Hello everyone. My husband has early dementia and is still going into his work setting. How long does this stage last?
Some days he comes home at 2:30 just exhausted. Good things he's the boss! Then will sleep for two hours!
The question I have is:
Has anyone else seen this in early dementia? He has a lot of word mix ups. Word finding problems. Has Sentence and fluency problems but is not at all confused or cognitively affected. He is fully oriented to time and place. Only his speech is mixed up. It's difficult to follow his thought. Sometimes needing multiple questions to clarify.
He has no problems remembering our family names or naming items.
He does have increasing short term memory issues. Losing his phone, Wallet, etc.
How long have you seen this stage last?
Is it possible he won't get worse? The doctor said it might stabilize.
I have watched all the Teepa Snow videos and they are good, but he is not bad like that at all. He can converse and be social and most people might not notice too much.
Maybe the neuro testing doc was wrong?
30 Answers
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I had my mother tested in 2016 b/c I knew she was going down the dementia road due to her memory problems & other symptoms. She was then diagnosed with progressive dementia after scoring an 18 out of a possible 30 on the MoCa exam. She could not draw a clock for the life of her, so we knew her executive brain function was definitely compromised.
But she could show-time up a storm b/c her social skills were not affected much at all. She dressed well, spoke well, didn't mix up her words, could carry on a social conversation like nobody's business, tricking everyone (including most doctors) into thinking she was perfectly fine. But she wasn't.
She went on like this, with relatively little trouble, for 3 years.
In 2019 after a bout of pneumonia, she was seeing mice crawling on the floor of the hospital when there weren't any. She scored a 10 on the MoCa exam at that time and became wheelchair bound. She was becoming confused with day/time/date as well, but she could still tell you how great you looked, and ask about your husband & children, tricking you into thinking she didn't have dementia at all.
That's when she went from Assisted Living into Memory Care, much to her chagrin because she 'didn't belong there', as she would tell you. But she did. Nowadays at 94.5, she can't remember what day of the week it is, even with the Alzheimer's clock I bought her which blares that information out in large neon green letters for her. She can't remember to look at it. She can't follow a conversation at all, and keeps asking about her dead mother & siblings, wondering why she can't get them on the telephone, in spite of being told they've passed away. She is STILL in possession of her social skills, believe it or not, so she's still tricking people into thinking she's better (mentally) than she is. She just called me to let me know she will be staying at 'the hotel' tonight because she was tired from being taken out to the bingo hall. She wasn't taken anywhere and she lives in the same suite of rooms at the Memory Care she's lived in since 2019.
The doctor was right about my mother's diagnosis in 2016, although she still doesn't believe she has dementia and we don't discuss it; what's the point? She's eaten a healthy diet her whole life, no drinking to speak of, no smoking, no drugs, etc. She was an avid walker her whole life and always watched her weight. I wouldn't call her an intellectual, but dementia has nothing whatsoever to do with one's intelligence or education level.
When I worked in a Memory Care AL, most of the residents were former doctors, lawyers, and engineers in their former careers. Dementia knows no social class, no education level, no income level, no nothing. It's an equal opportunity affliction, unfortunately. The smartest among us can get it and the 'experts' know little to nothing about the human mind to help us navigate the road or the journey to help our loved ones with it.
How long will this stage of your DHs issue last? Who knows. Nobody can tell you that. Just enjoy each day and relish your time together, that's my suggestion. Spend time together and do things you love to do. Nobody is guaranteed tomorrow in this life anyway, with or without dementia.
Wishing you the very best of luck finding peace and happiness, whatever tomorrow holds.
God bless you .
im 81.
i dont know how difficult or expensive an mri is if theres no physical problems to verify but you could ask.
That's the one thing I've said for a long time that I wouldn't want to lose - eyesight.
Of course having been down the dementia path with my mother, that's another, but that's a whole different ball game. Until she had a stroke, further disabling her, I kept her Mac Deg treatments going, to preserve her eyesight. She liked to "read" the paper and magazines, and REALLY liked sale flyers. With her quickly fading hearing and dementia, I wanted her to retain her eyesight..
Deepest sympathies to you dearest, I can't even imagine....
"In general, it involves diet changes such as eliminating simple carbohydrates and processed foods; regular exercise; stress reduction; good sleep habits; supplements like fish oil, curcumin and vitamin D; and, in some cases, hormone therapy."
MOST of these "changes" are recommended for EVERYONE, to be healthier. In some cases it might indeed help us to avoid some forms of dementia, or delay it at least, but cure? The only cure I see is keeping this doc's wallet fat.
