How long do we wait until diagnosis of Mild Cognitive Impairment (MCI) can be changed to dementia?

I am dealing with a similar situation with my Mom. She hasn't really been diagnosed with anything techinically that I know of, but her GP has her on 3 Rxs that are for memory, the last one added being Memantine. We, her family, know something is not right. She had 3 months worth of medicine that she wasn't taking (she likes to hide things for some reason). If you question her or ask her to do something that she doesn't want to do, she gets nasty. While she has good long term memory (remembers her 4 digit pin, things from the past), her short term memory is awful. The constant repeating, asking the same question, lack of personal care, anxiety...all non normal things for my Mom. She has sundowning for sure. It started earlier this year and I thought it was perhaps stress because my Dad got hurt and was in hospital for 3 months. But he is saying it's been happening frequently now. I've taken her to a neurologist who did "tests" (what's todays date, draw a square, write a sentence). He said he didn't see anything even though I had a laundry list of things I was concerned about.
I brought her to another neurologist who suggested she get a neuropsych evaluation. That would better tell them what is going on. She pitched a fit, was angry and nasty to my husband and me and flat out said she will not go to any other doctors than her GP. She's "fine". She's always fine. But she knows she's not because when she catches herself asking the same question for the umpteenth time, she'll say "oh, I was just kidding." I've told my Dad he will need to speak to the GP to tell him what he's seeing, but there really isn't anything more the GP can do. If she doesn't want to go to specialists, I can't physically force her. I'm POA, so I guess I wait until something happens and then I will step in.
Your Mom may need a neuropsych eval. Hopefully, that will give everyone a clearer picture of what is going on. Hope you get some answers, good luck to you.

Perhaps her neurologist should order an M.R.I.

It was very evident that my mother was sundowning long before she entered a memory care unit. She was being assessed by a geriatrician every 6 months, then every 3 months. The specialist only consulted in the morning so she never got to see the change in the afternoons heading into the evening. When mother went into Respite on the very first night the consultant nurse practitioner identified that mother had slipped into dementia. When we told the original geriatrician she said she had never seen the symptoms in our mother so could not make the change in diagnosis from mci to dementia. The point of this story is that you should perhaps arrange for testing at a different time of day when you know there is likely to be a different presentation to usual, or get a second opinion.

Read and re-read her Long Term Care policy. They can be tricky. They will send someone out to evaluate her. My mother was uncharacteristically With it that day. She answered every question correctly and quickly. I was so nervous that she would pass that test. Lol. It’s a long test. When they got towards the end, that’s when it became obvious my mom had significant issues.

Dementia has 3 forms: vascular (stroke-induced), Lewy-body (Parkinson's disease), and Alzheimer's. Alzheimer's cover 80% of most dementia seen in USA. Cognitive decline from Alzheimer's has various stages - mild cognitive impairment (client needs "reminders") to final stage (difficulty swallowing and needs al care met by others).

Make a list of impaired thought process "behaviors." Bring these to usual medical health care provider. Ask health care provider what kinds of behavior will LO need to exhibit for diagnosis of "Dementia" or "Alzheimer's".

An MRI might show the abnormal protein accumulation in the brain for Alzheimer's and will definitely show areas where strokes have occurred.

Document her behaviors ,strengths & limitations, and all the things you need to help her with or do for her. Get a second openion. You may also want to explain why her (accurate) diagnosis is important in providing her with a safe place to live. Good luck 🙏

Another practical difference between MCI and dementia... MCI people forget to brush their teeth while dementia people forget _how_ to brush their teeth. A checklist with necessary daily tasks (brush teeth, take morning meds, eat lunch, etc.) can help the person with MCI continue to function fairly well _but_ they need someone providing that structure, along with someone checking on them often and being available as a "help line". I installed a key code entry lock on one of the outside doors at my parents house so Mom could get back in if she forgot her key (or more likely my father locked her out). Mom had to call me every time and ask what the code was. Mom also started labeling left overs with the date she put them in the fridge so she could discard the old food during her weekend fridge clean out.

MCI is not dementia, although 60% of people with MCI will develop dementia at some point, which also means 40% will not develop dementia. The description in your post sounds very much like my mother's MCI with short term memory loss.

The neurologist who evaluated my mother and confirmed the MCI diagnosis told me a major difference between MCI and dementia is the person remains able to learn new things and to make good decisions when all the information is available to them. The bank branch my mother had used for years was closing and Mom decided to open a new account at a different bank with a branch just across the street. She opened the new account and ordered checks, which she received. About 6 weeks later, she stopped at the new bank branch to open a new checking account and was surprised to discover she had already opened an account there. The doctor said this was not an example of dis-orientation or broken thinking. Mom knew where she was and why she was there so her thinking was working, she just didn't remember all the information (she had already opened the account) she needed to make the right decision. Short term memory problems lead to longer term memory problems as short term memory is not stored into long term memories. As a practical matter, Mom might add salt to the green beans a couple of times but she won't be adding sugar because she would continue to know the difference. At the same time, Mom needed some help with bills because she had problems remembering which checking account to use. She would check the register to see if she had paid a bill, but she ended up double paying a few bills with one check from the new active account and one check from the old closed account. Mom didn't have problems keeping her appointments because she continued her lifelong habit of writing all appointments down on a calendar.

