Last week I had dinner with a friend who ended her dementia caregiving journey a year and a half ago. She brought up an experience where out of the blue something triggered an upwelling of intense grief that she could not control. She said she knew it had a name, but couldn’t remember it. Later on I saw it on Facebook in an article from Next Avenue about STUG! I sent the article to her and she affirmed the acronym.
After diagnosis, if it was made relatively early in your journey, you may have many moments when you can almost convince yourself that things are the same as before . . . that life will just continue as it has, uneventful and unchanging. It’s that defense called “denial” that is alive and well for most caregivers. We have hopes and dreams that we don’t want to relinquish. We want to pretend that life is normal.
Periodically I will search the web for newly publicized results of trials and will post them here. So far, no “magic bullets” have been discovered and many scientists are focusing on present healthy populations to see what lifestyle differences may benefit/protect the participants as they age.
It’s a multi-year study so we won’t be hearing what they have learned for a while!
When drug trials are performed, there is a standard protocol and language for how they are to be designed so that the clinicians can be sure that what they are measuring is truly the effect of the drug in question and not any other extraneous data.
A Dublin based United Neurosciences Company has been pursuing a vaccine trial even though some past vaccine trials ended in brain swelling and cancellation. This drug called UB-311 is completing it’s phase 2a Clinical Study. The 2b study for efficacy and then Phase 3 for proper potency will follow if all goes well.
It is thought that the blood-brain barrier becomes more permeable as we age, allowing molecules harmful to neurons to enter the brain, triggering inflammation and cell death. It has long been assumed that dementia was due to the accumulation of beta-amyloid proteins, but numerous studies focusing on beta-amyloid have failed to make headway in the fight to find a cure for dementia. Now focus is being placed on the study of the blood-brain barrier to develop new treatments.
Besides learning how to live in the present, learning how to stop the merry-go-round of negative thinking was the most valuable tool I learned in my years of caregiving. Perhaps you don’t quite understand my meaning. I mean the act of getting mad about something and then playing and re-playing the scenario in your head ad infinitum!
A 5-foot-10-inch, 64-year-old man was admitted for evaluation because of throwing a chair in the dining room of the assisted living dementia facility.
When we talk about dementia today, most of the cases have been identified as Alzheimer’s disease and will occur after age 65 (called late-onset). On April 30th of this year in the issue of Brain (HealthDay News) co-author Dr. Peter Nelson of the University of Kentucky announced a new form of dementia. It affects people above the age of 80, and researchers think it has been around for a long time, probably misdiagnosed as Alzheimer’s disease. Researchers are calling this disease LATE which stands for limbic-predominant age-related TDP-43 encephalopathy.
On September 18th of this year the Alzheimer’s Prevention Initiative’s Generation Program (Novartis & Amgen with the Banner Alzheimer’s Institute) announced that they have stopped the BACE inhibitor drug study because of unexpected drops in memory and thinking of it’s study participants. When the group got word that this negative effect was happening, they looked at the data coming in from various study venues to verify that outcome. Once confirmed, they stopped the study cold.