Doctor assessment for severe dementia and a MMSE score of 2....what's next?

((((((hugs)))))) That must have been a great shock to you. I think you need further evaluations of various kinds to learn more about your mother's condition and what lies ahead. A geriatric psychiatrist or a neuropsychiatrist could diagnose your mother's illness better than a PCP, and give you a prognosis, and, likely, recommend treatment. I hope she would cooperate with them. My mother, after extensive testing was diagnosed with vascular dementia. She was given meds to help her symptoms, and we had an idea what to expect in the future. There was an awkward window of time while the testing was happening when she did not want family informed that there were any problems. Once we had a firm diagnosis and treatment established, I, as POA, was able to let family know what was happening. If you pursue further testing, I would let family know that her dr has identified some cognitive decline and that further testing is planned. It would be helpful to her to know what is causing the decline, likely some form of dementia, so that she can get whatever treatment is available. Good luck!

What is your mom’s living situation now? Home with help or facility?

Is your question about what to tell people or how fast this will progress or both?

I would tell people exactly as much as you know. It must be obvious to folks that mom has some issues. As my dads dementia got worse I had a bit of a struggle getting other people to not try and correct him, quit playing DONT YOU REMEMBER, or try to convince him of something. 

Those folks who are regularly around people with dementia need to have a basic understanding of the illness. And you certainly can’t have anyone trying to convince mom that she HAS dementia.

I can only speak to my experience with my dad. He always refused any testing. We finally decided it wasn’t worth the battle. His primary doc said he had classic ALZ symptoms. I noticed changes in him about 7 years ago. At first I thought it was just old age but it soon became clear there was more going on. Short term memory was failing, his ability to reason about simple things was reduced. It was so long and gradual.

 Dad went into assisted living just last month and is pretty much just in the moment now. He’s on a small dose of Ativan, there’s been some agitation but he’s usually good natured and easy to divert. But he’s still pretty healthy and agile at 87 yrs old. He keeps the staff on their toes!

MMSE so it was a full Folstein test? A 2 is beyond low. I’d be concerned that it wasn’t administered correctly (like tester stopped mid test) OR your mom cannot do a Folstein due to primary language conflict. Folstein has an inherent bias against those who are multiple language speakers or those who had another language as thier primary or early childhood language as the test is done in English.

My mom had really top notch testing over several years at a Univ Health Science Center with full Gerontology Dept & geriatric psych Dept too. Teaching Hospital situation. Multiple MMSEs done. 1 time was way off due to it not being done bilingual which was done all the other times. The test doesn’t have to be totally done in another language but more the keystone words do.... so like “Here is a “yellow pencil” is said and then “Here is a lapiz Amarillo” or ”Aqui esta un lapiz amarillo” is repeated. Bilingual code-switching just on key words is ok. They can recall just fine in their childhood language but English is a bust. The older my mom got the more her memory was Spanish language oriented & surprisingly some German too as she grew up in a very settled by Germans area. This was a woman who spoke English like 95% of the time & only Spanish when family came over from the old country to visit or she visited them. She was determined via testing and physical notations (the flat footed shuffle) to have overall characteristics of Lewy Body Dementia & it was good to know as some drugs better for a Lewy (excelon) and some psych drugs are to be totally avoided. 
If language issues could be your moms situation, she needs to get it repeated.

Mom has been living in assisted living for a few months now. She is still very friendly and likes to be active with the community. We knew there was dementia with preliminary testing and I have shared details with her siblings as well as how to interact (don't correct, distract, etc.) They have been great visiting her and taking her out for lunch and activities. The low MMSE score has me worried about how quickly we will see things change, so I can prepare them if they walk in and something is very different than their last visit. Mom is only 68 years old and we first noticed cognitive issues 4 years ago when my Dad was battling pancreatic cancer. Her PCP declared it to be depression / anxiety with all that was going on with Dad. Made sense at the time. Dad passed almost 2 years ago and the progression since then has been nothing short of heartbreaking. The doctor that tested her yesterday is a geriatric doctor that works regularly with the AL facility. She recommended no medication at this time due to where she tested.

@igloo572.... I wish it was a bilingual issue to justify retesting. As I mentioned - I knew we were in the severe ballpark but was surprised by the score. After reviewing the questions - I'm actually surprised she scored 2. In interacting with mom daily, I knew she wouldn't know most of the answers. She hasn't driven or cooked in 3+ years and hasn't written in about 2. It's such a baffling disease - I don't get how she can't name 5 animals but can call me daily on her iPhone or listen to music on her own using Alexa. My sister and I assumed we would be in this state of mind for years to come because she is so young, friendly and easy going.