Mom with MCI can be reasoned with and can adapt to using memory aids like lists and labels to continue functioning fairly well in a normal setting. She didn't have problems driving and never got lost, but I asked her to stop driving because I was concerned even if someone ran into her, the short term memory problems could make it difficult for her to provide LE with her side of the story. She agreed. Her personality remains intact and she doesn't have the aggressive, angry rants my father with vascular dementia did.

My father with vascular dementia retained most of his memory but lost the ability to think and adapt. I first realized how badly his thinking was compromised when I was helping him install a dishwasher and my father with nearly 50 years of construction experience couldn't adapt the plumbing diagram included in the installation instructions with the kitchen sink's plumbing. Dad once decided the fresh water well needed chlorinating and dumped 20 lbs of pool chlorine with algaecide in without telling anyone. Fortunately Mom smelled the chlorine when running dishwater and neither ended up poisoned. Dad became very unreasonable, very verbally aggressive, emotionally abusive, got lost driving down the dead end one lane street he had lived on for over 70 years and eventually even threw things and pushed my mother. People with dementia need much more supervision than people with MCI because the thinking is broken and their actions are so much more unpredictable.

My mother is now in the severe stage of dementia, has forgotten most of the past, and forgets what was said or happened minutes before. Yet she is still able to say, "I don't remember what happened 5 minutes ago." So no, you don't have to wait until they don't know they aren't remembering things.

Maybe start with new doctors!!. A geriatric doc might be better option. And I feel you have to step in and really explain her behaviors to them. They can only base their assessment on what they see. My mom is in severe dimentia. But when she is at the doctor, she can appear quite different. It's strange. So doc thinks, oh wow, she is doing great!! NOT!! We just went thru this. We asked doctor to help us get hospice palliative care. My mom has no idea where she is, cant bath herself, make a meal, or in any way care for herself. My sister and I do it all for her. But doctor said she appears quite okay and would not write an order. Until she cant walk or eat is.the.drawing line. The truth is, doctors dont know what to do with all the dementia patients. So its put them on Namenda or other meds and move on. It's quite sad there is really no place for them. Best wishes to you. It's a struggle and doesnt get any easier I'm afraid. But a good doctor can make a difference, if you can find one.

Hello. I can only tell you what I went through with my mom. Her doctor diagnosed her with Cognitive Impairment when I wrote to her about moms Memory. She examined her numerous times and said the same thing...CI.
Since I am her POA, I started to take over paying her bills and managing her financial affairs. Set up caregivers and got rid of her car was not something she was agreeable with. She took me off her bank account but I got legal advice and found out that with my Power of Attorney, I could overrule her. I also kept her doctor informed of what was going on. Mom was spending 3-4 thousand dollars a week at the casino!
i had to close her accounts at the casinos, block her from writing checks over a certain dollar amount.
Finally her doctor agreed to having her tested by a Neuropsychologist.
she tested very low. I had all her doctors write a letter stating her diagnosis. Mixed Alzheimer’s !
Now I’m trying to find the Memory Care facility that would treat her with dignity.
My suggestion is to keep documenting behavior, take pictures of living condition at home, bring Adult Protection Agency into the mix for suggestions and their evaluation. This will help with the LTC questions.

Hope this helps!

Eaglet333

Time for a second opinion. Contact other doctors in your area and have her evaluated again. Good luck to you.

I see that you are in the Greater Phoenix area, you are blessed that your area has over 3500 care facilities for seniors needing help.

Can you start the research of what is available, what type of care they offer, if they take insurance etc? This will help you understand what you are looking at for placement and what you think will be a good fit, ie, a small board and care that keeps her from AL thru death, a continuing care facility that has different levels in the same complex, free standing AL, MC, etc. This will help you get educated and help empower you to deal with the doctor and insurance company.

I would guess that your area on aging is the Maricopa County Council of Aging. A Google search will tell. They can help you find the directory of facilities, as well as a senior placement advisor. These people are paid by the facility and don't cost you anything, I highly recommend using several of them, they seem to be associated with certain facilities. Area on Aging can help you get a needs assessment done so you know what level of care she needs to start with.

I really do recommend doing this before you actually need to place her, it is stressful and you need time for you to deal with your emotions of placing her in a facility. Oh yeah, always consider what mom can personally afford when making a choice, insurance policies don't all cover the lifetime. Her money should be saved while insurance is paying to ensure continuing care in a nice facility for her lifetime.

Best of luck, such a difficult time. Hugs!