University of California San Francisco, 2020:
https://www.ucsf.edu/news/2020/05/417431/pricey-protocol-not-proven-prevent-or-reverse-alzheimers-says-ucsf-neurologist
Pay no attention to that man behind the green curtain... But do PAY that man!!! Sure sounds like some pricey quakery to me... Again, some BENEFICIAL effects from lifestyle changes, reducing weight, heart disease, cholesterol, keeping us HEALTHY and ACTIVE, but curing dementia? Not likely.
I would get a good diagnosis from a neurologist to see where your husband is and if there are things that you can do for him.
Certain foods can enhance the brain and others can make dementia worse. I would discuss his diet with his PCP as well as neurologist. Dementia can be due to deficiencies in vitamins, infections and more. Our son is only 38 and has been diagnosed with dementia, his is due to neurological impingements in his spine/neck.
I agree with many other posters, make sure his diagnosis has had every possible scenario tested.
Best wishes
Thanks
About a year and a half ago I found a great OnLine “CareTakers” meeting and have have been attending faithfully. It has been so informative and helpful. I have also been tired and depressed. He lost all the things he loved to do , and I lost who he used to be .. A visit to my own doctor , an antidepressant and therapy ( one on one) for me has helped both of us . My understanding of what he is going thru has helped my frustration and anger of the extra amount of work that is falls on me these days . I never expected to be a CareTaker but he never expected to need one . In his reality , there is nothing wrong with him . It is not denial as we know it it is something called ANOSAGNOSIA.
prayers are with you ..
Angry he won't see his grandbabies grow up. I'm angry at everything going black in our lives and future...
Life just sucks some days. Other days we are relaxed, cheerful laughing as if nothing is wrong. It feels like one of us is crazy. What a life. Blessings to you.
Thanks. Blessings
I write from the patients perspective. I was diagnosed 5 yrs ago with Early Onset ALZ. I had my third Neuropsych Exam Mar 1 of this year, I received the results in late April with a diagnosis of Moderate to Severe Stages. When I was first diagnosed, I had very little trouble many didn't believe I had ALZ. I only began having word mix ups, no rarely confused vs now lots of times I am confused and have trouble following along with discussions. What I had trouble with Early on, was I had been in the Travel Industry for forty years. The last two yrs I was not meeting my goals and I had difficulty learning new Accounting Systems,, and Airline Reservations systems. I was fired for failing to meet those goals. Only then did my doctors say, oh we have to look into this more. I had a CAT Scan, Neuropsych Exam. When my Neuro doctor of 11 yrs at that point said, I should never go back to work, that it would not be fair to me nor my employer, and most important, my clients.
When I received the results of the Third Neuropsych Exam, my Neuro Doctor couldn't believe it. I was told in addition to the new diagnosis, I was also told that I required 24/7 care and supervision. My DW and children three of whom are adults and my teenage daughter, note, yes I have trouble now finding words, I stopped driving on my own 19 months ago. My Neuro Doctor said I am the first patient in her 20yrs of practice that ever surrendered their drivers license. The DMV didn't know what to do with me. The said the only people surrendering their license have been sent to them by the Courts or their Doctors.
I did score in the lowest 1% of men my age on the test. My DW and I arranged to have a follow up appointment with the Neuro Psychologist to make sense of the report. He said, he'd never had a patient who scored as poorly as I did who could carry on a conversation and ask question for an hour like I did. He told us what was different about his test vs my previous two was that his exam was based on Critical Thinking Skills. Anyone who knows me, would say they'd ever believed I could have a Critical Thinking answer ever. Proof positive, one can have a successful career without Critical Thinking Skills, when you are planning vacations around the world. Once I received the ALZ Diagnosis, things made sense to me and my DW. I retired and have been doing enough Volunteer Work that I have never had a bored moment in the 5 yrs I've been retired.
In addition to no longer driving, my DW told me it was time to turn in the credit cards, and access to cash. I did lose 4 credit cards that I've never been able to find somewhere in our house. We both have exceptional credit scores and we haven't ever had to pay interest on a credit card, they've always been paid in full. I still look at the bills, I write out the checks which my DW looks over and she then puts them in the envelopes and mails off the bills. I did that for the first 25 yrs of our married life. A couple of times I sent the wrong payment check with the wrong bill. I urge all patients that read this to think over these issues and make plans with your husband, wife or adult children in your life, and have discussions on how to handle these issues as they arise. We all walk the same journey, but we all travel our own route. I've learned alot from many of the posters to this forum and I hope my comments have helped others as I have been helped. God Bless you all, John
If he is disabled by the symptoms use the evaluation to apply for social security disability benefits. This can be a long process with denials and reapplications.
Once he is on social security he should have medical coverage and income.
Make sure you get POA, medical power of attorney, advice directive, trusts and wills done now. An elder attorney can help and your husband, or you may have access through his or your employee assistance program.
