Experience with rapidly progressing dementia?

Posted by suesearing @suesearing, Apr 2 10:15pm

I've been on this forum for a couple of years because my spouse has Mild Cognitive Impairment. We went through the Mayo HABIT program, and we are managing fairly well. Her cognitive decline has been very slow and we've been able to keep pace with small changes to our routines and lifestyle.

However, now her brother is going through major, rapid changes in his cognition. His case is complex. He's on the autism spectrum (very intelligent and high functioning) and is prone to bouts of chronic catatonic depresssion, starting about a decade ago. (He's in his mid-70s now.) Six weeks ago he was admitted to the hospital after falling and badly cutting open his scalp. In the ER they discovered that he was malnourished and dehydrated, presumably as a result of cycling down into depression again; not eating has been a hallmark of his previous depressive episodes. He hasn't responded to drug treatment and they are reluctant to try ECT on him again, since it was discontinued the last time he was hospitalized because of cognitive side effects.

The psychiatrist has concluded that his underlying issue is Rapidly Progressing Dementia. His cognitive scores now remain well above average in areas he has always excelled in (reading comprehension, general factual knowledge) but very low in other areas. He seems to have some motor problems now and has great difficulty communicating and getting words out. Yet the doctor told us there is nothing unusual in his brain scans. The change in him over just a few weeks is quite astonishing and sad, and it's so unlike what my wife has experienced that we're just dumbfounded.

I've been doing a bit of reading on Rapidly Progressing Dementia. I understand that sometimes there are identifable causes and it can be reversed or lessened with treatment, but other times there is no explanation and it leads to incapacitation and death in a matter of a few years or even just months. I would love to connect with anyone who has dealt with someone who acquired this condition. My spouse and I are his only close relatives, and because of her MCI, the responsibility for advocating for him, finding an affordable memory care or assisted living community for him, and trying to make sense of it all and plan for his future falls to me. Any information at all based on your experience or reading would be useful.

Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.

bayviewgal | @bayviewgal | Apr 5 11:48am

@suesearing the only part of our experience that I can share about my hubby's dementia is his progressive aphasia. Up until about 5 months ago understanding what he is trying to say was easier. But now it's getting worse at times. We are both using more gestures and alot of times we just can't seem to connect. I will give him my undivided attention when he's really trying to say something like describing something or just wanting to talk about anything but its very hard. When I just don't understand, i just tell him so, and he'll say "thats okay" and we just move on. This journey sure has robbed everyone involved of a lot of memories to share or to make and it saddens me all the time because he was such an energetic and outgoing person... but we make the best of the cards we have been dealt.
I wish you strength, peace and love and hope you can find the answers you're looking for. And this is the place for your questions and advice. Wish I could have been more help

Colleen Young, Connect Director | @colleenyoung | Apr 10 2:13pm

@suesearing, checking in. Any update on your brother-in-law? How is your partner accepting and understanding these rapid changes in her brother? Is it affecting her health? And most of all, how are YOU doing?

robertwills | @robertwills | Apr 10 2:53pm

I have had an extraordinary and awful experience with what was originally thought to be advanced dementia of a loved one. They went from almost normal to almost mental and physically incapacitated within three weeks. All the doctors (their geriatric doctor and emergency room doctors) said their condition was "accelerated dementia". It was a major shock to my family and the situation certainly looked very bleak. It turned out though that it wasn't accelerated dementia. That was not surprising since accelerated dementia is not very common at al!

We don't know exactly what happened but as soon as soon as they were on an antipsychotic medication and got to a professional care environment they were no longer totally mentally and physically incapacitated. Let's say they were at 90%, then went to 15% over three weeks, then went back up to 75% after receiving the medication. That was a huge difference. Now they could talk to us intelligibly and do things like get in and out of bed without assistance. They do have some dementia but I believe what we original saw was a form of mania brought on by the anesthesia and/or an outpatient operation they had weeks prior. Still, no one knows for sure. The only thing I am certain of is accelerated dementia is not all that common. It can happen though. Look it up. Unfortunately the understanding of the brain is still a subject that is vastly unknown. In the future there will no doubt by more accurate diagnoses and effective treatment but until then it can be very difficult for everyone involved.