Mild global volume loss, now it is mild intracranial atrophy

Dear @dig2dye2
I don't know if there is a standard meaning to those terms, so I looked them up. They are not two levels of loss. They are measures of two different things. Here's a summary of the Google AI summary:

Brain Atrophy: Refers to the loss of neurons and the connections between them, which leads to a decrease in brain tissue.

Brain Volume Loss: Refers to the physical reduction in the size or mass of the brain, measurable via imaging like MRI. It can be generalized (across the whole brain) or focal (specific areas).

The loss of the connections that allow our brains to process information and control our bodies, communicate, etc (Atrophy) are seen as enlarged ventricles (the fluid-filled spaces in the brain) and wider sulci (grooves on the brain surface). The brain Volume loss shows up as a lower ratio of brain tissue to total volume inside the skull.

I recommend not focusing much on this. it describes his brain physically, but not in terms of its functions. Also, in our desire to get some handle on where we are in the process of the disease, it is tempting to try to extract as much meaning as possible out of "Stage" descriptions or imaging reports. In 16 years of living with my husband's Alzheimer's I have learned that standard characterizations and Stage systems are not very useful because each person's progression is so unique. My husband has not met the supposed characteristics of Stage 7 in the one year that we have been told he is in that stage. In his case, I have been fortunate that his progression has been slower than his doctors predicted. In other cases, friends have had the opposite experience.

We are the Specialists who can diagnose our loved ones best: The measures that really matter to me:
1. What he can still do. Are we enjoy those capabilities while we can?.
2. How he feels. Am I ensuring that he feels the elements of being whole -- that he is still himself, that he can feel joy, that he has his dignity, that he is safe and calm, that he matters and is connected?

It is clear that you see big changes in your husband. Six years is a long time in our world. At first our lack of knowledge makes us react to the changes with fear. As we gain in experience, we get used to enjoying the moment, while looking ahead in order to prepare for the potential next changes. In that stage, for many of us, our love may evolve from spouse to spouse/mom. Later, their decline sometimes requires much bigger changes in your lives. Was there a particular reason for the MRI? Are you trying to understand changes that have happened or may be coming? Maybe we in the community can help.

Wishing you the best!

You are 100% correct.

His ENT asked for the MRI hoping he would find a reason for his hearing loss. Ears were normal, but of course the brain must be mentioned in the report. Global volume loss vs atrophy sounds as if his brain is physically degrading. The neuro connections degrading are very significant for him.

Our case of complicated: he has profound hearing loss that is slowly getting worse and REM Sleep Behavior Disorder. We were told he has either FTD or Alzheimer’s and is currently at an MCI stage. They couldn’t definitively say. I just hope it isn’t Lewy Body manifesting…. It’s pretty common with his diagnosis. along with Parkinson’s.

I need to be more grateful for the good days. I am just so sad about the whole thing and the engineer mind I have wants answers and a fix.

I won’t get that, yet any little piece of information sends me down that path.

Today is a new day and it’s starting out nice. Mornings seem somewhat normal and I need to embrace them.

Thank you so much

I wrote his doctor a note asking for him to get with a neurologist and ask what his results mean. This was my new age answer from medical groups that don’t want to put out any effort.

“"Brain loss" and "atrophy" when noted in a MRI report generally referred to the same thing. St. Luke's neurology department is not accepting referrals for memory loss at this time. The medications that we sometimes use for memory loss can be managed by primary care clinics, and if you think that he is progressing to the point of needing a medication I am more than happy to help out.”

He has so much more than memory loss…

Let’s just give him pills! I wish I lived closer to a Mayo…

@memoriestomoments Beautifully said: The measures that really matter: "What he can still do. Are we there to enjoy those capabilities while we can?
2. How he feels. Am I ensuring that he feels the elements of being whole -- that he is still himself, that he can feel joy, that he has his dignity, that he is safe and calm, that he matters and is connected? That he matters is such a special, loving thing to say, and a tribute no matter what stage of the disease they are in. Your handle" memories to moments" resonates, from your earlier post, that I clipped and saved. I'm reading it now.........
Making the most of our "Memoried life together while we can, evolving into a "series of pleasant moments". Considering quietly and lovingly taking control.....And finding ways to bring each other joy no matter what stage we're in. I printed a "old picture" of my husband's 900-pound tuna he caught on Cape Cod waters, framed it, and gave it to him last night for Mother's day weekend. That's the best gift I can give myself as a mother to caregiver. Seeing him smile, just brightened by day. His picture is now up on the table along with his other "Captain Eddie" memorabilia he still remembers. That must be the moments that @memoriestomoments is referring to. Thank you again, for that wonderful post.
Best, Karla (Happy Mother's Day to every caregiver out there!)

