MCI, Dementia, or AD, is there any difference?

Posted by csrb7007 @csrb7007, Sep 14 2:18pm

My wife started exhibiting symptoms of dementia 6 years ago. Asking the same questions from time to time, not paying bills, etc. Being as she’s a quiet, introverted person to begin with, it wasn’t easy to see the decline. Once we figured it out, I took her to a neurologist (in 2021). He ordered scans, conducted tests, and mentioned MCI. 6 months later he retired. The office said they hadn’t hired a replacement and had no availability with the neurologists on staff. Needless to say, we didn’t find another doctor until 2023. The new guy ordered scans, conducted the assessment, and again, didn’t want to say what she really has. (I’m also working on a referral to UVA’s NeuronDept). I eventually signed on with Dr. Dale Bredeson’s group out out San Diego. They ordered blood test that required 12 tubes of blood to be drawn. 8 weeks later we had a very comprehensive report detailing biological shortcomings, deficiencies, and abnormalities and provided guidance in resolving them. Still, no diagnosis. I also took her to a functional medicine doctor who placed her on BHRT. We are also in the gym 4-5 days a week, with trainers working on progressive weight training as well as cardiovascular training. Most people say she appears to be doing better. We’re also trying to eat very healthy. Oh yeah, she’s stop taking all her meds.

I’m a simple guy who tries to research this ad-nauseam. Does it matter what she really has? Any recommendations?

Interested in more discussions like this? Go to the Caregivers: Mild Cognitive Impairment (MCI) & Dementia Support Group.

In my opinion, treating the symptoms and preparing for eventual decline is of far greater value than a decisive diagnosis.

There are exceptions of course.

B12 deficiency is easily reversible.

Less common, some would rest for lynes disease, as it us reversible with treatment.

Diabetes should be ruled out.

vascular dementia, from many small strokes requires keeping her cholesterol controlled and performing some simple heart tests to rule out a hole between the chambers of the heart that would allow a clot from the legs to result in a stroke would be valuable. But shes had a CT scan so this is likely not the cause or the doctors would have told you.

Another reason a definite diagnosis would be important is if it was genetically related, so children, etc could have the chance to be tested. This is pretty rare.

There are a few even less likely causes where a definitive diagnosis is needed. But with 12 tubes of blood this has likely been done.

If you live near UVA, i highly recommend Dr Patricia Shipley in the memory clinic. She is wonderful and takes time to answer questions and make helpful recommendations and referrals. She was practicing when i keft cville in 2024. I hope shes still there.

Good luck to you!

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Profile picture for laura1970 @laura1970

In my opinion, treating the symptoms and preparing for eventual decline is of far greater value than a decisive diagnosis.

There are exceptions of course.

B12 deficiency is easily reversible.

Less common, some would rest for lynes disease, as it us reversible with treatment.

Diabetes should be ruled out.

vascular dementia, from many small strokes requires keeping her cholesterol controlled and performing some simple heart tests to rule out a hole between the chambers of the heart that would allow a clot from the legs to result in a stroke would be valuable. But shes had a CT scan so this is likely not the cause or the doctors would have told you.

Another reason a definite diagnosis would be important is if it was genetically related, so children, etc could have the chance to be tested. This is pretty rare.

There are a few even less likely causes where a definitive diagnosis is needed. But with 12 tubes of blood this has likely been done.

If you live near UVA, i highly recommend Dr Patricia Shipley in the memory clinic. She is wonderful and takes time to answer questions and make helpful recommendations and referrals. She was practicing when i keft cville in 2024. I hope shes still there.

Good luck to you!

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@laura1970 Thank you for the reply and thoughts on the matter. In 2020, my wife and I had calcium heart scans and she had a 85% blockage in her LAD so my assumption is that there is a vascular dimension to her disease. The Bredesen testing also revealed she has 1 copy of the APOE4 gene. Her hormones were very low as well.

