Dementia & Memory Problems

[Johnb69]

Hello Everyone,

I have had OSA for 15 years now. I use a pap and I’m very happy with it. My wife has had some major health problems. Specifically her memory started failing about 7 months ago. Then the dementia started approximately 5 months ago and continues to get worse.

The start of all her problems were seizures. Very bad ones resembling epileptic seizures. In fact they initially diagnosed her with epilepsy.

We sought out medical help for her. She has seen several specialists including different types of neurologists along with memory docs. Testing has included CAT scans, MRIs, a PET scan, a lumbar puncture and most recently a sleep study.

They have diagnosed her with OSA and extreme anxiety. I have known quite a few people to have OSA and have never heard of anyone’s OSA problems causing dementia. If you have never been exposed to it, dementia is absolutely terrifying. My questions mainly are have any of you ever heard of OSA causing dementia and or memory problems. Or have any of you experienced this yourself or one of your loved ones who might have been effected.

The doctor who diagnosed her today is a very highly respected neurologist who specializes in dementia and memory patients. He is convinced her sleep problems and stress are the cause of these problems.

I’m just terrified and her boys are equally frightened for their momma. I just got this news this afternoon. I am digesting it all now. I believe I can get behind this but I want to be certain there are no physical issues before we go hard into the mental health side.

I must be honest I’m struggling to understand how OSA can be the cause of her dementia or memory problems. Or possibly it’s the OSA along with the anxiety that is tag teaming her to create such horrible problems for her.

This has become a very desperate situation for myself and my family. So any information anyone can share with me would be greatly appreciated. I have been coming to this forum for years seeking answers to sleep related problems. This is by far my most important search, I’m just concerned for my wife plus I can’t even begin to imagine how scary all this is for her.

Hope you folks can help me. Thanks a bunch.

Feel free to call me if it’s too private a topic for a public
forum. I can be reached any hour at 513-673-6987

D. John Bishop

[Julie]

If your neurologist says dementia (Alzheimer's ?) is causing or IS caused by apnea, get another neurologist. The latest thinking is that they may go together, but not that one is necessarily causative of the other, though of course can aggravate the other. Also, is she on meds now for e.g. the seizures? The 'dementia', anything?

Have you seen a sleep specialist (neurologist, pulmonologist, etc)?

Why did she have an LP?

Do you have help at home?

From the sound of it, I can't see you trying to manage her apnea, let alone dementia, on your own at home and need more help possibly (first) from e.g. the hospital social worker or family MD to sort out what's what and where to go now.

[SleepGeek]

I must be honest I’m struggling to understand how OSA can be the cause of her dementia or memory problems.

When you deprive any body part or organ of O2 long enuff you will have failure even sudden cardiac events. Think back how long this untreated apnea has been going on - 30-40yrs? There prob have been other signs of memory loss over that period.

Low or lack of O2 affects us in many ways and when left untreated becomes our new normal.

Keep an eye on her O2 also - she may need to supplement but if she is not breathing it in then it is futile.

[Johnb69]

Julia,

Thanks for your response. We are not trying to regulate her apnea we are waiting to see a sleep doctor. The lumbar Puncture was to illuminate Alzheimer’s. Which came back negative.

Ian struggling to manage the dementia it’s very difficult. There really is no one running point now. As soon as they ruled out frontal lobe, Parkensens and Alzheimer’s the Nerologist moved her along to a Neuro psychiatrist to try the anxiety approach. That’s where we are at now waiting to see Neuro psychiatrist and sleep doctor.

There are really not a lot of doctors out there dealing with this stuff. It’s all very scary stuff. She has no sense of time she can easily move between now and memories from 25 years ago.

[Lucyhere]

Hi John... very sorry for what you are dealing with. I know it's scary. The first hint my brother-in-law had Dementia was such a severe seizure that it landed him in the hospital.

Also, my three closest childhood friends have Dementia/Alz, all in various stages. It's very, very difficult both for the patient and the caregiver.

I'll leave the medical aspects up to the more knowledgeable people here, but may I suggest that you look for Dementia/Alz group(s) in your area. They were an enormous help to my sister and suggested all kinds of things that she wouldn't have thought about. She had people she could call night and day for support.

