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.
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.
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!