A dementia mimic

Iris L.

I always encourage new members to have a thorough diagnostic evaluation to search for dementia mimics, before accepting a diagnosis of Alzheimer's Disease.  For years, I have known that I don't have AD. I wondered why I still had significant memory loss, poor executive functioning and apathy.  I have a diagnosis of systemic lupus, antiphospholipid syndrome and hypertension, all of which can contribute to cognitive symptoms.  

But a significant contributor is a condition that is mostly invisible, and that is SLEEP APNEA.  Due to bureauocratic, pandemic-related and other reasons, I had no treatment for sleep apnea for several years.  I have resumed treatment a month ago, and I have noticed improvement in my functioning.  The severe apathy, which I referred to as the "don't want to's", is decreased.  I can get up in the mornings and actually DO tasks and ACCOMPLISH goals.  I feel better.  Not cured, and certainly not normal.  

It may be too late for a great deal of improvement.  But I am satisfied with a little bit of improvement.  Because my life had come virtually to a standstill in these past months.  I was in a deep crisis, close to a catastrophe.  No one knew, and no help was forthcoming.  My only help has been resuming my CPAP treatment for sleep apnea.  Sleep apnea is almost never considered as a dementia mimic.  But I have a neurologist who did have me evaluated for sleep apnea.  I had to follow up myself because his office did not call me with the results of the overnight sleep study at the hospital sleep lab.  Plus, Covid got in the way.  But finally, I am getting treatment! 

Well, this is all.  My recommendation is to check yourself for sleep apnea.  Discuss with your neurologist about obtaining a proper sleep study.  Treatment is available and may bring some degree of improvement.

Iris

Michael Ellenbogen

GGreat news. I may call you in two weeks as I am leaving for a business trip next week. Going to Denver Colorado

Iris L.

Safe travels, Michael!

Iris

zauberflote

Iris, I am very pleased to hear this! Your news brought a smile to my heart!

And Michael, safe travels, and I hope it will be a productive trip with some fun in it too!

SusanB-dil

Oh, Iris - Thank you for posting that!  and SO glad it is helping you.

I've often wondered about DH not using his CPAP, and sometimes just 'weird' issues he has. I contributed it to a statin for a heart issue he had a couple years ago.  his doc told him 'that was a myth'.  I told him, no, it is not.  But now with the sleep apnea on top of it.... hmmm!!!

Iris L.

Thank you, zauberflote.  I hope you are doing well!

Susan, like your doctor, I was surprised by the possible complications of untreated sleep apnea.  I thought sleep apnea was an annoyance, but not a real danger.  But it is!  My MRI shows changes, which have progressed over the two decades that I complained of memory loss.  Are those changes due to lack of oxygen in the brain from sleep apnea or due to something else?  Is my hypertension related to long untreated sleep apnea?  Doctors only recently began looking at sleep apnea as a serious disease.  It is not always accompanied by snoring, especially in women.  So who knows how many undiagnosed and untreated sleep apnea patients there are?

Also, the treatment is problematic.  My first mask was very uncomfortable and I skipped many nights.  My latest mask is comfortable because I can better adjust the fit, and I am using it every night.  Nevertheless, I doubt that a PWD would be able to manipulate the mask enough to get it to be comfortabe and wearable every night.

Statins, like other medications, may cause cognitive side effects.  A person just has to check it out.  Of course, the cardiovascular problem that the statin was prescribed for, also is a cause of vascular dementia.  So there are a multitude of issues to be concerned with and to address.  All the while understanding that true dementia is progressive; one can only hope to possibly slow it down a bit and to keep the PWD comfortable.

Iris

SusanB-dil

Wow - thank you very much - good information to know.

We are caring for his mom.  But... sometimes I see weird issues with DH.  And yes, he also has trouble wearing his mask.  I told him to go back to doc to see what they could do.  Since that was a few years ago, maybe he can get a mask that is more comfortable for him.  I can tell him that I have it on 'good word' that there are more comfortable masks!!  thank you!  

and yes again with the Vascular Dementia - with his mom.  She has Alz and Vasc.  So... we do wonder if it runs in families.  Wonder if he already have issues because of his cholesterol level, hence the statins (and his heart).  Ugghh.  He does pretty well cognitively, but guess time will tell. I agree - that anything we can do to avoid 'this', would be worthwhile.

