Lack of diagnosis, what to do next?

Adult Daughter

I've known my mom was struggling with memory loss for a couple of years. It took me awhile to get the rest of the family to see what was happening, but now we're all on the same page. My mom spends most of her time in deep denial about what is happening, which creates some really difficult and occasionally dangerous situations. I have been trying to get a diagnosis from her family doctor. He has done the SLU Mental Status Exam twice. The first time I wasn't there and she scored 25, mild cognitive decline. The second time I was there when he did the test. He helped her with several questions and said she got the same score. Is that normal? I was shocked that he assisted her with answers and then didn't count her answers as wrong? He was kind to her, but the lack of a diagnosis or even an accurate score is frustrating for me. I don't know if my mom would be willing to see a specialist- some days she would, most days she wouldn't. Is it worth trying to see someone who can give us a better idea of what is happening and where we are on this journey? She has been on Aricept for several months, but I don't think she actually takes it... at least not regularly. She and my dad live alone. He does his best to care for her, but I feel like things are starting to get beyond his abilities. 

I have gotten her to sign a power of medical attorney and I got the doctor to refer us to a palliative care team that will do a home visit and assess the situation. I have no idea when that is going to happen because my mom's inability to use technology has locked us out of her myChart and she's been annoyed by what she sees as my interference lately, so I haven't been able to help her. 

I know a lot of dementia patients never understand what is going on with them, and that's just something we'll have to live with, but it feels like having an actual diagnosis would help me get help for both of my parents. I'd love to get advice from those who have gone before. What should I do next? 

Ed1937

Hello, and welcome to the forum. Sorry you have reason to be here. She really should see a neurologist who sees dementia patients as a large part of his/her practice. They will do a lot of testing to determine if there is a treatable issue causing her problems. If they find something, with treatment it could make the symptoms a thing of the past. The testing should be done ASAP. There are many things that can mimic dementia symptoms, and that is why it should be done.

Have your parents seen a lawyer to protect assets they may have? If not, a CELA (certified elder law attorney) should be consulted before long. They can help with needed legal documents like POAs and other things. They will also tell you how Medicaid works in case it is needed in the future. If there is any question about dementia being in the picture, your father should choose someone other than your mother to be his POA. Your mother could choose him or whoever she wants as her POA, and more than one person can hold POA if wanted.

Iris L.

Adult Daughter wrote:

. My mom spends most of her time in deep denial about what is happening, 

This is anosognosia and is distinct from denial.  She is not aware of her changes, she truly believes she is fine.  You will have to use the work-arounds that the members talk about.

Iris L.

harshedbuzz

Adult Daughter-

Hi and welcome fellow sandwich-filling. I am sorry for your need to be here, but glad you found us.

Some random thoughts-

Assuming your mom's PCP is competent, they probably already ran the blood tests and imaging that would have ruled out other conditions that can mimic dementia in terms of symptoms and behaviors. These would be hormone or vitamin deficiencies or perhaps some sort of brain lesion. 

It is not unusual for a PCP who has a long established relationship with a patient to shy away from a dementia diagnosis. Perhaps because it is a devastating and terminal condition for which they have next-to-nothing they can offer. 

That said, a neurologist or memory center can do a complete workup and could perhaps offer a more definitive diagnosis. This likely wouldn't matter to your mom, but in some instances it can help family members anticipate and prepare for care as well as indicate which medications are safe to try or should be avoided.

A dear friend of mine and I both had a parent with dementia at the same time. Dad had a psychotic episode that led to his diagnosis at a top notch memory center. Dad had a neurologist and a geriatric psychiatrist. Her mom was in her early 90s and was seen and cared for by dad's PCP. We needed the big gun because dad had one of those vitamin deficiencies and his previous docs and ER team missed it. But once the diagnosis was made the memory center brought nothing to the party that made the onerous trip into the big city worthwhile. Their rates of progression were remarkably similar and they died within a year of one another. 

In parsing between MCI and ALZ, often a PWD will showtime (seem more with it than is their normal) for the short time they are in the office) which leads medical professionals to consider them less impaired than they actually are day-to-day. 

