Does Detailed Diagnosis Really Make a Difference?

brupt30

I am struggling with some issues related to my DH, who was diagnosed with "amnestic mild cognitive impairment" late last year (72 years old with a lot of chronic health issues). I don't really have any prognosis beyond this umbrella term, but I'm beginning to think that maybe it's enough for now. His regimen of medications has truly improved his quality of life and eliminated the frequent panic attacks and anxiety that he had been experiencing. He continues to be very articulate and can function on a daily basis, but I truly believe that he is in a more advanced stage of dementia (constantly losing things, frequent repeated questions, no short term memory at all, etc. etc.) but the neurologist has not given much detail. Maybe that's common for a new patient? I set up a long awaited appointment with another neurologist but now I'm having second thoughts because I don't want to disturb the relative calm that he is experiencing now. Each doctor visit is a reminder to him that his cognitive skills are declining and these visits really upset him. I also have him enrolled in a study where they will do a full neuro/psych evaluation, but there is a long waiting list.

I followed advice from this community and got all of our documents in order. Since I think that he most likely does have some form of dementia, I'm beginning to question whether the testing, etc., is more for my benefit than his. I have not read anywhere about an actual cure, and the infusions to prolong things are so fraught with side effects that they don't seem worth it for just a few extra months. Does this sound crazy to just monitor him through the neurologist and work with him as he progresses rather than aggressively pursue a more detailed diagnosis through a lot more testing?

SDianeL

you are correct. I would not subject him to any more tests or change doctors. The infusions are for early onset and have side effects and there is no proof they delay progression. It might prolong progression by a few months at most. Neurologists don’t like to discuss stages. It’s because behaviors can overlap stages or not appear at all within the stage. You can search online for a chart that shows the 7 stages of dementia that lists behaviors to get a general idea of where your DH is. If your DH needs anti-psychotic meds at some point for anxiety and agitation, ask for a referral to a Geriatric Psychiatrist who is best able to manage those meds. Learn all you can about the disease and read the book “The 36 Hour Day” also search for Tam Cummings caregiving videos online. And I would start researching a plan B in case you can no longer care for your DH. Come here often for info and support. 💜

Arrowhead

There are many types of dementia, and each has its own set of symptoms and treatments. While the final outcome cannot be changed, the effects of the journey sometimes can be. Knowing what type he has can lead to treatments that make the journey easier for him and for you.

OzarkMtn

That is almost my story,,, DW 72, same diagnosis, same action,

trottingalong

My husband saw no point in pursuing what we already knew was happening as he advanced more into confusion and short term memory loss, MCI with depression diagnosed probably 10 years ago. He’s following the trajectory of Alzheimer’s. His mother had it, two brothers, grandfather and 3 aunts. At one point he said no more tests, it is what it is. There is no cure, it’s only managing the symptoms. Every time we see a doctor for his COPD it really stresses him.

GenGal

Although I knew from the repeated questions, lack of short term memory etc my Hubby was on the road to memory impairment as so many in his family did, I did not push for a diagnosis for several years. When his behavior progressed we went to a local neurologist who diagnosed him with minimal testing and put him on an oral med to supposedly slow it down. He was on so many meds already for anxiety, depression and PTSD that the side effects are problematic. So am taking him to a geriatrician who I am hoping can manage his meds better and can adjust them as the disease progresses. With older people medications can cause more harm than good.

Lgb35

we are pursuing a more detailed diagnosis only because DH is 61 and still working. I need something more specific for the compassionate allowance for social security disability

cdgbdr

My DH is 72. I believe he actually had an early onset as I look back. He has probable vascular dementia since he has CAD, and also had a significant head injury with PTSD in his 30's and multiple concussions. So, in my mind mixed. No one has dx anything but "moderate" dementia. I found the neurologist unhelpful. At this point, I like to try to understand for my sake, but I don't know if it matters. I agree with seeing a gerontologist. I rely on the geriatric NP for medications for his behaviors and the family practice for all other needs. I did keep the cardiologist on board. We both like him. My approach is strictly palliative now. I find him to be late Stage 5 or just teetering in to Stage 6.