Iris L.

Susan, I do believe that cardiovascular issues, vascular dementia and Alzheimer's Disease run in families, although it is not always a straight line from a grandparent to parent to child.  We (all of us) have to work on whatever we can do to ameliorate what we can, such as controlling high blood pressure and high cholesterol and so forth.  

I am working with a medical appliance company that helped me with the mask.  Your DH needs to go in to the office or better yet, if possible considering Covid, request a home visit to help him with his mask and compliance.  He can also ask about the use of a dental appliance for the treatment of sleep apnea.  I may look into this myself, because the idea of using a mask and CPAP for the rest of my life is not appealing.  It's not horrendous, because there are worse problems, just not appealing.  

It's very important, and I might even say it is vital, to get good sleep!  There are too many bad results from poor sleep.  Good sleep is underrated by the public and by doctors.  This is a huge, underappreciated issue.

Best wishes to you and your DH and MIL.

Iris

SusanB-dil

Thank you again.  Much appreciated.

Will 'attempt' to get him to listen.  He can be stubborn where docs are concerned.  I know - not unusual...

Agree - good sleep is important.

KawKaw

A most excellent reminder, Iris L.  Thank you.

I know I sometimes reach for easy answers so that I might make sense of my world.

Yet, things are often not as they seem.  So vigilance is good advice.

Iris L.

It's nice to see you again.  How are you doing?

Iris

oehlsena

Oddly enough, before I got the chance to reference this at my caregiving support group yesterday, it was brought up how INSOMNIA can be an Alzheimers mimic. I got to share this with them, also.

dpw52

My DH officially received the diagnosis of AD about a week ago. I have noticed progression in loss of memory, confusion and episodes of not recognizing family members, including me. Based on screening for memory and some executive functioning, the neurologist said he was worried about memory, used the actual words AD and prescribed Memantine.

One year ago, the same neurologist said, based on test batteries (blood work, CT Scan and MRI that DH had "hardening of the arteries". No evidence of "scary diseases" was observed. DH did sustain a significant concussion 6 years ago. Following the neurological workup last year, DH was referred for sleep study and Mild Sleep Apnea was diagnosed. A year later, he had tried extremely hard to comply with nightly goals (at least 4 hours 80% of the time) and has been relatively successful. Initially, DH would sleep much of the day; after C-PAP this behavior decreased. Now, I'm witnessing an increase in daytime napping. I suspect, however, it may be boredom and not fatigue. If I suggest an activity, DH will sleep for an afternoon rest and will get up independently. Nothing planned, he will sleep most of the afternoon. Sometimes, he will even say he is going back to bed before lunch.

DH has been prescribed Gabapentin and that has helped with the restlessness but there are some very strange behaviors exhibited. He seems disoriented at times and appears to be "sleeping" but performs some activities. For example, recently I went to bed before him (usually does not happen) and he probably fell asleep in his chair. I got up to used the restroom and he wasn't in bed. I called out and there was no answer. I went looking for him and found him in our spare bedroom. When I asked why he was in the bedroom, he told me there was a party going on in our bedroom and he was tired and wanted to go to sleep. I told him everyone had gone home and he could come to bed now. The neurologist has recommended a repeat sleep study. The initial sleep study showed movement during REM sleep.

Any suggestions as to next steps would be appreciated. I feel like our lives are spinning out of control. I'm trying desperately to find resources and to benefit from the experience of those who have come before. Just want to make sure the support, care and advocacy are the most appropriate for the situation. Thanks

BadMoonRising

https://alzconnected.org/discussion/comment/177311#Comment_177311

I'd get a second opinion. This just sounds "off" to me. Are you within driving distance of a university based Memory Clinic? My parent had sleep apnea and was eventually diagnosed with Alzheimer's Disease. The AD diagnosis was based on cerebral atrophy and cognitive testing. However, she also acted out when asleep and had several falls down a flight of stairs, resulting in several trips to the hospital. We had her seen by a specialist. Once she was diagnosed with REM Sleep disorder (in addition to AD), she was prescribed Klonopin, a drug that is normally off limits to patients with dementia, and the "acting out" during sleep stopped. In your husband's case, it may be as simple as the Gabapentin screwing up his sleep, or a REM sleep disorder that needs to be treated. He could also have a different type of dementia. IMHO, he needs to be seen by an expert, preferably at a university based Memory Clinic. Best of luck.

dpw52

Thank you for your insight. I am waiting to hear back from sleep doc. My DH has a follow up appointment in August. The combined knowledge of the members of this group has been informative and insightful. Unfortunately, I live in a generally rural state with a large aging population - Maine the oldest state in the union.

