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Description

This program is supported by an independent education grant from Lilly. This online education program has been designed for healthcare professionals globally excluding the UK.

Who Should Attend?

This program is designed for healthcare professionals involved in Alzheimer’s disease diagnosis, imaging, treatment, and acute evaluation, including:

  • Neurologists
  • Radiologists and Neuroradiologists
  • Emergency Medicine Physicians
  • Psychiatrists and Geriatric Psychiatrists
  • Primary Care Physicians (MD/DO)
  • Nurse Practitioners and Physician Assistants
  • Infusion Center Staff
  • Nursing Staff
  • Triage Specialists
  • Frontline Clinical Support Teams

Speaker

Rev. Dr. Cynthia Huling Hummel is a Patient Advocate who was diagnosed with Alzheimer's disease in early 2016.

Disclosures

Rev. Dr. Hummel has no financial interests or relationships within the past 24 months with the ineligible companies to disclose.

These disclosures are made in accordance with ACCME standards to ensure transparency and objectivity in continuing education.

AffinityCE staff, MedAll staff, as well as planners and reviewers, have no relevant financial relationships with ineligible companies to disclose.

Participation Costs

There is no cost to participate in this program.

System Requirements

Mobile device (e.g., large-format smart phone; laptop or tablet computer) or desktop computer with a video display of at least 1024 × 768 pixels at 24-bit color depth, capable of connecting to the Internet at broadband or faster speeds, with a current version Internet browser and popular document viewing software (e.g., Microsoft Office, PDF viewer, image viewer) installed. Support for streaming or downloadable audio-visual materials (e.g., streaming MP4, MP3 audio) in hardware and software may be required to view, review, or participate in portions of the program.

Disclaimer

This activity is intended for educational purposes only and does not establish a standard of care or replace clinical judgment. Any therapeutic or diagnostic strategies discussed must be evaluated in the context of each patient’s clinical circumstances, risks, and current evidence.

Learners should consult authoritative clinical guidelines and approved product information when considering treatment decisions.

All materials are used with permission. The views expressed are those of the faculty and do not necessarily reflect those of the accredited providers, MedAll, or any supporters.

Content is accurate as of the date of release.

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Computer generated transcript

Warning!
The following transcript was generated automatically from the content and has not been checked or corrected manually.

