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You've probably noticed a news story or two this week touting the big news that, for the first time in nearly 2 decades, the FDA has approved a new pharmacologic treatment for Alzheimer's Disease, called aducanumab. While this sounds like huge cause for celebration, it is important to know that this does not appear to be the "miracle drug" we have been hoping for. In a nutshell, aducanumab seems to provide a small benefit to a small group of people.
Unlike existing medicines, this treatment is targeted at people with MCI, rather than dementia. (You can see our prior discussion of the difference between MCI and dementia here.) Identifying whether you might be in the subset of people who could see a small benefit from this drug is a time intensive process. In addition, because of the potential for serious side effects (including swelling in the brain), this IV treatment also requires frequent monitoring of the brain through MRI (magnetic resonance imaging) scans in between treatments.
Clearly, there are a lot of factors for you and your doctor to discuss and consider before a determination can be made as to whether or not to pursue this treatment. While you may wish to set up an appointment to start this discussion, you should know that aducanumab is not yet available to pharmacies/infusion centers. This process may take weeks to months. Your local doctor and healthcare facility will be able to provide updates as they learn more and set up their own processes.
In the meantime, read more about the approval of aducanumab and thoughts from Mayo Clinic Alzheimer's Disease experts here.
And remember, you do have the power to stay as independent as possible, for as long as possible, through a focus on healthy brain lifestyle habits such as physical exercise, cognitive exercise, social engagement, nutrition, and compensating for memory loss by using your calendar/planner system. Keep up your work in these areas, and keep the faith that there WILL be more meaningful and widely beneficial treatments some day. I for one, remain hopeful that I will see such a treatment during my career.
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Having a communication/planning/calendar system of any type will help you as a caregiver. You and your partner are traveling the MCI journey and talking/communicating daily helps lower the temperature on the stress, even though your partner may not remember they were stressed! IMO, the HABIT program offered to me and my partner much more than the calendar program. You learn in the two week program how to manage and continously assess your life as a caregiver as well as how to help your partner. HABIT makes you think about today, and help you live a full life, one day at a time. Meeting people who are sharing the MCI, dementia, ALZ, LBD journey with you is a comfort! I
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1 ReactionThat's all well and good, but if it isn't accessible then it's of no use. Nice that it worked for you, but timing, distance, sickness and other things doesn't make it accessible to me, so I had to improvise, and I did. I was a Social Worker for Adult Protective Worker before I retired, so the dynamics have not escaped me, and we've had a wonderful 48 year marriage, with great communication, and we are extremely fortunate, but when it hit us, it became irrelevant. I am working with the local Alzheimer Assoc. and our Area Agency on Aging. Even with the knowledge and experience I have and knowing people who work in those organizations takes on a different meaning when it's personal. I wonder how people cope who are completely unprepared without knowledge and experience. We're doing well considering, but it is not a simple process.
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1 ReactionLizzie - I know you feel like you are in a crazy world, but you, and the other caregivers across the world, who do this every day with limited resources and support, are my heroes. When you said "I wonder how people cope who are completely unprepared without knowledge and experience." The answer is they do the best they can. It just happens that with your determination & experience, your best is a little better, and can help others here on Connect!
Your question made me think of my hours, on phone and in person, coaching friends who live in remote or rural areas, with no experience and no help, of my neighbor caring alone for her husband, with no access to the computer. Or of trying to help people on Connect find resources while living in the midst of the storm. Or of my friends, burying their Dad today after a 7 year journey, hoping they do not feel like they failed by placing him in care this past year.
This is truly one of the most difficult journeys in life, please lean on us while you make it. And please think ahead about your next stops...nothing is worse than ending in the ER in a crisis, and having decisions made by strangers for the 2 of you.
May you have an easy day today. Please feel free to lean on us.
Sue
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1 ReactionWell the very good part is that I do have experience and good contacts. One of my dear friends came on Sunday and she works as a social worker for the Area Agency on Aging, and through her I met two of the trainers of the Savvy Caregiver Program. I'll have a book by the end of the week and I'll take a class in the fall. I always feel like I'm the luckiest person alive. For me there is no down side, just the next step. I still have my wit, and my determination. I do find what I need, but when I was in the throes of the Polymyalgia Rheumatica diagnosis I was being challenged. With my mental clarity returned I can make good decisions. My son just emailed me to let me know that he sent one of the guys from his company to put the finish touches on a steel ramp that they are building for me. I am blessed. We want to stay in our own home as long as possible but it isn't easy by any means. My husband even with his dementia has managed to scrape and paint all of the shutters on the front of the house. We're still able to work together. A couple of weeks ago he made a table for inside our arbor. Ours had rotted out. I found a simple pattern online and bought it for $5. He got the lumber from the barn, and together we figured out how to do it. He would cut the pieces according to the measurement that I gave him. In the end, piece by piece, he was able to construct a nice wooden table. He is very proud of that table, but today he came to me and asked me what "this" is. He was going to the bank and didn't recognize a deposit slip. He still likes to do the banking so he writes checks and shops with cash or a credit card, and a grocery list, and he still feels productive. It takes a lot of caring for the people who we love to do what is right. He helped me through my diagnosis and now it's my turn.
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2 ReactionsWhat a wonderful love story! I am seeing the beginnings of this in my husband, so many of our formerly solo activities are now joint ones.
Saturday we put up a light fixture for our daughter (she has a broken arm) - it took 2 of us, on both sides of the ladder, and twice as long, but it is up and she is thrilled. It was nice for us too...to accomplish it as a team, as we have for 50 years.
Sue
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1 ReactionWell that's us. What we can't accomplish alone we figure out together.