My DH is a patient of the largest neurology practice associated with the state's only teaching hospital. I will explore options out of state (Boston, and Dartmouth-Hitchcock.

Thanks.

jeanchaney

Very interesting. Thanks for posting this.

Iris L.

Welcome, Jean! Can you tell us more about yourself? Have you been given a diagnosis?

Iris

DrMichaelSG

Hello Iris,

Wanted to weigh in on the Sleep Apnea issue. I am incredulous relative to the relationship between sleep apnea, hypertension, and dementia. I've always considered Sleep Medicine to be a fuzzy science, but I have recently learned that nothing could be further from the truth. I now have the very same questions and observations that you do....in 2011, I had a sleep study following which I was prescribed a CPAP machine, which I used for 2 weeks or less, and the returned (this technology has come a long way in a decade -- the old machines were very loud, akin to one's being seated in a fighter jet -- and this is true both in terms of the loud noise as well as the feeling of confinement). Today's machines are nowhere as uncomfortable....the loud sounds are now gone, the machines are small, they are able to electronically send info directly to your doctor (that oversight feels just a bit intrusive; we are now living in the age of the Jetsons....what would we have thought of the technologies we now have had we had them just a mere 10 years ago?). But I also wonder about the extent of the self-inflicted damage that not following through may have caused over the past 12 years. What I do know is that I've gone from mild to moderate (i.e., borderline severe) apnea, despite being a vehement exerciser (long-distance runner and weightlifter) and healthy eater. Yet, I have ALS -- and now some form of dementia.

Back to sleep medicine, barring surgery (or wearing other appliances?), one cannot get around the nuisance of wearing a mask. The constant shifts in pressure in today's CPAPs are by no means unbearable, but they ARE still somewhat unpleasant (others may not perceive things this way, and so by all means, please do not let my observations deter you -- it seems to me that if you can snorkle, you can likely handle a CPAP machine as well). I've never been an anxious person, but wearing a mask (even half-mask) that covers the nose and mouth is -- for me -- terribly confining and anxiety provoking. But everyone is different, and if CPAP has been recommended, the process should be tried, because what we know of this science is real -- I recently found myself comparing my 2011 and 2023 sleep study numbers with those of a research study performed with LBD patients who have mild to moderate dementia; I found that my numbers are generally worse than those in that study. I was very surprised by this -- coupled by your observations, Iris, that your use of CPAP has actually helped to improve your symptoms, and so I tried to use my CPAP last night. But....I admittedly had trouble doing it (my ENGLISH bulldog made it clear that she detests the look of it as well). Even so, CPAP is (insofar as we know anyway) CRITICAL to the quuality of one's future health. How much, we don’t really know. For this reason, I am going to continue to try and work my way though this, albeit the damage is likely already done in my case. Lesson learned: We don't know what we don't know (to wit, the ongoing controversy that the extended use of Proton Pump Inhibitors are causal of dementias is being bantered about again).

Come to think of it, our "science" is truly a moving target. Inasmuch as we want to believe otherwise, the science we know today is not static; science is not "truth" -- and it may not be the science of tomorrow. And that’s why we continue to explore, to research things we've already researched many times before. For instance, we now understand the universe to be expanding faster than the speed of light -- today, we know that we don't live in the perfectly balanced "clockwork" universe once thought. And as brilliant as he was, Einstein was wrong --he was wrong about a few things. On balance, we should approach all things with an honest and measured mix of skepticism and open-mindedness, but always with the assurance that our Creator (who made all of this) has all of this under control. For now, it's the very best that rational people can do. :)

Iris L.

Mike, I don't know anything about the "clockwork" universe. But I agree, our Creator has all of this under control.

I'm still trying to get back to using my CPAP.

Iris

Mimi50

My husband has had sleep apnea for years. His machine is broke so I will make sure he gets new one. It might help little with some cognitive issues. I can't believe the amount tests and problems the doctors never addressed. Thank you for sharing this information Iris.