Does it really matter what we call it??

RetiredTeacher

My DH has hadcognitive issues for many years. I noticed it when I retired 12 yrs ago. Executive function deficits, no initiative. Withdrawn, apathy. He was in denial. 6 yrs ago physical problems manifested. Sitting most of day, extreme chronic constipation, balance issues, autonomic dysfunction, nightly sleep problems. Chased a diagnosis for a yr and only found MCI and evidence of old stoike in parietal lobe. Fast forward 4 yrs: atherosclerosis, abdominal aortic aneurysms 3, endovascular repair,, 2 more strokes, carotid endartectom., ... eval showed possible early VD. Shuffling gait, SLOW processing, balance issues, increased cognitive decline, shadowing, not sleeping, cant do much on hos own. Still able to dress, toilet and feed himself. Does it realy matter what they call it??? Seems more like vascular parkisonism and VD. End result is the same. He doesn't want more medical intervention. Becoming so much oregon dependent. I have 4 hrs respite once a week that he hates but I need. Does the diagnosis really matter if the decline is real and irreversible,? I slent a long time looking for an answer but not sure a diagnosis is really that important now. Trying to make sense if the dementia world....I know that's impossible. Just needed to share with those who understand.

Care4Hubs

I actually found that a diagnosis helped me. Four years ago, our doctor at the time said what my DH had was “normal age-related.” Right. Finally diagnosed with MCI. After I continued to tell the doctor what I was seeing, he said he thinks he has Alzheimer’s (within months). My DH refused extensive testing. We moved. Fast forward three years. Last December DH finally went for extensive testing. Diagnosis was mild Alzheimer’s with a vascular component. His short-term memory is bad. Although, he now doesn’t remember being diagnosed with Alzheimer’s, which is more long-term to me.. But the diagnosis really helped me be more tolerant since I knew what I am dealing with and I know what to expect. Life is not easy….

Quilting brings calm

no it doesn’t matter to most people. Except that certain meds work best for one type and not so well for others. Certain types progress more rapidly than others

dayn2nite2

I think unless you are trying to get long-term care insurance activated or disability insurance, the actual diagnosis isn't that important. It's more important to understand that and operate under the assumption that they cannot make complex life, medical or financial decisions any longer and the burden is on you to do those things in the best interest of the patient.

PKidd

Dear Retired Teacher, I understand! I tried for several years to get a diagnosis. Some kind of "ok we finally see what you see". When they finally diagnosed my DH, I fell into a sadness so deep I wasn't sure I would make it out, even though I knew! I have been taking care of people with dementia for decades but this is HEARTBREAK! This amazing man, musician, song writer, brilliant guitarist, full of life and love, he changed my life and now this is being taken away from him, from me, our family and friends. Everyone who loves him.

Does the diagnosis matter? For me it mattered for a minute and now it doesn't. We are just getting through each day and I'm trying to make the most of him still being here, even though HE really isn't anymore.

We are all on our own journey, separate but together. I am grateful for this group. I am sending you my very best wishes and a very big hug! Keep your chin up.

trottingalong

A diagnosis doesn’t matter to me. I know what I see and deal with daily. 7 years ago he went through a battery of tests and it was the standard MCI with possible Alzheimer’s with depression. He said he will never go through that again, and I don’t blame him. I helped care for his mother with dementia and see so many similarities. I try and take things one day at a time.

jfkoc

You want to have the most correct diagnosis possible in order for the most effective treatment. That is important.

Once you have that you move on to non-pharmicutical (sp) treatment which has been shown to be almost as effective as drugs.

Iris L.

https://alzconnected.org/discussion/69897/does-it-really-matter-what-we-call-it

The presence of anosognosia, which is different from denial, goes along with the other signs of dementia (executive function deficits, no initiative, etc.).

Iris

HollyBerry

I can see both sides. However, I've found it's easier to say "she has Alzheimers" because that's something people recognize and perhaps have a little more empathy. If I had to explain her behavior without that term, it might be more complicated and less effective. I also found that having it right on her medical record, providers were clued in from the start in the ER. A list of symptoms without a single identifying term might have gotten lost.

CindyBum

We got 2 MCI diagnosis and then a rapidly progressing type of dementia diagnosis. My DW doesn't want to sit for any other tests or get a pet scan or any of that. I don't blame her, as the end result will be the same regardless. To us, it doesn't matter. As you can see, it does to others. Your call, I say.