center in US for additional testing.  Includes physical tests, extensive memory testing, imaging, and the final piece was CSF biomarker tests for amyloid B42/40 and Tau proteins. We’re fairly confident in this AD diagnosis, though as I understand it, this does not preclude some involvement of LBD.  Having lost my father from LBD, I am familiar with some of the symptoms and I do see some parallels as well. 
• No known head injuries in past
• Checked multiple times for UTI in past few months since worsening - all negative.
• Applied for and eventually approved for SSDI and Medicare.
• Thanks to several good comments, I’ve contacted a CELA attorney, am filling out survey info, and will try to schedule a consultation soon.
• I’ve put in a request to her neurologist for referral to a geriatric psychiatrist to help find the right medication options. Hopefully it does not take months to schedule.

Sorry for the slow responses - I’m sure you understand.

Gopher

Thanks, this is helpful. Agree we have not reached a therapeutic dose of seroquel. I’m trying to get a referral to geriatric psych to help with finding the right meds and dose.

Gopher

Thank you. We applied for and eventually received approval for SSDI and Medicare coverage, and I’ve now contacted an elder care attorney to help advise other financial and planning aspects.

MN Chickadee

That's great Gopher, it sounds like you are doing everything right and being very proactive. I hope you are able to find a physician quickly to help find the right meds for her. It must be very difficult for her to live in that horrible head space day in and day out.

Once she is more stable, you might want to look into adult daycare if that is an option in your area. They are usually designed to allow caregivers to work and are open normal business hours. Many are set up to handle the medical aspects of dementia needs like toileting, administering meds, etc.  We called it "volunteering at the senior center" and eventually my mother came to think she worked there. A day program might provide a temporary solution so you can work and not have to move her to a facility while she still has awareness. 

However it could be that eventually you will have to move her if her needs go beyond what you can handle at home. You might want to reach out to your local chapter of the Alz Assoc. They may have some ideas on facilities that would be better for a younger person so you could get on the wait list just in case. You might also want to start another thread here specific to the topic of selecting a memory care facility for a young/EO person, you will get responses from folks who have been through it. My mother's facility had a EO resident when we started there, he looked to be in his mid 50s. While he did stick out a bit it seemed to work. At a certain point their brains don't process and they don't ask questions like we would. I would also add that my mother seemed to think she was a young person, I think she was living in the 1960s much of the time. So even though she was an "old person" when we moved her to memory care she didn't think she belonged with the other residents. There are always challenges with any PWD, but a good facility with well trained staff will be able to make it work. At the end of the day you have to do whatever her care needs require. None of it is easy but it sounds like you have a good grasp of the situation and are capable of doing what needs to be done.