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My husband was diagnosed in 2013 with MCI based on neurological testing. We saw the neurologist for a few years but then the testing was so frustrating for my husband he stopped going. Seven years later saw the same neurologist and through the verbal exchange he diagnosed mild to moderate dementia. No precise diagnosis but truly no successful treatment for dementia so does it matter to have a name attached? He has a long (44 year) history of heart disease so I suspect vascular dementia. Initially we particpated in a program which was helpful on diet, stress management, calendar keeping. Now we just get through the day as best we can. Keeping him safe, content. For myself.....self care as much as possible and doing something I enjoy while keeping him close.

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Profile picture for csrb7007 @csrb7007

@laura1970 Thank you for the reply and thoughts on the matter. In 2020, my wife and I had calcium heart scans and she had a 85% blockage in her LAD so my assumption is that there is a vascular dimension to her disease. The Bredesen testing also revealed she has 1 copy of the APOE4 gene. Her hormones were very low as well.

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@csrb7007 I’m curious about her age, but please, I know this is a delicate question. No need to answer.

Also, a trick to see dr Shipley earlier ( she has a very long wait time) is to make an appointment with her through general neurology instead of the memory clinic. You will still see her without changes. Just feign ignorance if asked when u show up. After your initial visit I would presume follow up would be in the official memory clinic in much less time. I’m pretty sure the only difference is that in the memory clinic they have nurses well trained in dementia patients and you will get this on second visit and going forward. It might make the wait time a few months shorter.

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Profile picture for csrb7007 @csrb7007

@laura1970 Thank you for the reply and thoughts on the matter. In 2020, my wife and I had calcium heart scans and she had a 85% blockage in her LAD so my assumption is that there is a vascular dimension to her disease. The Bredesen testing also revealed she has 1 copy of the APOE4 gene. Her hormones were very low as well.

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@csrb7007 to my knowledge, a vascular dementia requires evidence of at least one small stroke, usually many, not simply atherosclerosis.

I don’t mean to sound dismissive. Atherosclerosis is a whole body disease, including blood vessels in the brain. My thoughts would be to treat atherosclerosis (cholesterol mostly) as aggressively as her dementia warrants. In other words, the more functional she is, the more aggressive the treatment would be. Lifestyle changes are likely to do no harm, but every medication is a chemical with side effects and such. With the information in front of me, the biggest issue is the 85% LAD lesion. I would leave treatment of this to her cardiologist and PCP.

Another good specialist to have in your arsenal is a palliative care doctor. They are very good at balancing the pros and cons of various treatments. Some have the belief that these doctors only treat hospice or patients nearing end of life. Nothing could be further from the truth. They are available to anyone and are well versed in a multitude of areas that you might find helpful. Consider googling to find out more.

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Profile picture for csrb7007 @csrb7007

@laura1970 Thank you for the reply and thoughts on the matter. In 2020, my wife and I had calcium heart scans and she had a 85% blockage in her LAD so my assumption is that there is a vascular dimension to her disease. The Bredesen testing also revealed she has 1 copy of the APOE4 gene. Her hormones were very low as well.

Jump to this post

@csrb7007 my mother and both my grandmothers have/ had Alzheimer’s. My mother also had one copy of the APOE4 gene, so my brother and I were tested.