This isn't easy and I wish you and her the best.

[Julie]

Curious how an LP can R/0 Alzheimer's - never heard of that one when working (not an MD) in Montreal Neuro. Inst. years ago and have since still only heard of difficulties pinpointing any particular physical markers except for plaque tangles on autopsy.

BTW = really bad idea to put phone # 'out there' except poss. in a PM after discussion with particular 'friends'.

[Pugsy]

Curious how an LP can R/0 Alzheimer's - never heard of that one when working (not an MD) in Montreal Neuro. Inst. years ago and have since still only heard of difficulties pinpointing any particular physical markers except for plaque tangles on autopsy.

BTW = really bad idea to put phone # 'out there' except poss. in a PM after discussion with particular 'friends'.

Apparently something that is done now.

https://www.alzheimers.org.uk/research/ ... r-puncture

A lumbar puncture is used to take a sample of the cerebrospinal fluid from the lower back. This fluid flows around the spinal cord and the brain, and clears waste products. Levels of certain proteins in the cerebrospinal fluid reflect what is happening in the brain.

Alzheimer’s disease is characterised by the abnormal clumps of proteins called amyloid and tau in the brain. These changes are reflected in the levels of proteins in the cerebrospinal fluid, so a lumbar puncture can indicate whether the brain is affected by Alzheimer’s disease.

[Julie]

Great - never heard that before!

[Pugsy]

Great - never heard that before!

We are getting old. I am finding that a lot of stuff we didn't know about back when I worked in the field is totally different today. I hadn't heard of it either so I did a bit of research and found out they do it commonly now.

I am having a problem with a little bone in my wrist next to my thumb...back when I worked in orthopedics the fix was to take the little bone out and implant either donor bone or synthetic bone. So when I saw the bone doctor about my problem and we discussed options he just offered removing of that bone and didn't offer the implant. I asked why he didn't offer the implant and he told me that it was because they found out that the implants more often caused more problems and they ended up removing way too many of them so they just don't do that any more. Times change.

[Miss Emerita]

John, this must be so hard for you, your wife, and your whole family. It sounds as though your wife has gotten some good testing to rule out various diagnoses, though perhaps not yet any test that points to a specific disease process.

Mild memory problems are probably quite common with untreated sleep apnea. Disrupted sleep doesn't allow for the memory consolidation that normal sleep produces.

There is some evidence suggesting complex relationships between sleep apnea and dementia. This article focuses on Alzheimer's -- not your wife's diagnosis, I know -- and might be of interest to you.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6542637/

Here is another study to ponder, though the number of patients in the study was quite small:

https://aasm.org/brain-damage-caused-by ... eversible/

I am not sure what led the neurologist to suspect anxiety as part of the diagnostic picture, but here is some information that might be related:

https://www.alzheimers.org.uk/about-dem ... y-dementia

It can be hard to interact with a lot of specialists, especially when the medical problem is overwhelming. When you've had a chance to absorb what you've learned, I'd encourage you to make an phone appointment with the new neurologist -- ideally with your wife's internist also sitting in -- to talk over your questions. I have found it very helpful to write my questions down ahead of time and to have a family member or friend with me for the conversation. The other person can help make sure the questions are getting covered and can help by taking notes on what the doctor says.

Do also find out what support services might be available to you at home, as others have suggested. The right help at the right time can really be a godsend.

[Okie bipap]

I am so sorry to hear about your wife's diagnosis. As others have said, seek outside help. I lost my sister-in-law to alzheimers, and her husband died six months later He was so busy taking care of her that he let his own health needs go. He would not seek any outside help and insisted on doing everything his self. He insisted he was able to care for her, which he was, but it extracted a heavy toll on him.

[Deborah K.]

John,

I'm so sorry that you, your wife, and your family are going through this. I know how very difficult it is. My mother died almost three years ago from dementia. Her doctor diagnosed her as having either Alzheimer's or Vascular Dementia. The doctor said they showed up and acted pretty much the same. Mum had a long history of severe seizures that were not epilepsy. She always had them while asleep at night, and after each one she lost a certain amount of recent memory, sometimes several months, which she never recovered. She was treated with drugs that controlled it for many years, and eventually they lowered the dose and eventually took her off of them as she didn't need them any more.