Although there may be special situations, in general if one is approved for SS disability, one qualifies for Medicare 2 years later, even if the person isn't 65 yet.
He is so close to the "early" retirement age that he may fall under this Medicare "rule." Quick recheck implies this is still the case (I had to wait 2 years.)
Just pointing this out so no one assumes they'll automatically get Medicare right away if they get approved for SSDI. There could be exceptions, but this is the general rule.
MANY, MANY thanks to whoever said check for B12!!!
Thank you all for this site.
sincerely, Happy Wife
His daughter was in denial, she thought that his having been a university prof and accountant meant his brain was strong enough to ward it off.
After he died of cancer, Mum asked me to help her with some bookkeeping he had done in the past for an organization she belonged to. I had to redo 12 months of accounting. In the early months it was minor mistakes, later the mistakes were compounded and impossible to fix. So I restarted from the last audit. There were other things on the computer that were worrying. He had forgotten how to create spreadsheets and there were hundreds of saved attempts.
But in the surface, if you had a conversation with him, all you noticed was the occasional inappropriate comment or misuse of words.
No one knows his dx yet.....
The speech difficulties do sound a lot like aphasia which can be brought on by a stroke.
Alzheimer's dementia is the most common type. This one is progressive and what most people think of when they think of "dementia." Usually this one starts with decision-making problems. Problems with memory show up a bit later. It is progressive and will become more and more debilitating. How soon depends on the person. There are medications to deal with the earlier stages.
Vascular dementia is the next common type. Some have theorized that Alzheimer's dementia is also a type of vascular dementia. This one is caused by either a blood clot (or multiple blood clots) or a "bleed" in the brain that damages brain cells. Depending on where the damage is, there is a problem in behavior or movement or some ability. If anybody has signs of a stroke, get them to the emergency department within 3 hours and the clot-type stroke can be reversed. If a person who tends to get strokes is managed medically by a doctor, the dementia should not progress since there will be less chance of new clots or bleeding in the brain.
Parkinson's disease is the least common type of dementia. Usually the stiffness is the early symptoms and the dementia is a much later symptom. Unfortunately, this one progresses as well. There is medication to help manage the earlier stages.
The only way to know what you are dealing with is to get an evaluation. Some family doctors are able to do this. All neurologists are skilled in this type of evaluation and treatment.
I was given a home healthcare admission to evaluate a woman given a new diagnosis of Alzheimer's. The daughter was present. The woman was pleasant but clearly not fully aware. A few minutes into getting data, the daughter said to me, "I don't think it's Alzheimer's." I asked her what made her think that. "Up to 2 weeks ago she would go to bingo and do a 20 card game." I told her as a nurse I wasn't allowed to diagnosis but it sounded more like a stroke to me. Alzheimer's does not come on like that. She took my advice, took mom to Mass General and indeed the diagnosis was stroke. We came back with Occupational Health to work with her on memory.
Good luck getting the right answers or at least confirming and beginning to make future plans (including POA for health and finance).
Honestly, that neuro doesn't sound like he does a thorough job, although that could be because you only reported doc said it could stabilize. If that's all he said, I'd consider his ability iffy! Did he actually diagnose dementia? Did he perform testing and scanning? Did he mention a stroke or TIA? Did he identify the underlying cause? If he only did a cursory exam and questioned him (or you), then he hasn't done his job!
Dementia is just an umbrella term that covers many types of cognitive disorders. He could have one or it could be something else. YOU definitely need more input. We aren't doctors, so we can't really say, esp based on the limited information we have.
See my response to sjplegacy
It would depend on the type of work he does. Someone that has to take phone calls, instruct other people and communicate with others is going to have a problem doing their job. If he works alone and is otherwise self motivated he can probably work without much of a problem.
You say he is the boss...does he have a boss or does he run the company?
If he owns the company has there been any thoughts as to what to do when he can no longer function effectively? And before the company suffers.
If he works for the company It might be time to look at a retirement plan before it gets to the point where he is fired.
Dementia usually does not "stabilize" there is a continued decline. Sometimes slowly sometimes rapidly depending on the type of dementia.
You can have another doctor repeat the testing for a second opinion and to rule out any other medical causes. But it is a good idea to plan for the worst. Even if the problems have been caused by another medical condition damage to the brain does not reverse. The brain may find new pathways but damage done is damage done.
Im a new gramma myself and love it! He is actually the owner of several businesses. He's so angry at the neuro doc who did all the testing, he will never go back. Refuses all meds. Refuses any more evaluation. Just wants to be left alone!
None of his employees or staff know the dx. He is super private.
If they suspect anything, no one would dare say it.....to him or me...I pray they will soon!
He Just agreed do do the DPOA etc...but says I'm not dead yet!