@kjc48
I was so happy, envisioning the framed photo of your husband's catch and his smile. What a perfect reminder to him of a part of his identity that gave him joy and pride. He may forget about that soon, but you have the photo to bring back that same glow again.

I also like talking about those proud or laudable parts of his past when we are with other people. It brings him into the conversation now that he cannot express himself. It also gives the others a way to relate to him at the time and on other occasions.

Happy Mother's Day, Karla. It is clear that you are a born nurturer and we are all benefiting from that!

@memoriestomoments Smart lady you are about bringing him back into the conversation with others. Ditto, to you too! for being a born nurturer as well.......Appreciate your gift of sharing. Best, Karla

Just some random thoughts from an old R.N. and dementia care partner. Some loss of brain tissue and volume is normal as we age. That is why blows to the head are so dangerous for older people especially if they are on blood thinners. When the head receives a blow the brain "bounces" more inside the skull because there is now more room and blood vessels tear, bleed and that blood takes up space in a rigid skull putting pressure on the brain. My husband fell out of bed, hit his head, was knocked unconscious and spent four days in the Neuro Intensive Care with a brain bleed this last May. Falling is not uncommon at some point in dementia (brain failure) because the area of the brain that tells your body where you are in space deteriorates as well as your sight. He has also fallen and cracked a rib, and broken one of his vertebrae. I was surprised to learn from my dementia care partner courses that dementia patients eventually develop binocular vision i.e. they lose peripheral vision. That probably accounts for at least one of my husband's past car accidents. He no longer drives.
I heartily agree with what "memories to moments" says about finding out what your husband can still do and work with those skills and make the necessary adjustments for what he is no longer capable of doing/perceiving. This is one of the main recommendations of the Positive Approach to Caregiving curriculum. I think what is most helpful to both the person with dementia and his care partner is to learn as much as you can about dementia (all types). I highly recommend Teepa Snow's Positive Approach (Teepa Snow.com) Caregiving Champion Courses (4). I still get supportive emails with short video lessons to help. The last one was about our need to "correct" the dementia patient when something said is incorrect. Not useful to either of you.
It was so helpful to me to research what I am dealing with now ( knowledge is power) in his late mid stage dementia and what I would likely be dealing with going forward. The courses are available live online with the ability to ask questions of the instructors. There is a cost but to me it has been absolutely worth it for my sanity and taking care of myself. I like that it addresses our feelings such as fear of the unknown, loss of the life we thought we were going to have, anxiety, the ambiguous grieving of loss of the person we love-"he's there but he's not there"-that we care partners will experience, how to recognize them and tips for dealing with them. I hope you keep posting here. It is a safe place to share what you are dealing with and in my experience get some heartfelt support and advice that may work for you and your situation. May God give you the strength and courage to forge ahead. Hugs to you and your husband.