When she developed dementia, the doctor said the damage from the seizures could well have caused her illness. I don't know if your wife had enough or the right kind of seizures to cause the damage to her brain that my mother sustained, but I just thought I'd mention Vascular Dementia as a possible cause. I don't think many people know about it.

Mum did not have apnea, so I have no idea how they may be connected. Again, I'm so sorry for what you are going through. I know how painful and frightening it is. I'll be praying for all of you, especially for you and your dear wife.

Deborah

[colomom]

I don’t have personal experience with OSA and dementia, but I can testify to the fact that untreated OSA can certainly impact memory and cognition. When my son was in high school he had significant cognitive decline, he went from an honor roll student to failing all his classes. Because of my son’s significant cognitive decline we had to pull him out of school and homeschool him for awhile. A neurologist was the first doc that suspected that my son had sleep apnea. Because I was home schooling my son I was able to see how much treating his OSA improved his memory and cognition, the cognitive improvement for him after treating his OSA was astonishing.
Treating my son’s OSA was an incredibly important piece of the puzzle, but for him it was only one piece. My son is what the docs like to call “medically complex”, your wife also sounds like a difficult case. It took years and seeing many different specialists, but thankfully they finally figured my son’s multiple issues out.

My advice to you is definitely treat your wife’s SA. Untreated SA certainly could be at minimum a contributing factor to her memory issues. While you peruse treatment for her SA keep pushing the docs to look into other possibilities. While anxiety is certainly a real and prevalent issue for many, it has been my experience that many docs fall back on psychological diagnosis’s when they can’t explain what’s going on, so if I were you I would keep pushing the docs to look deeper.
As someone who has both epilepsy and sleep apnea in my family, I’m surprised epilepsy wasn’t top of the list of issues your wife’s docs are concerned may be contributing to her dementia.
Keep pushing, hopefully they will figure out the issue(s).

Being a caregiver is rough. It sounds like you take great care of your kids and spouse, don’t forget to take care of yourself!

[SleepGeek]

When my son was in high school he had significant cognitive decline, he went from an honor roll student to failing all his classes.

Worth noting this is extremely young.

John doesn't say how old his wife is but let's say 40s? 50s? or 60+?

I know my OSA went untreated (before I was dx'd) over 30+ yrs. even tho I remember complaining to the docs back in the 80s about excessive daytime sleepiness. Granted back then OSA treatment was in it's infancy.

I guess it comes down to just how long you can deprive your body of O2 and the nutrients it needs to grow. Our bodies do tend to adjust and adapt then we think we are just getting old.

iirc - 6 minutes w/o O2 and that could be the end of the road.

[Johnb69]

Thanks for the great information. My wife is 53 years old. Her memory problems just don’t compare to the dementia. I am completely unprepared to deal with any of this as I never expected any of it at my age, 53 also. So I am having to learn on the fly.

I really struggle to explain the dementia, one example is time. This is an issue for my wife. She apparently has lost some aspect of time. She can be speaking to me about a current subject then blend into something that happened 30 years ago yet she speaks of it in the present tense. It’s amazing to witness this beiyou can tell that from her perspective she believes the 30 year old bits to be current time that is the present.

I am going to start pushing for some different opinions and or ideas. I definitely agree with the idea of today’s doctors have a certain program the run patients through. When they don’t get a hit on one of their tests they are eager to send you on down the road and or fall back on the the anxiety mental health side. Which you can literally blame anything on. I’m not saying I don’t believe it may have something to do with it I’m just currently not convinced as I can’t find enough solid evidence to support that diagnosis just yet.

The body is so incredibly complex her problems could be the result of many conditions. I am going to have to seek out some help for my mental health in the form of counseling and or support groups. This situation is wearing me out. It just breaks my heart to see my two adult boys 22 & 25 have to see their momma deteriorate like this. I don’t think they are old enough to have the life skills to cope with an event like this. It’s very hard on them.