MRI and early signs

sheila60

Hi, I am new to this board. A few weeks ago my spouse, age 70, had a cognitive workup and an MRI. He wanted this done because on a recent trip he had forgotten/lost some significant items which is not like him at all. I had noticed a change in his frustration level with me and his response to me. He had a cognitive workup 8 years ago following cancer treatments as well. 8 years ago there was nothing notable. This time he scored in normal ranges for his actual memory but scored significantly low on processing. The MRI shows abnormal shrinkage of the hippocampus and parietal lobes. The neurologist said that this is consistent with alzheimers but since his daily life is not being negatively affected and he has the ability to drive, pay bills, shop, etc. without issues, that there is nothing mainstream medicine can do. This cannot be reversed. He suggested that my spouse goes to a alzheimers research group that is part of the same organization. Upon leaving that appt I asked my spouse what he heard the doctor say, and he said "I don't have a diagnosis and it may or may not get worse over time". I asked him if he would follow up on the referral and he will not. He doesn't believe that anything negative is happening to him medically and that he has limited time with his memory. I have researched this and based on the studies and articles that I find, I see that MRI showing this shrinkage is a very early sign of AD, and that in the 7 stage model, he would appear to be in the stage 3, very early, pre-clinical stage of this. He has some very subtle signs of memory loss, processing losses are a bit more, and a slight change in personality but nothing that has caused concern for his safety or ability to manage his life. I sit alone in my concerns as he is not accepting any of this nor does he feel any of it to be a life concern. I would like to be more prepared, know what to expect, start planning ahead and make the most of years that we may have where he is still able to function. If anyone has experience, advise, or resources for me, please share.

Thank you.

jfkoc

Hi Sheila...there are routine steps in the protocol for the diagnosis. The purpose is to rule out treatable causes for what your husband showing. Were they too done?

M1

Hi Sheila and welcome. Certainly, cancer chemotherapy can cause dementia as well. Did the neurologist discuss this, and did the neurologist indicate whether he would be a potential candidate for newer monoclonal antibody therapies (Leqembi, specifically)? To me that would be the major reason to pursue it, as these therapies are most effective when given very, very early, and are more effective in men than in women. I can understand him not wanting to, however. It sounds like he has a pretty clear understanding of what was said. You may want to read about anosognosia: many people with AD cannot appreciate that they have deficits at all (this is quite different from denial).

There may not be much more that you can do, and the fear this strikes into the caregiver spouse's heart is familiar to all of us in a similar position. It is terrifying, and heartbreaking. What you can do is to be sure your legal affairs are in order--you need to hold his power of attorney for finances and healthcare, if this is not already taken care of; and at some point, if he does indeed show signs of progression, you should change your own documents, as he may not be able to function as your POA or executor. That is also heartbreaking, and may be something you decide to do in private without his knowledge (that's what I had to do).

The other thing you an certainly do is plan and execute as much of a bucket list as you can, while he is still functioning well.

ButterflyWings

@sheila60 I am sorry to welcome you to this group. It is the best there is, for experience and freely shared information and best practices to survive the loss of a loved one to dementia. The long goodbye.

I am not surprised, but still devastatingly disappointed that the expert source you are looking to for guidance has SO misled you and your DH with this dangerous misstatement: "...The neurologist said that this is consistent with alzheimers but since his daily life is not being negatively affected and he has the ability to drive, pay bills, shop, etc. without issues, that there is nothing mainstream medicine can do..."

No, there is no cure or magic pill even, but to tell you that "he has the ability to drive, pay bills, shop, etc. without issues" is asking for trouble. Having the appearance of being capable is a false assurance that mainstream medicine knows quite well, is a recipe for disaster with dementia-like symptoms. Others will come along and explain further.

In addition to a cure, we desperately need more clarity, honesty, and urgency from the professionals in making the real risks known and helping put some serious support in place for caregivers and PWDs to not crash and burn due to misinformation and more.

sheila60

https://alzconnected.org/discussion/comment/199625#Comment_199625

Hi, cancer chemotherapy was 10 years ago and the neurologist said that this was not the cause of the symptoms or the brain change in volume. He did say that there were medications that he would be eligible to try if he took the referral to the Alzheimers research group and talked with them. He felt that their protocol would be to re-run some of the cognitive tests using a different level of sensitivity when looking for changes. He also said if they diagnosed him as pre-clinical AD there, he would be given an option of some new medications that are not yet available mainstream.

sheila60

https://alzconnected.org/discussion/comment/199633#Comment_199633

I have worked in medical offices providing behavioral health to medical patients so I do know that physicians are human and often see their role in a certain way. They do not consider the audience and specifically the patient who they are speaking to in the same way as a behavioral health professional does. The minute that he gave us this message I knew that it just reinforced DH perception of being "fine" and not needing anything. ALthough I heard this same message from the perspective of criteria necessary for formal diagnosis and not meeting that criteria (same thing can happen in behavioral health), I am always cognizant of the person I am with and how that message will be read. This message has set the long term stage for increased resistance to ever consider these subtle changes that are happening and the very real objective symptom found on the MRI.

sheila60

https://alzconnected.org/discussion/comment/199624#Comment_199624

He has had the physical exam by PCP which led to the referral to neurologist. Neurologist did blood tests, and MRI plus referred for the cognitive assessment. Cognitive assessment was completed with the results showing a normal verbal intelligence level, verbal memory in normal range and performance / processing ability 40 points less. Knowing psychometry and scores, given my own career field, I know that 40 point difference is worth noting. From there the neurologist suggested he be referred to the alzheimers research group for more tests, a formal diagnosis and experimental treatment. He stated that these were options but only after saying since his daily life is not being negatively affected and he has the ability to drive, pay bills, shop, etc. without issues, that there is nothing mainstream medicine can do. This led to DH not really hearing or caring about anything else.

Iris L.

Despite what the doctor said, DH "not really hearing or caring about anything else" is due to anosognosia. Please read about this, this is not denial. He will probably ALWAYS be this way going forth in the future. Thus it will most likely be up to you to make plans and to ensure safety and to make decisions.

Iris

sheila60

https://alzconnected.org/discussion/comment/199679#Comment_199679

Thank you. I appreciate the insight and direction.