New FDA-Approved Treatment for Alzheimer's Disease - What Mayo Clinic Experts Say

Jun 15 7:00am | Dr. Anne Shandera-Ochsner, HABIT Midwest Director | @dranneshanderaochsner | Comments (16)

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.

Insidious disease. I have been touched so many times by AZ and even now helping to care for a woman that is a helpless bed patient. She can utter some words and seem to know a few things at times but most of time in her own world. She is one of the fortunate ones that can afford private care and live in her own home even though she is not aware where she is. She is receiving excellent care and like so often with AZ she could live for a good while. She showed signs of dementia over 15 years ago and now has to have every need taken care of. It's been a long road for the family.

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Tell me about the calendar/planner system. I'm on another site, for my own disease, but my husband was recently diagnosed with early alzheimers. I took a brief course to assist him, and we do the physical and cognitive work together, keep our social life active, and eat healthy, but is there a formal calendar/planner system that we should look into? We do write all events down, and keep a calendar, we double check bank receipts, and he shops with money or a credit card rather than a check book, but what other planning tools are available? He uses a shopping list for grocery shopping, and we keep a daily routine. thanks for the information. that was helpful.

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Welcome @quimbie, you and @lizzier may be interested in joining the Caregivers: Dementia group here: https://connect.mayoclinic.org/group/caregivers-dementia/

Your experiences would be most welcome.

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@lizzier

Tell me about the calendar/planner system. I'm on another site, for my own disease, but my husband was recently diagnosed with early alzheimers. I took a brief course to assist him, and we do the physical and cognitive work together, keep our social life active, and eat healthy, but is there a formal calendar/planner system that we should look into? We do write all events down, and keep a calendar, we double check bank receipts, and he shops with money or a credit card rather than a check book, but what other planning tools are available? He uses a shopping list for grocery shopping, and we keep a daily routine. thanks for the information. that was helpful.

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Lizzi, I think you might appreciate this blog post:
Patient Spotlight: How I Use My Calendar to Cope with Memory Issues https://connect.mayoclinic.org/blog/living-with-mild-cognitive-impairment-mci/newsfeed-post/patient-spotlight-how-i-use-my-calendar-to-cope-with-memory-issues/

@debbraw can also offer tips on how she uses a calendar.

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Hi @lizzier I'm glad @colleenyoung pointed you to Virginia Laken's spotlight. I'd like to also share a link to a program at Mayo for Mild Cognitive Impairment called HABIT (Healthy Alternatives to Benefit Independent Thinking):
https://www.mayoclinic.org/departments-centers/psychiatry/services/habit-program
My husband was diagnosed in 2015 and we found the program invaluable. A big cornerstone of it is the use of the HABIT-specific calendar – and part of the program is training on how to use that calendar. I'll also share a quote from Dr. Chandler who directs the HABIT program in Jacksonville. In answer to a question regarding the calendar system, she said
"The calendar we use is only available for those who participate in the HABIT program. Of great importance here, we have found in the past that it isn't having the calendar itself that helps, it is having specific training to support and engage people in using the calendar that helps. You can buy similar, although not exactly the same, calendars or day planners out there on the market. Again, however, it is not just having the calendar, it is getting training in using it that is of most benefit. That being said, writing things down more to help memory is better than trying to remember it on your own, regardless of our specific calendar!"
I hope you can get a chance to check out the program and see if it would be a good fit for your partner. Best of luck…

