Regarding an MCI diagnosis

Iris L.

The time of MCI or "we don't really have a diagnosis" is a time to get active.  I read a lot of posts of little activity.  Many people will claim that there is nothing that can be done.  I disagree.  You don't know what will happen and neither does your doctor.  Some population of MCI will improve, some will remain the same indefinitely, and some will progress.  No one can predict from the MCI stage.

Now is the time to search for and address possible contributing factors.  These are vitamin B12 deficiency, thyroid and other hormonal problems, hypertension, diabetes and other problems along these lines.  Learn about sleep apnea and other sleep problems.  If there has been a history of major depression or head trauma learn about and address; these are complex issues and signs and symptoms often overlap dementia.  Learn about the best nutrition for brain health, also learn about exercise.

Now is also the time to make legal, financial and household preparations, while your LO can participate.  Think about if you want to move.  Again, you don't have to know if there will be progression at this time.  But prepare yourself for the worst.  At least, make a written plan of what steps you will take if you do see progression.  Then you won't be caught off-guard.

If your LO is still working with MCI, think about retirement or job accommodations, whatever is feasible.  There is a lot of guidance available.

Think about your Bucket List.  Take photographs, make memories.  Do it now, don't wait.  PWDs don't travel well.

I was diagnosed as cognitive impairment not otherwise specified in 2009.  In 2022 I am better in some areas, worse in a few others, but still living independently.  I am still struggling and yes, it is very hard for me every day.   It has taken me a lot of discovering about my own health.  Some doctors and counselors told me to give up and accept that I had Alzheimer's Disease.  But I didn't give up.  I won't give up.  My neurologist has been supportive and therapeutic.  Be sure you have a good doctor.

Stay encouraged in MCI!

Iris

Ed1937

Iris, that's an excellent post. I hope others will heed your advice.

JJ401

Excellent post. Excellent advice.

Joydean

Iris best advice I’ve seen. Wish I had known all that 7-8 years ago. Those just getting that diagnosed I hope will read and learn. I remember Hoot advising new members to take the advice given and not put it off, I hope many will now take this advice you are giving. Thank you Iris!

ImMaggieMae

Excellent post, Iris. Very good advice. You’re right, a good doctor or doctors is very important. It can make a huge difference.

zauberflote

Bravo Iris! Well spoken.

Iris L.

I forgot to mention the memory medications, Aricept and Exelon patch, and Namenda.  They may or may not help. The first two, along with galantamine, work differently from Namenda.  All are available in generic form.  These meds have side effects, and must be begun slowly.  The dosage must be titrated, one dose does not fit all.  Even though the medications are not recommended for the MCI diagnosis, my neurologist offered me low dose Exelon patch and I had an immediate positive response to it.  I have been on it ever since, at a higher dose.  I am also on memantine, generic for Namenda.

Research, and post questions.  Here is where you may most likely find answers.  The doctors are trained in drug therapy and testing; they are not that familiar with day to day caregiving or what to do overall.  Ask them questions but don't be surprised when they seem vague or discouraging or not up to date.  They don't know much about MCI.  You will have to educate yourself. Don't give up!

Iris

Marie58

Excellent posts, Iris. 

I so admire you for your good advice, for educating us, and for the fight in you. You don't give up and that encourages all of us. Keep it up!

Dio

Iris, you're amazing!

ImMaggieMae

Iris, thank you for all of your information. You mentioned Namenda. Does it make you drowsy?  My husband’s neurologist increased the dosage of Memantine (generic version of Namenda) and has been experiencing some drowsiness with the increased amount. Just wondered if you had that side effect.

Iris L.

Maggie, I had the opposite effect from Namenda.  I was prescribed a dose pack beginning at 5 mg daily for one week, to increase to 10 mg, then 15 mg, then to 20 mg, increasing weekly.  When I reached 20 mg, I developed insomnia.  So I went back down to 5 mg, and increased slowly at two week intervals.  With this slower schedule, I did not have insomnia.  

Although the recommendation is one 10 mg tab twice a day, because of the long half-life, my neurologist told me I could take the entire dosage, 20 mg, at once.  I took it in the morning.

There is an extended release formulation for memantine.  You could discuss the drowsiness with the doctor or the pharmacist, and discuss changing the dosing to bedtime or using an extended release formulation.

I don’t want people in the early stages to do nothing.  Often, the doctor's manner seems to be: wait until it gets worse, then we'll do something.  But by then, it may be too late!  Don't wait!

Iris

Iris L.

TTT for ChrisNichols

elainejr

My husband was diagnosed MCI a couple years ago. The memory is in steady decline. He is still able to drive, shop, do laundry, go to any store and buy anything we need…..for which I am grateful. He is a lay pastor and can still to fill in for pastors as needed. In fact that is a good mind exercise for him. I have taken over all the finances and we have begun to look at other housing….not there yet. 6 months ago his dr, prescribed Aricept, but he had horrible nightmares followed by insomnia so he stopped the drug himself, She says there is nothing else at this time because he is not diagnosed with dementia. It seems I am reading other things have been tried for others here. How do I go about knowing about these and asking about these.

M1

Welcome to the forum Elaine. This is kind of an old thread from 2022; you will get more responses if you start a new discussion (look for yellow button to the upper right).

You may have access to the more recent medications (though controversial) if you have him followed at an academic research center for Alzheimer's and dementia. It is the early cases that are most likely to benefit, so to have someone follow him serially might help.

Delinda60

Wow, I am also new here and you guys and your advise are amazing!! My husband began experiencing problems early last year. He lost his job due to his memory decline. Fast forward to this year and it is even worse but neurologist will not diagnose him with Dementia/Alzheimers. She just says MCI. He is scheduled for a 2nd opinion with a different neurologist on May 31st. The other neurologist a couple of weeks ago when we went back to let them see his further decline, did prescribe Aricept but he hasn't started taking it yet because of the upcoming neurology visit on the 31st. I am afraid if it does help him then the new neurologist will think there is nothing wrong with him. Am I being paranoid or is this the right thing to do?

mrl

WOW!! Thank you, Iris- had no idea.

M

PattieD

Thank you ALL for such honesty and information. My husband was diagnosed with MCI about 6 months ago, and then when we both discussed his symptoms with his care manager and asked for meds, she changed the diagnosis to Frontal Tempural Dementia (after a MRI with contrast) and told us she and the memory team had looked at his results and behavior changes and were 99% sure of the diagnosis. But... when she explained to him that she was listing it as possible because a full dementia diagnosis requires a notice to DMV, he threw a fit and called her back for another appointment and insisted that she remove the diagnosis and take it back to MCI so he could continue to keep his license without testing every year. He also took Aricept for less than a week and reported "I do not have any problems with my memory or abilities, and I do not need this stuff!" She removed the diagnosis in his chart, but left the notes of that visit and their findings. That is where we are at the moment. That was a couple months ago. I am seeing a slow decline and if there's something gong on with a lot of activity or noise, he becomes agitated easily. At times he is overly reactive to a change in plans and seems to want to be in control of all things at all times. He asks the same questions over and over and is extremely resistant to suggestions or help. Is this normal?

Iris L.

Welcome new members! Please read about MCI. If you have a question or would like to introduce yourself, please feel free to begin a new thread and follow the prompts--then many members will see and be able to respond to you.

Iris