Cynthia, thank you so much for being here with us today. Your perspective as a patient advocate is invaluable to the clinicians and researchers watching this. Uh, to start us off, I'd like to give you the floor. Could you share a little bit of your journey with Alzheimer's disease with us? Oh yes, Gabby, it's um an honor for me to be speaking with you today. Um, I first started noticing symptoms when I was 49 years old. Um, I was very active as a, a pastor in a congregation in upstate New York, and I started forgetting things, my parishioners' names, meetings, um, I was having trouble, um, uh, with, with cognitive symptoms, and I started going Uh, to seek answers, going from doctor to doctor, because I was so young, many of them, um, never considered the possibility of a cognitive order like disorder like Alzheimer's disease. It took me, um, 8 years to get my diagnosis of amnestic mild cognitive impairment due to Alzheimer's disease. My mother died with Alzheimer's disease. Her only brother. died with Alzheimer's disease and my maternal grandmother had some sort of dementia. So it wasn't a surprise, but it was a sadness and I had to leave ministry because I wasn't able to do some of the important things that were uh part of my, my, my work. And so, um, I became very active as an advocate and started uh working with the Alzheimer's Association. And looked for opportunities to share my story and help further um the knowledge of people with, um, like myself who were in the earlier stages. So, um, again, um, I'm happy to be here to share my experiences that hopefully others might be able to benefit from them. Thank you so much for sharing that, Cynthia. It really helps to ground our technical discussion in the real human experience. And I'd like to dive into some specific aspects of your care and how it was communicated to you. Uh, you also mentioned that you're going to be starting a new treatment soon. So start Starting with those early days of planning your treatment, when you were first considering the types of treatments we're discussing in our education today, how is the risk of the side effects explained to you? Uh, did the doctors use medical terms like edema or did they explain what actually, what that would mean for your daily life? Well, thank you for the opportunity to share that experience. It wasn't until very recently that we even had treatments that were approved in the United States, and so, um, right from the get-go, people would say to me, have, are you starting a treatment, you know, um, I read this in the paper. Are you going to be taking this drug? And I've done so much research on my own, um, that I realized, uh, right from the very beginning that I could not, uh, take the, the drugs that, that were first, um, available because I am homozygous AOE4 and everything I read told me about some of the, um, side effects including RA and edema. So I've done a lot of reading, um, about, um, the side effects and I realized because I live alone. Um, I could not take those drugs. It would just be too risky. And so only recently, it looks like there's a, um, a medication, a drug that I can take, and I'll be starting that rantinumab study, um, God willing, um, my, um, intake visit is in February and I'm scheduled for my first infusion, um, in April. So, um, I'm well aware the doctors, you know, of course, have gone over the side effects with me and I, I was aware of the terminology even before we, we met, but many patients need to have that information. Um, so they can determine whether or not they wanna participate. So I really encourage the, the doctors who are thinking about, um, having a treatment for their patients to explain in, in, in, in a very basic way what those definitions mean. I think it's sometimes people who are professional and they, they use the terms in their everyday work, but those of us Who are just, um, you know, not in the medical field need more explanation. What does edema mean? What, what does, you know, how can that be put in a, a simple way about brain swelling or brain bleeding or when we talk about aria, you know, so you need to make sure that the patient understands. Um, you might have to explain it two or three times in, in different ways based on their education and based on their knowledge because they need to have that information to make a decision on whether or not to go into the treatment. Those are very valuable insights. Thank you for also mentioning all the research you've done on your own. And thinking about that transition from the doctor's office to your daily life, how critical it is, especially when it comes to monitoring how you feel between clinic visits. Um, when you are asked to look out for symptoms between infusions, do you and did you feel confident you knew the difference between what is considered a normal headache, what is an arrhea headache? What would have helped you to feel more prepared? I feel pretty gosh darn prepared. I, I have the consent form. I've read it through numerous times. I've looked up things. I, I really feel like, um, You know, I, I'm prepared for those um possible um symptoms, for example, the headache, you know, um, I mean, most of us have a headache and we go and we take a, um, you know, a medication, Tylenol or something over the counter, um, but, um, you know, a, a headache that's more severe, um, you want to make sure that you notify, uh, that I notify the team right away and seek, uh, their advice on what I should do next. And so I think the communication has to always be open and there's gotta be a trust. I trust this team. I've been working um with the, the, the doctor, the principal investigator for so many years. I, I just trust his judgment and know that he's thinking about what's best for me and so, but we've gotta make sure that there's that, that trust between the, the patient and the, the, um, the research team. And so, again, whatever you can do to, in to build that confidence, then you'll have a more honest assessment of, of how that's, that particular medication's working for that patient cause you want them to alert you if there's symptoms, not to, it's nothing, you know, it's just a, a little headache. Well, maybe it's something more and it needs to be investigated. Thank you. You also spoke about your life at home and it's interesting to hear how you navigate those feelings at home, in your personal space. Uh, sometimes the clinical protocols require a change in plan based on what the doctors see on your scans. Regardless of what you're feeling. So if your doctor told you treatment had to be paused because of the spot on an MRI, even if you felt fine, how would that impact your trust in the therapy? Would you be anxious to restart? Would there be any hesitancy because of that? Um, first of all, because of the trust level I have with my doctor, if, um, he said we found this spot, we need to pause. That gives me great confidence that he's looking out for me, um, and I trust that judgment. So that's why it's so important to build that trust, um, and I I'd be anxious to restart if he thought it was, was safe for me, you know, again, if he had any doubt, then that gives me doubt, and I appreciate that because um he's depending on me to um always be honest about what I'm feeling and experiencing so that he can make a better determination like we saw the spot, but doesn't seem to be doing this, and so now, maybe we can restart. You know, but I, they've, you've got to have that um symbiotic, um, communication, you know, where you're going back and forth. Mhm. Trust is clearly the foundation of the relationship, and part of that trust involves knowing you're safe even if you end up in a different care setting like uh an urgent care or the ER. Does your care team provide you with a wallet card or a specific letter to carry to the emergency room? And how empowered do you feel to tell an ER doctor, I'm on an Alzheimer's infusion, please call my neuro neurologist. Oh, absolutely. Um, I think it's so important to have some sort of um card or letter so that if you're in a place where you're feeling Especially anxious or you can't articulate what's going on or somebody else is driving you to an urgent care or emergency center to say um we need to get this, this is so important because the, the treatment, um uh how, how they move forward depends on the knowledge of what you're already Um, on and, and you know that it's important that they all communicate with each other, so I'm good with that, um, and I encourage everybody, um, if your study doesn't have, um, you know, that treatment information, um, to get that to your, your Patients, your research participants so that they can share that. Um, I have no problem whenever I go for a visit to a doctor I don't know, I always tell them I'm living with, with amnestic mild cognitive impairment due to Alzheimer's disease, so I want you to write things down. Um, the more we can share and be honest about the current situation as opposed to, well, it's not really important that you, um, no, it really is important and you want everyone to be safe and you