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Hi Everyone. I haven't responded for a while. I'm new to this site but I got a bit discouraged when I saw the responses about HABIT, and the use of the calendar. I immediately wanted the calendar because it would be a wonderful aid for us as a couple, and then saw that it isn't readily available. I do understand why you have to take the course in order to obtain it. But that doesn't apply for everyone. For instance I signed up for an online course called " Living Well with Chronic Pain". I started the course, and had to be hospitalized and had to disrupt the course because of the follow up care at home. I was able to read the entire book, and put the concepts in place. I was already on a healthy diet, but I added the routine exercise plan in the book. I got other tips that I followed and they were enormously helpful. I was doing exercises that were too extreme. I'd start… hurt myself, recover…return to a plan, hurt myself, etc. But by following the ideas in this wonderful book I have done amazingly well, and my physical condition is much better. I also shared the book with my Rheumy. He knew of some of the authors, and thought it was a great book. The same thing happened when I signed up for a class on caregiving for my husband. Different circumstances, but similar, and I was able to negotiate the materials to get a great plan in place and he's doing amazing well. I went on the site at Mayo and found out that what I gleaned from the materials from the Savvy Caregiver Program were very similar and useful. I wasn't able to finish the course, but the materials were very helpful. I'm certainly an intelligent person. I have a masters degree in Social work, and worked in the field for my entire career. When I found out that I could not purchase a calendar that would be helpful to me it annoyed me. So I'll just design one for myself, but a ready made one would be helpful. It's just me. Not a reflection on Mayo, but I have so much on my plate right now that it would have been a helpful tool. To devise one of my own will take time, and right now, and at age 84, I have been able to get back to doing the crafting that I love, and I don't have a lot time to spare to design a calendar, but I will. Just recently we didn't write something down that would have been helpful with a calendar nearby. It's a smallish thing compared to trying to keep all of the balls in the air, but we need all of the help we can get. At 84 everything is a race to the finish line. ha ha. I'm trying to keep myself as healthy as I can, support my husband, have a little fun, etc., and do the things that I love. I had two sewing rooms upstairs, and I had to figure out how to lighten the load, get all of my stuff downstairs, 'cause I can't do stairs any longer, and sort, donate, gift, and toss. I was diagnosed 5 years ago and all of that stuff was in limbo. I got the job done, and have a nice small area where I can work and I can use other spaces in the house when needed. I never had a health concern in my life, and then I had PMR, GCA, and all that entails. I refuse to give up, but tapering isn't fun. I go between 7 and 8 and I can't seem to lower it. I did the Pfizer vaccine with success. Welcome back to the world! I can now meet friends for lunch and have People who are vaccinated over for lunch, hug old friends, see my kids and grands, and great grands. Life isn't too bad. My son in law is doing splendidly with his esophageal cancer surgery, with no sign of cancer from the pathology tests, going home in 8 days rather than ten from the hospital. But I need/want that calendar to make my life run more smoothly. Like I said…it's just me. As you can see I don't hold back when I reach stumbling blocks. I will figure this out.

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@lizzier

Hi Everyone. I haven't responded for a while. I'm new to this site but I got a bit discouraged when I saw the responses about HABIT, and the use of the calendar. I immediately wanted the calendar because it would be a wonderful aid for us as a couple, and then saw that it isn't readily available. I do understand why you have to take the course in order to obtain it. But that doesn't apply for everyone. For instance I signed up for an online course called " Living Well with Chronic Pain". I started the course, and had to be hospitalized and had to disrupt the course because of the follow up care at home. I was able to read the entire book, and put the concepts in place. I was already on a healthy diet, but I added the routine exercise plan in the book. I got other tips that I followed and they were enormously helpful. I was doing exercises that were too extreme. I'd start… hurt myself, recover…return to a plan, hurt myself, etc. But by following the ideas in this wonderful book I have done amazingly well, and my physical condition is much better. I also shared the book with my Rheumy. He knew of some of the authors, and thought it was a great book. The same thing happened when I signed up for a class on caregiving for my husband. Different circumstances, but similar, and I was able to negotiate the materials to get a great plan in place and he's doing amazing well. I went on the site at Mayo and found out that what I gleaned from the materials from the Savvy Caregiver Program were very similar and useful. I wasn't able to finish the course, but the materials were very helpful. I'm certainly an intelligent person. I have a masters degree in Social work, and worked in the field for my entire career. When I found out that I could not purchase a calendar that would be helpful to me it annoyed me. So I'll just design one for myself, but a ready made one would be helpful. It's just me. Not a reflection on Mayo, but I have so much on my plate right now that it would have been a helpful tool. To devise one of my own will take time, and right now, and at age 84, I have been able to get back to doing the crafting that I love, and I don't have a lot time to spare to design a calendar, but I will. Just recently we didn't write something down that would have been helpful with a calendar nearby. It's a smallish thing compared to trying to keep all of the balls in the air, but we need all of the help we can get. At 84 everything is a race to the finish line. ha ha. I'm trying to keep myself as healthy as I can, support my husband, have a little fun, etc., and do the things that I love. I had two sewing rooms upstairs, and I had to figure out how to lighten the load, get all of my stuff downstairs, 'cause I can't do stairs any longer, and sort, donate, gift, and toss. I was diagnosed 5 years ago and all of that stuff was in limbo. I got the job done, and have a nice small area where I can work and I can use other spaces in the house when needed. I never had a health concern in my life, and then I had PMR, GCA, and all that entails. I refuse to give up, but tapering isn't fun. I go between 7 and 8 and I can't seem to lower it. I did the Pfizer vaccine with success. Welcome back to the world! I can now meet friends for lunch and have People who are vaccinated over for lunch, hug old friends, see my kids and grands, and great grands. Life isn't too bad. My son in law is doing splendidly with his esophageal cancer surgery, with no sign of cancer from the pathology tests, going home in 8 days rather than ten from the hospital. But I need/want that calendar to make my life run more smoothly. Like I said…it's just me. As you can see I don't hold back when I reach stumbling blocks. I will figure this out.