We actually did the opposite. First doc said Alz and then I finally got my husband to the top docs in Philly and they moved it back to late stage mci. That made it feel less stressful but he is being treated as if he had early dementia. The new doc based his new diagnosis on his high functionality. You can get the diagnosis you need by shopping drs. She certainly sounds like she is in early dementia. Ask the doc why he is suggesting mci ands explain why you need a different diagnosis. Then find another doc if he will not agree. Your Mom is not functional on her own which is usually a dividing line between mci and Alz

Have you spoken with the physicians regarding your concerns? Have you thought about having a geriatric psychiatrist or neuropsychologist evaluate your mom?

Dj, aside from the LT insurance question, are you local to her so you can check to make sure she is remembering to eat? My MIL had short-term memory loss and we only realized she wasn't eating after going to her home and looking in her fridge and garbage...rotting food and nothing in the garbage, no dirty dishes, and she nearly passed out when we were at an event together. I would call her at the end of each day and quiz her on what she ate. She would give me a detailed list. She really thought she had eaten! She was overweight so we couldn't really tell that this was happening. IMO this should definitely trigger the immediate need to get her outside help or into a community. Also make sure her critical bills (like the LT insurance policy) are on autopay and she has the funds to cover it. Good luck!

If your mother’s doctor understands that your mother is functionally impaired and cannot safely live independently and he still doesn’t believe that she has dementia, it’s time for a different doctor. Or, contact your mom’s LTC insurer and ask that they do an assessment. I’d try the different doc though.

another option is for you to write a letter to her doctor and describe her dangerous behaviors and inability to perform the activities of daily living. He will have to make that a part of her medical record and he will then have difficulty squaring it with his diagnosis of MCI.

I don’t know why doctors are so reluctant to call dementia what it is. I think they just don’t want to look patients in the eye and say it. My dad’s GP never diagnosed dementia, just MCI, but on day one of a rehab stay, the Occupational Therapist did.

My dad has dementia and this surely sounds the same. His doctors had him diagnosed with MCI for many years and it was not until he went to a geriatric psychiatrist was he diagnosed with dementia.

Did they say she had Mild Cognitive Impairment or Mild Cognitive Decline? The second is the new term for Dementia and they are frequently confused.

I would talk to the team that gave you the diagnosis and clarify what they think mom's level of care needs are.

Folks with MCI can generally live alone with some support. Folks with MCD need a more supportive envirmne t, like the type that AL would provide.

Explain your dilemma to them and ask what they think the timeline is for her needing AL.

Take videos of her repeating herself over and over. Document everything you see happening. My mom's doctor kept saying she had short term memory loss. My brother got her an appointment with a geriatric doctor and after an evaluation (and knowing she kept canceling her follow up appointments) signed a letter saying she was incompetent. This allowed my dad the right to move them into AL. He wanted and needed to move. Your mother definitely shows signs of dementia. Keep trying new doctors and show documentation of her behavior. Best wishes!

For my mother's long-term care coverage--she had to already be at the facility for 6 months, and then the long-term care insurance company sent their own nurse to do a cognitive evaluation (in addition to me sending them copies of doctor and neurologist reports). The nurse required a family member to be there during the evaluation. The evaluation took about 2 hours, mostly verbal questions, following written and verbal instructions, pencil-and-paper tasks. The company approved the coverage. We pay the facility bill each month (with mom's $$), then the LTC insurance reimburses for a percentage of the monthly bill. They deposit the reimbursement directly into mom's checking account--make sure to ask for a form to sign to allow electronic deposit, if that's what you want. I logged the entire thing--it took 20 hours of phone calls, emails, paperwork, etc., over the course of 6 weeks, to get the coverage started. But I was pleased with how cooperative and helpful the company was. Good luck!

Dementia is a set of symptoms or kind if an umbrella term. She needs a proper diagnosis by a neurophysiologist. 2 or 4 hour testing to determine her strengths and weaknesses. The diagnosis will
determine any recommendations for her care. In FL there are Memory Disorder Clinics that are a great resource and also work with physicians to help the patients and caregivers. They do some of the testing and offer support groups, classes, education, training, and work with the families of Silver Alert people. (Missing in a car). That are nonProfit and partially funded by the state.
Your mom sounds like she may need more testing.

Tell the doctors about the "dementia" requirements on her insurance, and tell them the things that you feel are endangering your Mom. Check the long care insurance policy VERY VERY carefully because often they will not cover a place that doesn't have a full time RN on duty. That, of course is rare as hen's teeth, and more expensive. So take great care in trying to rush any of this along.

Hello dj84259,
I agree with DollyMe. From your description, it sounds like your mother has dementia.
Did you communicate with the doctors the need for a formal diagnosis of dementia/Alz?
If I were in your position, I'd call alz.org and ask for guidance. There has to be a medical professional out there who can help you in getting your mother the care she needs.
I wish you well.
R27

Unfortunately, women's declines are not taken as seriously as men's. Good Old Boy system still prevails today.

I have run into the same thing with my step-mother, I am taking her to Neurologist # 4 on the 9th of December. The other 3 have been complete duds, all they do is say "Let's watch her"... I am... she is losing her mind....

This time I am taking a complete outline on her slippery slide, I am tired of the run around.

Yes, your mother sounds like she has dementia.