Hmmm.... could she actually be aphasia?
Not dementia but one of the aphasias.

There is a risk of misdiagnosing aphasia as dementia with Folstein. “Is Folstein mini an aphasia test?”, Article, Author:  Vigliecca.  ncbi.nlm.nih.gov. 

I am so sorry your mum has shown such a rapid decline Your profile indicates that your mum has Alz/dementia. She is young for that. The disease progresses at different rates in different people. I don't know that that is predictable. 

The disease will cause symptoms and progress in a way that is unique to her so I wouldn't put too much emphasis on the MMSE. I understand it's devastating, but it doesn't really change anything, I think still you take it one day at a time just as you have been doing since her diagnosis. I think it is natural for people to be shocked at young onset Alzheimer's, it's not as easy to dismiss it as a natural consequence of aging (which it is not, of course) when it happens to anyone so young.

There is a documentary I'd like to share that you may find helpful on TVO (an Ontario public television station) called Much Too Young
tvo.org/video/documentaries/much-too-young-feature-version
Even though you are living it you may find comfort and inspiration in knowing that others are sharing your journey.

Were you there when they administered the test? Is it possible that they were extremely strict with the scoring? Do you know which questions she got right to get the two points? I would think something must be wrong either with the testing or possibly your mom was severely anxious. If they were very rigid about scoring and she was very nervous, then it is possible to get a score that low without you expecting it.

If you knew there was dementia, but didn't think it was severe, I would be concerned about a score that low. To me it would indicate some other underlying issue such as a urinary tract infection, dehydration or severe anxiety/depression. I would not take the doctor's "do nothing" approach at face value. I would ask them to look for an underlying cause, do blood work, a urinalysis and have her see psychiatrist.

You can also print out the test an administer it yourself to see what the issue might be. She might be way more relaxed with you asking her the questions than with a doctor. Just be sure not to help with the answers. This way you get a better idea of what specifically she is having the most trouble with. I have been to the tests with my mom and she always has issues remembering the three words a few minutes later and cannot do the subtraction from 100. She also has trouble with the town and county, but since she doesn't know where the doctor is located and isn't driving, I don't really get bothered by her not getting points for that. She also is never sure what floor we are on, but at the doctor's office we go to, we take an elevator to the 2nd floor, but the elevator is the parking lot, so when you push the button it says 1. If she says either first or second floor, they give it to her.

The Mini is called Mini for a reason - it's not supposed to be definitive, it's like a sort of mental triage. A sort of "do we need to take a closer look at this?" exercise.

And in this case - do we ever! 2? Impressive! But sadly not in a good way.

It's just flitting across my mind that Mohammed Ali, may his memory be for a blessing, scored virtually undetectably on IQ tests (decades before his later difficulties set in). Nothing wrong with his IQ. It was about his absolute lack of interest in, and his opposition to the basis of, the tests.

My mother declined to answer "trivial" questions. I think she might have found some of them an effort, and indeed been unable to answer some. But instead she preferred to reject them altogether.

So how much is won't, how much is can't, how much is just not able or willing to pay attention in the first place, and join any necessary thought processes into a coherent chain?

Given that MW's mother is still socialising so well, and functioning in many ways, although undoubtedly there is something going on it doesn't seem to fit the obvious things that would produce *this* low a score.

I think I'd do two things.
1. Ask what further investigations might be useful.
2. Celebrate how much of life she is clearly continuing to enjoy. You can't have too many friends or too much music :)

Three things.
3. Take deep breaths. This needn't be the end of the world.

Has her hearing been tested recently?

This is 2 out of what? if 2 out of 5 that is one thing but a 2 out of 30 is completely different - where I live it is out of 30 so that would be really bad - can you give more details as many of us live in different areas with different tests

This reminds me of the time I was in either kindergarten or first grade when I was asked "what's wrong with this boy" (whose head was a clock, and I gave the correct answer) and "what's wrong with this tea kettle" (I had never seen a tea kettle or even knew what it was for, so I had no idea--maybe the spout was upside down?). In this sense the second question was "irrelevant" to me, and perhaps this is a problem with some of the tests for dementia. I believe people being tested should be aware of this problem and advised to point this out when a question is irrelevant to them.