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@csrb7007 My husband has vascular dementia probably due to his history of atrial fibrillation. This is an arrhythmia that can send tiny clots to the brain. In effect causing tiny mini strokes that over time cause damage to the brain. He also has several other risk factors which he has tried to address with medications and treatment for his atrial arrhythmia and also the fact that his father had vascular dementia. When his memory tests at the doctor's office showed decreasing cognitive ability he was referred to a neurologist. My husband who is a physician refused saying that "they are only going to tell me what I already know" He knew that he was beginning the path that his father went through. We knew that there is no cure for vascular dementia. He does not have Alzheimer's as we had the blood test for the amyloid plaques and tau particles and his score was so low that it is extremely unlikely. So he was not a candidate for the infusions that are now being given to slow down the progression of that disease. Was your wife tested for this?
My husband is in stage 6 of the FAST scale. You can find it on the internet. This is a tool that helps medical personnel and caregivers determine what the patient can still do and develop a care plan based on that. My husband is entirely dependent on me for every aspect of his care. He is not capable of make any decisions regarding healthcare, finances, etc. I as his durable power of attorney for healthcare in consultation with his long time internist have adopted the paradigm of "quality of life over length of life". Thus, every proposed intervention is held to that standard. He has significant chronic back pain after two spinal surgeries that make being out of bed for more than an hour very difficult. It is my firm belief based on what we have discussed in our 45 years together that he would agree to quality of life over length of life. So I make sure that he is able to stay in his own home, be with his grown kids and grandkids on a regular basis and have longtime close friends and family come for short visits. He is not able to carry on a conversation only one or two word answers but I do think he still recognizes them. Having been on this dementia journey for 4 years now, I understand how frustrating and scary it is in the beginning when answers and providers are hard to come by. I would suggest that you educate yourself about dementia, its various forms and stages so that you will be better prepared for what you may encounter in the future. I have taken online live classes with Teepa Snow's Positive Approach to Care series- the Champion courses. Teepee Snow is a well known and respected expert on dementia caregiving. This enabled me to know where we are in our journey and the best way to provide care for my husband. I also suggest that you keep posting here with whatever is on your mind. We on this page can all relate to your situation and can offer ideas and suggestions that have worked for us. May God bless you and your wife on this very difficult, lonely and frustrating journey.

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Profile picture for laura1970 @laura1970

@csrb7007 to my knowledge, a vascular dementia requires evidence of at least one small stroke, usually many, not simply atherosclerosis.

I don’t mean to sound dismissive. Atherosclerosis is a whole body disease, including blood vessels in the brain. My thoughts would be to treat atherosclerosis (cholesterol mostly) as aggressively as her dementia warrants. In other words, the more functional she is, the more aggressive the treatment would be. Lifestyle changes are likely to do no harm, but every medication is a chemical with side effects and such. With the information in front of me, the biggest issue is the 85% LAD lesion. I would leave treatment of this to her cardiologist and PCP.

Another good specialist to have in your arsenal is a palliative care doctor. They are very good at balancing the pros and cons of various treatments. Some have the belief that these doctors only treat hospice or patients nearing end of life. Nothing could be further from the truth. They are available to anyone and are well versed in a multitude of areas that you might find helpful. Consider googling to find out more.

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@laura1970 I wholeheartedly agree with you regarding the atherosclerosis. She was stinted as soon as we discovered it. Thank you for the great advice on palliative care.

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Profile picture for laura1970 @laura1970

@csrb7007 I’m curious about her age, but please, I know this is a delicate question. No need to answer.

Also, a trick to see dr Shipley earlier ( she has a very long wait time) is to make an appointment with her through general neurology instead of the memory clinic. You will still see her without changes. Just feign ignorance if asked when u show up. After your initial visit I would presume follow up would be in the official memory clinic in much less time. I’m pretty sure the only difference is that in the memory clinic they have nurses well trained in dementia patients and you will get this on second visit and going forward. It might make the wait time a few months shorter.

Jump to this post

@laura1970 She’s 67 years old. And thanks for the great advice on seeing Dr. Shipley!

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My gut reaction in reading this, is to just follow through with the suggestion you were given on Dr. Shipley in Virginia in a specialized memory care facility OR one of the Mayo Clinic locations. Have those specialists look at the records you have, the blood work she did, and finalize some diagnosis. I remember back in 2008 when I had doctor after doctor trying to diagnose our issues, we finally went to Mayo Clinic in Rochester - the best move I ever made. They are specialized. They know. And they can diagnose your wife there. And do the right tests, that give you peace of mind, so you know what she has and how to treat it. Sounds like you've been to doctor after doctor and still questioning. I just find, going to a specialized place that treats far more than the norm, is worth its weight in gold especially after what you've been through with doctors leaving, waiting for another, and still no diagnosis.
Best, Karla

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