I'm still trying to navigate the caregiver situation and need some advice.
I have been operating under the assumption that my Aunt has dementia.
After digging through her Kaiser records, I have discovered that her diagnosis is MCI.
I am rather dumb founded! The behavior I have witnessed for the almost two months I spent in Ca was astounding.
What I witnessed was a sweet woman that couldn't do daily activities. Bills in the trash. Microwave for 20 minutes instead of 2 minutes. Any situation that involved choices was absolutely overwhelming. She couldn't comprehend that the DMV couldn't give her a driver's license because she couldn't pass the vision test . She would only eat if I ate. Then she didn't remember that she ate. The list could go on!
She has been in ALF for 5 months now. In the last 2 weeks her mental status has declined fairly significantly.
I have messaged her Kaiser Doctor, but his responses are vague and of no help.
Although I know the odds that she is ever going to improve are slim, would an actual diagnosis help her? And would it help her family members (yes my family and myself) in the future?
Do I need to push the Kaiser Doctor for a neurologist appointment?
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Could be he's being cautious because he's not sure about my intentions yet. I only became a part of her care in October when my Uncle passed away.
Of course I am doing my best to take care of her from another state, but I can see how someone could take advantage of the situation.
I am POA and have authorized access to her medical records.
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Has she been tested for a UTI? That can often make for a very quick, but treatable, decline.
Maybe some blood work is also in order? Could be a deficiency of some sort accounting for the steep decline?
She did have leukocytes and hemoglobin in her urine, but the culture was negative. Her Doctor did not prescribe antibiotics.
Blood work was done at the same time. Her levels have greatly improved since being in ALF.
I'm kind of at a loss!
When my mom recieved a dx of MCI from her neuropsych team, she and we were told that sometimes this progresses to become dementia and sometimes it stays pretty stable. (This was in 2011). She was told to come back in a year, but that we should call for an earlier appointment if anything changed. Mom made it to the one year mark with no significant changes and then had a stroke which changed things drastically.
My impression is that a lot of doctors these days are dxing MCI when they really mean early dementia.
I would get your aunt a follow-up appointment with a local neurologist and bring the Kaiser paperwork.
Brain function is not a static thing, it should be kept under regular review; and a diagnosis of mild cognitive impairment is not definitive or final. It doesn't dictate what support is best for your aunt.
Your aunt's care plan should be based on a comprehensive assessment of her condition and her needs, and the assessment should be reviewed monthly.* Each review should look at whether the support she is receiving does meet her needs effectively, and is an opportunity to adjust the care plan. Medical investigations and findings are an important part of the assessment, but they're not the whole story - and neither would a neurologist's diagnosis be.
Your aunt is entitled to the same level and quality of medical care as any other person. If she is willing to participate in further testing, and she and you and her doctors think the findings would be helpful in ensuring that she is receiving the best, most appropriate level of support, then yes go right ahead and ask.
Why is the Kaiser doctor being evasive, do you think? Do you have authorised access to your aunt's medical information?
* Monthly is best practice. I happen to know because I did my online training about it the day before yesterday :)