Reality for the deeply forgetful
is a reflection of what the person
living with dementia thinks and believes.
It is that new reality that you must focus on,
not the way YOU think things are, or should be.
Bob DeMarco: Alzheimer’s Reading Room
As readers of these chronicles know, I follow a few other dementia relevant blog sites, and find the Alzheimer’s Association a really good source of information. I also subscribe to the Alzheimer’s Reading Room, which provides up-to-the-minute Alzheimer’s news, and practical ideas for caregivers. The above quotation from Bob Marco caught my eye today, and is a great reminder for caregivers, but also we the volunteers and staff at Memory Matters. As our Memory Care Specialist Cathee once said to me a long time ago when speaking about dementia sufferers: “we live in their world”!
In addition to the very helpful Alzheimer’s Association of America I list the blog sites I’m currently following at the end of my own blog page. One you might find interesting is AlzScience. The lady who writes is a young undergraduate studying neuro science at Ohio State University where ultimately she hopes to achieve a Doctorate. She writes about the potential use of marijuana to treat Alzheimer’s and speaks to encouraging research but concludes :
“Unfortunately, there is simply not enough data yet to determine the safety and effectiveness of marijuana or other cannabinoids to treat Alzheimer’s disease. Based on the promising results that I described, the topic certainly warrants further study. We can only hope that policy-makers will see past their fear of illicit drugs to prevent ovide funding for research into cannabinoids’ effects on the brain”.
I also read daily press alerts concerning dementia and Alzheimer’s in particular. A day ago the major pharmaceutical company Merck announced some disappointing news, reported here by Reuters:
“Merck & Co Inc said on Tuesday it will halt a late-stage trial of an Alzheimer’s drug after it was determined that it had no chance of working, marking the latest in a long line of crushing disappointments in efforts to find an effective treatment for the mind-wasting disease.
The company was testing its drug, verubecestat, in patients with mild to moderate Alzheimer’s disease. But an independent data monitoring committee determined that there was “virtually no chance of finding a positive clinical effect” and recommended the trial be stopped for futility.
The news sent Merck shares down nearly 2 percent in after hours trading.
Verubecestat belongs to a class of experimental Alzheimer’s drugs called BACE1 inhibitors that target an enzyme involved in the formation of the toxic amyloid protein that turns into plaques in the brains of Alzheimer’s patients.
Several companies are pinning hopes on Alzheimer’s treatments using the BASE inhibitor mechanism, including Eli Lilly and Co, Biogen and Novartis in collaboration with Amgen Inc.
Lilly previously endured multiple failures with its solanezumab, which also targets beta amyloid, but in a different way. In the most recent setback, Lilly said that drug failed to slow declines in mental capacity of patients with even mild symptoms.
Researchers are increasingly focusing on attacking the disease earlier as it appears likely that once symptoms have taken hold current approaches fail to work.
Merck said another study of its drug in patients with prodromal, or very early, Alzheimer’s disease would continue with results expected by February 2019.
Patients with prodromal Alzheimer’s disease have objective memory problems but relatively normal functioning in activities of daily living.
Blinded clinical trials use independent monitors to watch for any unexpected safety problems that may crop up. They can also recommend stopping a study early if it becomes clear that a drug is going to fail or if the data looks so compelling that it believes the treatment should be offered to those getting a placebo or other standard treatments”.
Here lies another reality. There is still insufficient funding being given to find a cure, as witnessed by the recent PBS documentary (Every Minute Counts) I refered to a few weeks ago. Until we unleash the appropriate funding for research and, concurrently, open the our minds to the use of drugs such as marijuana, we must focus our efforts on the world we know. The reality world of the dementia sufferers.
I do not know how many dementia day care centers there are in America, nor how much attention is given to the need for Memory Care Resource facilities (such as Memory Matters) but it’s clearly not enough. As our Memory Care Specialist, Patrick remarked recently, “even the PBS documentary failed to talk about daycare and support services such as ours”!
So here in the Low Country we will continue to offer every possible memory care service including, but not limited to, daycare services and personal counseling and support groups for the relatives of the dementia sufferers.
Today was another exciting day for the Compass Club led by a Melissa and Pat. By the way, we recently renamed our social daycare program the “Compass Club” where we strive to help our members find their direction in the reality world in which they live.
We will continue to bring memory exercise, socialization and pure joy to our Compass Club Members. Every day is a new day and different from the last, although some things like The Memory Matters Minstrels is enduring! Today was Valentines Day so we themed the day accordingly and your correspondent was amazed at the amount of trivia questions we were able to pull together. Bob told us some good jokes and riddles and dealt with the days “news” while his partner delivered some amusing “great truths” known to children and adults. The Club Members sang some romantic melodies before exercising and dancing.
After lunch we played some bingo and enjoyed a visit from the lovely therapy dogs before actively engaging in a Valentines Day trivia competition.
After most of the Club Members had left to go home some stayed behind with their caregivers to enjoy a specially themed family evening. Suffice to say the reality world was a relaxed and happy one.
“You know you’re in love when you can’t fall asleep because reality is finally better than your dreams.”
― Dr. Seuss
Please share this if you believe it would help someone. Call 1 843 842 6688 Memory Matters office for more information. It’s always confidential.