Keys Bags Names Words
On April 2, I will be participating in a panel discussion following a screening of the documentary film Keys Bags Names Words. This event will be held at 7 – 9 pm at the Smith Memorial Center Ballroom (room 355) on the Portland State University campus, 1825 SW Broadway, Portland OR. I was able to watch the film a few days ago, and it really resonated with me. As described on the film’s website, “different people around the world share how they have adapted to a diagnosis of dementia. In turn, we see how they inspire artists and scientists to develop community-based solutions to foster connection and meaning.” Refreshingly, there is virtually no mention of drugs for Alzheimer’s. In my opinion, we are obsessed with finding a cure for Alzheimer’s, a drug that will be the magic bullet that makes it go away. Billions of dollars have already been spent in that quest. In a cost-effectiveness analysis published online ahead of print in Neurology last week, one of the most promising of these new drugs, lecanemab, was not found to be cost-effective compared to standard of care management unless priced below $5,100 per year. The current price of the drug alone is $26,000, and total annual costs including drug administration costs, required MRI scans and other tests are estimated to be $82,500. In an accompanying editorial, Sarah E. Nelson and Oscar L. Lopez write, “if lecanemab and similar anti-amyloid therapies that have recently become potential options for patients with AD hold any prospect to be used by patients to potentially improve AD management, then these therapies need to be shown to be worth it—financially and otherwise.” Yes, we need to discover effective new drugs to prevent and treat Alzheimer’s disease. But we also need to recognize that evidence-based lifestyle modifications such as exercise, diet, social and intellectual engagement, getting adequate sleep, and managing cardiovascular risk factors such as hypertension, hyperlipidemia, obesity, diabetes, and smoking, combined are likely to prove more effective than any medication yet found for slowing progression and reducing the risk of getting Alzheimer’s.
I have accepted and am learning to live w Alzheimer’s. The worst thing is to give up. Having a sense of humor really helps
Absolutely! I agree with you completely. My malapropisms are a cause for family laughter rather than concern.
I’ve passed on details of your book to the carers at my Dad’s Dementia care home. I’ve been trying to get them to look at the menu for months. Falling on deaf ears I’m afraid but not given up. I’d love to get the film screened over here, but I’ve absolutely no idea how to go about it. I’ve signed up so hopefully someone or something will enlighten me. Keep up the great work
This post really resonates with me. Although my husband has been part of the Eli Lilly trail, we are certain the first 18 months he was on placebo and as we enter into the last 2 months of the extension period we also know he has not been able to receive the drug at full dose or l regularly meaning we have spent closed to 3 years and he has not received the therapeutic dose for allotted time. Nevertheless, I think these past 3 years have been well worth it and have helped us gain a positive and accepting attitude. The monthly check ins with caring neurologist and other health care professionals who are matter of fact and supportive has helped take away our panic or fear, not to mention the stigma. Yet, his decline is considered slow and I attribute that to his lifestyle changes and cognitive reserve. I am also very interested in the effectiveness of his cognitive work with the occupational/ speech therapist. I have to wonder whether some people with this diagnosis, sometimes get psyched out and give up trying to learn new ways of functioning or learning new ways to complete tasks. It is almost a race against time to to keep learning while one still can. I am grateful to the clinicians and people that have helped us keep our sense of humor and be constructive as we move forward. I wish more people believed in these lifestyle habits and we all could be grateful for our aging bodies. Eating a Mediterranean diet, exercising and staying active etc. are sure a lot more pleasurable than having an infusion every month and undergoing a boatload of tests. We seem to be somewhat of an ableist society I suppose. Thank you for all that you do!
A few typos. triall, we are certain the first 18 months he was on placebo and as we enter into the last 2 months of the extension period we also know he has not been able to receive the drug at full dose regularly, meaning we have spent closed to 3 years and he has not received the therapeutic dose for allotted time.
Lilly’s drug donanemab is the most effective anti-amyloid monoclonal antibody yet in removing beta-amyloid from the brain. It slows but does not reverse cognitive impairment. I’m keeping my fingers crossed, not for me but for others with earlier stage AD, that it will be effective when given in the presymptomatic stage of the disease. Trials are underway.