I told him it's for my peace of mind...
He can chat and joke and act normally all day and at conferences, weddings, & events, but is mentally exhausted at the end of the day.
Praying is all I can do at the moment....
You might have husband start taking vitamins that help the memory.
Also he should have a urine and blood work done to make sure he doesn't have a UTI or deficiency in Iron, ect.
Prayers
Mild cognitive impairment (MCI) can be a precursor to dementia. Early dementia may be MCI, a condition that affects memory and speech but doesn't interfere with day to day living. Some people with MCI do stabilize, while others progress into dementia. Dementia, in itself, is not a disease, but a combination of symptoms caused by a disease. Alzheimer's dementia is the most prevalent cause of dementia. If your husband truly has dementia symptoms, it's hard to say how long the early stages will last. The symptoms are progressive and worsen over time. Typically, someone diagnosed with AD lives from 8 to 20 years after diagnosis.
So make certain the dr. has eliminated all the treatable conditions, and if so, make sure he/she gives you a diagnosis of the cause of your husband's dementia.
This has a good description and some common causes (don't be alarmed, until the cause is determined, worry won't help - it's best to try to find the cause and then focus on what, if anything, can be done to minimize or treat the condition):
https://www.mayoclinic.org/diseases-conditions/aphasia/symptoms-causes/syc-20369518
Dementia is just an umbrella term that covers a multitude of conditions like Alzheimer's, vascular dementia and so on. If it is indeed some form of dementia, then knowing the underlying cause IS important as symptoms and progression vary based on the cause. These can vary even if the underlying cause is the same. It depends a lot on what part of the brain is impacted, and likely is also impacted by a person's past, personality and skill set.
But, before getting overly concerned, the best thing to do is get more testing done to eliminate other causes (some medical conditions can cause dementia-like behavior or symptoms.) Rule out what you can, then the docs should focus on what the cause is, if nothing is found. Good checkup, blood work, urine culture, etc. Some kind of scan can determine if there's been a stroke, TIA, and possibly other changes in the brain.
Knowledge is your best defense when dealing with these kinds of issues. Hope for the best, plan for the worst (others suggested getting all legal documents in order - that applies to ALL of us, not just those with issues!!!)
Although we never had testing done, my mother was also able to "appear" somewhat normal to others. She was 90ish at the time this started. Even my brothers didn't notice it until long after I brought it up. I just had to work it out myself and plan/help where I could. Even after they realized something was wrong, they didn't take the time to learn or understand. In her case, I believe it was vascular dementia. This does tend to hit plateaus and "stabilize", then a drop off can happen, with another stabilization. She was on medication for high BP for many years, so this would predispose her to vascular issues. Possible TIAs? Hearing loss can also contribute (she wore hearing aids for a long time.) She made it to 97, the last 4 years in MC, but it was strokes that took her, not the dementia.
She really didn't really have issues with words - only once that I can recall, saying my YB didn't seem "friendly" when asking if I'd seen or heard from him. I don't think that's what she meant, but sometimes you just go with the flow. The big signal was repetition, repeating statements and questions in short time spans. Misplacing one's wallet or keys isn't always a sign of dementia. Putting them in odd places maybe more likely. Being able to retrace your steps and possibly finding the "lost" item can help determine if it's just aging or not.
I would get with his doctor (doesn't have to be the neuro) and start with the simpler tests, to rule out other medical issues (infections, UTI and others, can do odd things as we age!) If nothing shows up, then perhaps go for imaging (this may require working with the neuro, though regular doc might be able to coordinate or order the testing initially.)
If it is some kind of dementia, keeping him active, both physically and mentally, can help delay the progression in some cases. This is why it is important to determine the cause/type, if they can, because there are differences in symptoms and progression and different ways of dealing with the behaviors and symptoms depending on the cause.
Meanwhile, get all the legal issues in order - these are important no matter who we are or what issues, if any, we have. You never know what tomorrow might bring...
The important thing is to know that you'll likely notice his issues more than others will because you're closest to him. It's your job to make sure he isn't a danger to himself or others (driving when he no longer should, for example) and be sure he isn't endangering the family business.
Just be sure to have all his affairs in order (yours, too) with powers of attorney (durable and medical), trusts, and wills before he's no longer competent to assign them. You don't want something to happen to YOU and there's no one assigned to handle his care other than you. That's why both of you need these documents now with secondary and even tertiary people named.
My dad was the healthy one caring for Mom as her dementia worsened, but then he died first. Fortunately, we had all the paperwork lined up already, so I could take over right away. In fact, I took over as Trustee of their trust before he died, because he and my mother resigned as trustees when Dad became sick.
I hate to say it, but don't assume you'll always be there to care for him.