My mom has kindly refused formal testing in the past. Yesterday she cooperated and participated in the Mini Mental State Examination test with her doctor. I knew we were probably heading towards severe dementia but was not expecting her to score a 2! I'm struggling with how - and what - to tell her siblings and friends. I've been keeping them updated on her current status, but the doctors wouldn't provide me any guidance on what to expect - and possibly when. I understand each patient is different...but a score of 2! I just need some kind of guidance.

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((((((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!
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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.
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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!
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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
Even though you are living it you may find comfort and inspiration in knowing that others are sharing your journey.
Helpful Answer (7)

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.
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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.
Helpful Answer (5)

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.

So...I hope some of this information helps. Good luck w your mom and take care.
Helpful Answer (5)

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
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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
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jacobsonbob: Your dad sounds like a great guy.
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