@dig2dye2 You are absolutely correct when you state that your husband has so much more than memory loss. Yes, memory loss is part of dementia (brain failure) if that is what is going on with him but only part. The entire brain is affected. My husband has not seen a neurologist even though his internist noted his worsening results on the in-office memory tests and suggested the consultation. There were two recommended neurologists. One had a waiting list 6 months long and the other was a "concierge" neurologist. That means you have to pay a yearly fee to be one of his patients. No thanks. And more significantly, my husband refused a Neuro consult, because he is a physician himself, and said that "they are only going to tell me what I already know". Both his parents had dementia. So we, mostly I, have worked with his internist to create a specific plan of care going forward. He was prescribed Donepezil, a common medication used for dementia and it has not caused any side noticeable side effects. It may be slowing his progression but there is no way to know for sure. Your current doctor has offered to do this. I assume that he has already done the standard blood tests to look for elevations or deficiencies that may cause dementia like symptoms. I also asked my husband's internist to order a new blood test to detect the components in the blood that have been associated with Alzheimer's disease. He has not had a PET scan of his brain to look for the amyloid plaques and tau particles that are seen with an Alzheimer's diagnosis. A blood test seemed to be a simple way of checking this. This is useful information if you are considering the new infusions to treat Alzheimer's and are only recommended for that type of dementia. My husband had a very low score so it is likely that he doesn't have Alzheimer's but some other form of dementia. I have found over the years that one (anyone) needs to have a patient care advocate to be able to negotiate the "healthcare" system in this country. Patients often don't hear/understand/remember all of what is being said in the office. I aways go prepared with list of questions of I want to know and write the answers down before I leave the room. I imagine that by default with most dementia patients that their care partner will be their spouse or grown child. I strongly suggest that you educate yourself about all types of dementia if that is what you think is happening with your husband. Put everything that has to do with his condition in a binder dedicated to his care, doctor visits, what was discussed and recommended, lab tests, imaging studies, CT, MRI and any dementia support resources in your area. Ideally he would have a work up with someone who can confirm your suspicions. It doesn't necessarily have to be a neurologist. Geriatric internists might be able to do this and may be easier to get an appointment with one in your area. Also I would contact the American Alzheimers Association to see if they know of any such resources in your area. I will keep you and your husband in my prayers. Keep posting here on this site. I believe that we can all appreciate the situation you are in now and can try to give you the emotional support that we all need.

In 2016 a friend of ours, who is an Opthamologist noticed my husband was a little off balance and had trouble with the restaurant check when we were out to dinner one night. He called me the next day and suggested an MRI. I kind of resented the call but had his doctor, a close friend, order the MRI. It showed atrophy of the brain - normal aging. My husband was 69 1/2. We did see him “slipping” and it was definitely time to let go of his dental practice.

His doctor did nothing and for the next five years he had no other follow up or tests for dementia- no testing not even the simple ones they do routinely now after age 65.
And so we lived through the pandemic and he continued to have some memory problems. But we considered it “normal aging”. Then he had an episode of vertigo and fainting and went to the ER in 2022. The MRI showed atrophy of the brain with White Matter involvement and microvascular ischemia, - still did nothing.
Looking back there were signs of dementia creeping in over the years but we were all in denial - “normal aging.”
In 2021 on our Spring vacation he woke up and was shaving at 2 AM - Odd, I didn’t handle it well and did notice difficulty sleeping.,
We went on vacation in 2022 and he had anxiety with driving and overall anxiety in life. I felt he needed to see a specialist but who? There was no Alzheimer’s or dementia in his family so we weren’t thinking that. We were thinking anxiety. My doctor recommended a neuropsychologist but we could get in til April 2023 - When I told his PCP I was acting on this he immediately got my husband into a gerontologist who specializes in dementia. That was early 2023.
He was diagnosed w MCI and had the sleep tests and driving test.
No meds ( I sometimes wonder if we had acted sooner if he would have started the Aricept etc then would have helped?)
He passed the drivers test but had a ding accident and didn’t handle it well in 2024. I had him tested again then and he failed.,
That’s when I hired a caregiver to help with him and drive him to the gym etc.
By 2025 he was more 24/7 care.
His sleep disturbance got worse and he began threatening me in the middle of the night.
I got no sleep for the last few years.,
We had 2 neuropsychologists and the geriatrician until we finally saw a neurologist in Nov 2025.
She ordered another MRI, Glucose uptake PET SCAN and skin biopsies for Lewey Body dementia.
All showed Alzheimer’s with Frontal Temperal deficiencies and just found out the biopsies were positive for Lewey Body.
It’s been a long haul and now I know the dementia started at least 10 years ago.
We signed up for a CCRC knowing he may need Memory Care and so it is that he is now there in Memory Care. I move in to our Independent Living Apartment in August.
We are a love story with ups and downs but years of travel and joy. Now we are both adapting to a new life.
I’m not focusing on stages. I try to stay present, visit daily and enjoy what moments we have.
He is getting all the therapies they offer and personal training and getting good and safe care.
And finally I am sleeping but still very much there for him and so are our children and grandchildren.
This is a journey I never thought we would be taking. Our world travels are over but we are still traveling this journey together with an uncertain future and I don’t want to look.

@maryvc And by the way, our friends wife now has posterior cortical atrophy and dementia. We are one of each others supports.