SLUMS (and MoCA and MMSE) are screening tools. There are more intensive kinds of testing, but subjecting a PWD to the process may not be appropriate in every case. Dad's neurologist strongly discouraged us from testing. Of the screening tools, I'm told SLUMS is the "hardest" meaning it'll tease out changes earlier than the other two. I can't speak specifically to SLUMS, but MoCA does include a prompt from the examiner if the person can't recall the list of words as part of the test. It's pretty normal to forget one or two words, but most people would recall if prompted with a phrase like "something you write with" for pen. 

That said, I sometimes feel like these quick tests aren't super accurate. I sat in when dad's geripsych gave him a MoCA about 6 months before dad died from complications of ALZ. Dad scored surprisingly well; his score put him in the mild range in contrast with his symptoms and behaviors at home which were stage 6 (severe). One thing dad did struggle with was the word recall-- one of the words was "rose" (his mom's name, btw) and I was shocked when he didn't recall it even with the prompt "a kind of flower" (he said daisy). The doc told dad he did really well and we left. All the way down to the elevator dad bragged about doing so well on his test-- "never have they ever seen someone who did as well as I did". When I turned my back at the valet stand, dad toddled off and got into some little old lady's car. OMG, the look on her face as I ran over to extract him.

Needless to say, I feel like family usually has a better sense of progression than professionals who see them showtiming in the early afternoon before the sundowning starts. 

I would use your medical POA to contact the tech support for MyChart as this is an invaluable tool for making the most of appointments without having to throw mom under the bus with her in the room. It will allow you to present as the ally you are.

Iris is spot-on about anosognosia. It's a double-edged sword. It protects the PWD from the horror of their illness but makes keeping them safe and cared for harder for their families.

HB

Jill N

I could have written this myself in 2018.  It was the most frustrating situation Ive had in my life.  In addition to taking her to her primary multiple times for testing, I took her to urgent care where they gave her CT to rule out stroke.  Again no assistance.  Ultimately we had to march her back to urgent care demand an MRI, and demand a neuro consult.  As others have said its the Neurologist you need.  By the time we got there, she was stage 5 alz needing round the clock supervision, when her primary was calling still her mild cog impaired.  Immediately the neurologist gave us the letter we needed to take control of her medical and financial affairs. You must DEMAND the neuro. appointment.

Wilted Daughter

Hello Adult Daughter,

Arranging for my mom to be tested was a daunting task. I did not know where to begin. ALZ Helpline was very helpful. I do not believe it is normal nor ethical for a provider to help complete the mini cog test. The bigger issue is why a referral was not made to confirm tests.

My mom was extremely combative and switched doctors after the first test and finding of "mild cognitive decline". The second doctor, who seemed reluctant to test cognition, after administering the test, informing of the results then referred mom for more comprehensive testing. That test noted ALZ related dementia...we could have continued on the treadmill of  dementia testing but the 2 tests were conclusive enough to have it noted in her medical chart. Subsequent ER/Hospital visits lead to more tests making it well documented. 

Trying to get it organized initially may seem difficult but there may be 'work arounds' (i.e. healthcare proxy, sharing concerns with PCP or elder services agencies...).  Healthcare proxy forms are easiest to complete, especially if dementia is noted. As the Healthcare proxy you can speak with medical physicians. 

It's a journey and I hope it works out for you in the best/fastest way possible. 

BadMoonRising

Harshedbuzz, kind off-topic, but you mentioned the word "daisy".

Every year I see a neurologist for testing, and she gives me the same version of the MoCA. A few years ago, I sought a second opinion from an expert and actually recited 3 or 4 of the 5 words to the nurse BEFORE she began testing.  Her reply? "Let's try this anyway." What?  Obviously, I only needed to focus on the 1 or 2 words that had escaped my memory since the prior month, when I had seen my regular neurologist. One of the words I had committed to memory was DAISY. This was correct.(I just peeked online to see if rose was in a recent version, but didn't find it. But now that it is on my mind, I'm ready. lol).

Same thing with counting back from 100. I had committed this to long term memory years ago when I had first tested. Don't ask me why, I guess I'm just weird. Regardless, I have since been able to recite it as quickly as someone repeating the alphabet. In other words, there is no subtraction needed.

My regular neurologist said she didn't have an alternate version on hand, but that she would make sure a different version would be available at my next appointment. We'll see.