When I first looked online at some other those tests I realized that I probably couldn't score well on them. Spell a word backwards? Uh-uh. Remember three words I've only heard once when I'm under stress? Dream on. The date? Well I think it's Friday, just wait while I check my computer. Number patterns... never could, never will.

We definitely need to remember what other posters have pointed out, the MMSE and others like it are only the first step, not a diagnosis.

It's a screening instrument. It tells you if you need further evaluation.

Ask the doctor for a detailed breakdown of what she couldn't do.

Velvet, face, daisy.

Oo.

Theatre? Cinema?

But it was eight hours ago that I read the list! How long before it's okay to forget what the words were? :/

These tests are notoriously unreliable and further testing can only give a true picture. The low score and her ability to interact socially seem tb be counterintuitive.
As others have suggested there is no actual way of making a prognosis for any dementia. However getting a definite diagnosis will make getting any treatment possible.
I think the idea of doing the test yourself under calm conditions would also be a good idea. At least it would give you a better idea of what is going on.
I used to administer this to people for applications for Long Term care Insurance. Most people scored well enough on the tests and when there was a failure it was very bad. I remember two, one was an elderly lady who without the testing clearly was not competent although her son was furious when her application was refused. The other was a man who when asked to read something totally lost his temper and ordered me out of the house. I think he was illiterate. Another was a man who admitted that he could not read or write. That was fine because I was allowed to read the questions to him.
Enjoy the time you have left with your Mom and let the "what ifs" take care of themselves.

My mom "failed" her mini-test. She later said she "obviously" doesn't have dementia because an MRI did not disclose ALZ. This is a woman who is a Ph.D. in a medically-related area. When I suggested that there were other reasons that she might be experiencing cognitive issues as shown on the test, she said that "she really didn't try" because they were "stupid questions." Countrymouse's post reminded me of that. Of course that was just an excuse. A year later things are only getting worse but she is refusing to talk to a specialist...

Hopefully your Mom will agree to a more thorough exam to determine her status more clearly.

Oskgirl the only real way to diagnose ALZ is at post mortar. So maybe Mom will have to wait for that. Older peoples brains do show some change on MRI as the brain shrinks. The radiologist told me that if I was 40 he would diagnose MS based on the scan but as I was 78 it was age related changes.

jacobsonbob, my son was in kindergarten or first grade when a speech therapist was testing him. She just wanted to hear him pronounce various sounds. She showed him pictures and he told her what it was. He's smart and very articulate so the test was going along quickly. Then she showed a picture of cooked strips of bacon. He had no idea what that was. He didn't say "meat" or "food" or "breakfast" -- nothing. She looked at me. I shrugged. He's never seen that before. The same was true of a picture of a man's suit lapel. If your Dad only wears turtlenecks, how are you supposed to know what a lapel is? It made me think how much cultural background can make a difference in test results!

My husband's MMSE score bounced all over the place. He was in a study, so he took it at least once a year. I don't think it was ever 2, but it went from the teens to 28. He had Lewy Body Dementia. It is characteristic of that disease to have fluctuating cognition. The varying scores were just evidence they had the diagnosis right! A score much lower than last year did not mean he was much worse than last year -- discussion of symptoms was more useful as a measure -- it just meant he tested at a low point in his up-and-down cognition.

It sounds like your mom is doing reasonably well in her interactions with visitors. If she isn't drastically worse than she has been recently, I'd not be overly worried about the test score.

(My mother could pass all kinds of tests, well into her dementia. The tests just give clues, not a diagnosis.)

The part of the test I like best is asking them to draw the clock. That tells a huge story based on the outcome. I’m curious in the years to come how they will test the techies when they get old as none of them wear a watch! LOL

I agree with many here, it's not necessarily productive to focus a lot on the score of 2/30. It's possible she was mis-scored, but does it matter?

Instead, it's probably better for you to familiarize yourself (if you haven't done so already) with the way dementia usually progresses, and how most people die of the condition. (Sorry, this is sad to learn about, but it's still worth doing so you'll better understand what to expect.)

People vary and your mother might have a more unusual course (she's already on the young side).

But generally: in the early stage, people have difficulties with things that require more complicated brain processes, like driving, finances, judgment, organizing meals or trips, learning something new, making complicated decisions. They also often have difficulty with short-term memory. They may have difficulty saying certain things, or with visual-spatial processing. They usually are able walk and talk, although what they say doesn't always make sense.