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HI ! I too am frustrated about The Calendar System . Is it possible to just post an educational Training Video on how to do it please ? One can EASILY make do with already produced systems from Franklin Covey..it may not be the right size, but surely with so much NEED that this could done as a SERVICE to those seeking skills from The HABIT PROGRAM and don't have 2 years to wait to get accepted. Please. Thanks

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OK Folks we can do this. I started this so I have to do my part to fix it. This isn't rocket science. I'm 84 y.o. so I don't even know if tomorrow will come, let alone put my name on a 2 year wait list or travel to Rochester or Florida, but I can still drive. Sometime over the next few days I'm going to Staples to buy a regular desk top calendar. They come in all sizes and they run January to December. I'll choose a size that fits my desk and has plenty of white space. In all of the blocks I'll list my medical appts. and hubby's. I'll also list other appts. like the vet appt. for the dog, the day she gets her tick prep, the day the plumber is coming, and car repairs, etc. Like we all do now, and list other dates of importance like the Town Council meetings, etc. So I need one with big blocks. Then I'll want one that has lines underneath or along the side where I can write things in (I'd copyrite this idea, but that also takes time). ha ha. Then on the lines underneath I can keep a running list of things like 1. battery for the generator 2. Make a sign for Gordie 3. Put the Tin kids out (last summer I made two sculpture of tin kids made from old rusty mufflers, colanders, etc. and they sit on an antique trike and an antique handmade wagon). They're sitting in the barn 'cause I keep forgetting to put them out. We brought them in last fall and haven't put them out in the spring, and now it's summer. A little memory issue. 🥰. I'm sure my calendar isn't packaged like the one we all want and can't get, but it will suffice, and I can have it done in a day or two. I'm a glass half full person, so I'm grateful that I discovered that such an item exists, and I can do it myself for about $6. I'll have a section where I can list social events, other commitments. and it will be a month at a glance, which is perfect. A little ingenuity is all it takes. I'll let you know how it turns out.

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Went to Staples. Bought the cheap on sale version of their monthly desk calendar for $3.98. It's big and cheap because it starts in January, and we're halfway through the year, but I wanted to try my idea out. If it works out well I'll get a new one in January. Got home and wrote all appts. that we have for the rest of the year, and wrote small so that I can add appts. as they come up. It doesn't show but when you rip off the paper on the front cover under the calendar there are numerous lines all the way across the bottom. I took a ruler and just followed the lines formed by the blocks, and drew lines all the way down on the whole page so now I have many blocks at the bottom. They could be named, chores, social events, errands, whatever, and then just check them off as completed. I'll get better at this as I go along, but I really like the idea. I didn't need a class, and I came up with a solution that works for me. Everything is on one page, and we'll add to it as necessary. I don'r know if this will work for other people, but it feel like it will work for me. One of those blocks could be for numbers like your electrician, plumber, car repair, dog groomer, furnace guy, etc.whatever. If other come up with idea…please share.

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@lizzier

Went to Staples. Bought the cheap on sale version of their monthly desk calendar for $3.98. It's big and cheap because it starts in January, and we're halfway through the year, but I wanted to try my idea out. If it works out well I'll get a new one in January. Got home and wrote all appts. that we have for the rest of the year, and wrote small so that I can add appts. as they come up. It doesn't show but when you rip off the paper on the front cover under the calendar there are numerous lines all the way across the bottom. I took a ruler and just followed the lines formed by the blocks, and drew lines all the way down on the whole page so now I have many blocks at the bottom. They could be named, chores, social events, errands, whatever, and then just check them off as completed. I'll get better at this as I go along, but I really like the idea. I didn't need a class, and I came up with a solution that works for me. Everything is on one page, and we'll add to it as necessary. I don'r know if this will work for other people, but it feel like it will work for me. One of those blocks could be for numbers like your electrician, plumber, car repair, dog groomer, furnace guy, etc.whatever. If other come up with idea…please share.

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Lizzie!! Way to go. I think discovering your own method also means that it will work well for you. It’s custom made. I appreciate your sharing your approach.

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@colleenyoung

Lizzie!! Way to go. I think discovering your own method also means that it will work well for you. It’s custom made. I appreciate your sharing your approach.

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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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That'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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