In the middle stages, people start to lose their abilities to manage basic skills like continence, getting dressed, and they have more difficulties with walking. Also the type of mental processing activities they can do becomes more and more limited.

As they go from middle stage to late, they lose the ability to walk and make sentences and manage continence. They recognize even familiar people less and less, and eventually they forget how to put the fork or spoon in their mouth, so they have to be hand-fed. Eventually they lose the ability to sit up without support. As a geriatrician this is what I consider "severe/late-stage," but I have noticed that many people -- including many doctors -- will label someone severe just because their thinking and memory are very scrambled, even if they still are able to manage walking and talking.

If you google for the FAST stages of Alzheimer's, you will probably find this laid out. How long it takes for people to go through the stages is quite variable.

People will score very low on the mini-mental well before they reach late-stage, because to do those cognitive tests, you need to be able to understand the instructions, remember things, speak, and draw/write.

If your mom can call you on her iPhone and manage other tasks, she doesn't sound that severe to me. In terms of what to tell your friends and family, maybe focus on what she's able to do now and what she has trouble with.

Medical complications related to dementia are possible at any stage, but become most common when people are bedbound and have lost most of their mental abilities. In very advanced dementia people have basically lost all their mental abilities, but their bodies are well enough to keep living. Again, how long people last in this stage varies; some people live this way for a few years.

But that only lasts so long, and eventually people will start showing signs of illness related to end-stage dementia. These include repeated pneumonias (which may be related to swallowing difficulties), other recurrent infections, pressure sores that don't heal, weight loss, or fevers. A study found that when people with advanced dementia develop those signs, they had a 40-50% chance of dying within 6 months.
nejm.org/doi/full/10.1056/NEJMoa0902234#t=article

So...I hope some of this information helps. Good luck w your mom and take care.

Some years ago my parents were given such tests, and my father tended to respond sarcastically to some of the questions (such as those having political implications) although I knew that he actually knew the correct answers. The person giving the test warned that if such answers are given, they will be considered incorrect.

jacobsonbob: Your dad sounds like a great guy.

Several years ago I took an elderly but feisty woman for dementia testing - they asked what the date was & M said "I'm nearly blind so I can read the paper, I live in a retirement home where there are all sorts of hoopalah made for any holiday so then I know, I can't see nor read a calendar, every day is the same so I have stopped caring if it is Easter Sunday or Ash Wednesday because someone will let me know" - one of the best answers I ever heard but one I keep in mind when testing is mentioned because many don't give a damn what day it is because the real answer is TODAY

Drkernisan - I don’t know how to thank you for taking the time to reply with such valuable information. I can only find so much when I google. What a horrible disease but your reply helped me formulate what to share with our family and LOs. And certainly repriortized me focus on the good vs the inevitable bad that’s down the road. I’m so thankful I found this community

Moecam- the test was 2/30
After reviewing the test, I’m not surprised as I know she wouldn’t be able to answer / complete with answers

Myworld2017, I had a similar experience with my LO. Even upon her first visit to the doctor due to dementia symptoms (She had been running her own household), she scored VERY low on the mini exam. The only things she knew were that we were in a doctor's office and the name of the President. She had no clue of even what season it was, was year, her date of birth, her high school, and couldn't remember what she was told after 5 seconds. She was diagnosed with significant dementia that day(Vascular Dementia). Not long after that, she scored even lower with the neurologists, since she was not able to answer any questions. But, it's been 4 years. Only recently, has she not been able to sit upright in her wheelchair. All I can say is that it's very difficult to predict progression, but, it appears that you have a lot of information provided to explore. I hope it helps.

One more cute story. My friend that I take care got tired of everyone asking him what day or year it was, so one day he asked me, ‘Can I answer them with ‘ Based on the advice of my attorney, I don’t have to answer your questions’. Of course he would forget to say it to them the next time!

What struck me is the idea that you could have been surprised at her low score because you have become very skilled at understanding and communicating with her. That's a blessing for her and speaks well of you.

That said the instrument is designed as a screening tool, and her low score suggests further evaluation is warranted. As other posters,have pointed out, too, the human mind is tough to quantify in any meaningful way, cognition is changeable, and the subjects attitude and interest in the testing process make a difference. More evaluation sounds like a good idea.