Connecting with the Unsung Heroes of Alzheimer’s Disease

By: Thomas Gibbs, Executive Vice President, Head of Lundbeck U.S

At Lundbeck, we strive to make a difference in the lives of patients and caregivers by working to increase support to affected families and engaging with communities to create broader social acceptance of people living with brain diseases. This November, we are recognizing National Family Caregivers Month and Alzheimer’s Disease Awareness Month. The convergence of these two observances reminds us of the profound personal experiences that bring diseases like Alzheimer’s into focus and the significance of connecting with and supporting family caregivers who make remarkable sacrifices for their loved ones.

This subject is deeply personal to me – my mother lives with advanced-stage Alzheimer's Disease. This disease takes a devastating toll – not only on the person bearing the diagnosis but also on the family members who grapple with the gradual loss of the person they once knew. Most caregivers for people with Alzheimer’s Disease are close relatives who provide care in the home – a demanding and exhausting role that represents a huge emotional and physical burden.¹

I recently had the privilege of having a virtual sit-down with Marvell Adams Jr., the CEO of the Caregiver Action Network, to delve into the unique challenges family members caring for someone with Alzheimer’s Disease face and also bring to light the unwavering dedication of these unsung heroes.*

Tom: Marvell, I appreciate the opportunity to speak with you today. I wanted to talk to you not just as head of Lundbeck in the U.S., but also as a caregiver for my mom, who is living with Alzheimer’s Disease. From your perspective, what are the unique challenges of managing Alzheimer’s Disease as a caregiver?

Marvell: Thank you for having me.

Communication challenges are paramount. If you're a family caregiver, everything that you've built, communication-wise, goes out the window.

And so how do we in very concrete ways, support the caregiver in their ability to communicate what they're trying to convey to their loved one? But even more importantly, how are we supporting that caregiver so they can look and understand verbal and nonverbal cues?

Many times, we understand well that whether it's your mom or anyone living with Alzheimer’s Disease, they are trying to communicate something. Maybe they've lost the ability to communicate in a way that we could easily understand, and so part of our focus at Caregiver Action Network is garnering resources and support so that caregivers can have that complexity of communication made simpler.

Tom: You know, it's an interesting point. I realized that as a caregiver, I started to become frustrated that I was trying to communicate in the same way, but there was not the same sort of receptivity on her end. So that's incredibly important and thank you for sharing that.

From your perspective, how can caregivers cope and find time for self-care?

Marvell: Self-care for caregivers isn't always a natural instinct, and it often comes with feelings of guilt, particularly among the older generations who see duty as paramount. But just like the airplane safety rule of putting on your own mask before helping others, the Caregiver Action Network emphasizes the importance of caregivers taking care of themselves.

From our perspective, we provide support and services that help caregivers identify their needs. It's essential to educate the public that millions of individuals are assisted by caregivers in various ways. Caregiver Action Network offers valuable assistance by helping caregivers cope with their challenges individually and find time for self-care.

We also recognize that caregivers need to connect with each other because caregiving can quickly become an isolating and lonely experience, even though you spend more time with your loved one. As their condition changes, socialization may become challenging.

We're about to launch a digital peer-to-peer network for caregivers, where you can listen to stories, connect with individuals who've walked a similar path, and receive the support you need for your well-being. This network doesn't replace professional help but supplements it, giving caregivers a valuable resource for their own self-care.

Tom: This is excellent.

At Lundbeck, we also talk a lot about agitation that may happen with dementia caused by Alzheimer’s disease. We know that symptoms of agitation are serious and can vary quite a bit, manifesting as verbal aggression, physical aggression, and/or restlessness, which can understandably cause emotional distress for both the person exhibiting agitation and their caregivers. From your perspective, what impact does agitation have on caregivers?

Marvell: When caring for someone with agitation, we at Caregiver Action Network, have experienced that caregivers are more likely to be frustrated, burned out, and have less of a connection with the person they’re caring for.

So, when it comes to agitation, we really like to point to how we can better equip caregivers with the skill set they need to make that communication very strong and understanding that the changing effects of the disease may mean that an approach may work one day and another day it may not. We want caregivers to recognize that because a loved one is upset does not mean you failed. It’s also important that caregivers speak with a doctor about the change in the course of the disease and the treatment options that may be appropriate.

Tom: I’ve heard from caregivers around the country that sometimes there's also a communication gap between the caregiver and the doctor. What are some tips for speaking with a doctor about your loved one’s Alzheimer’s Disease?

Marvell: It's an important aspect because it often requires advocacy in many instances. The reason I say this is that physicians and medical practitioners, rightfully so, are trained and educated with a primary, sometimes sole, focus on the patient, which is entirely appropriate. However, it's crucial to understand that for the care team and the treatments prescribed to be as effective as possible, involving the caregiver's assistance is key.

We advise caregivers to identify themselves as early as possible and recognize that providers may benefit from some education regarding their role. In my view, what may seem like minutia becomes significant. If the caregiver understands the reasons behind medication timing, such as taking it in the morning versus the evening, this knowledge needs to be conveyed from the provider to the caregiver.

I also emphasize that the provider is just one part of the equation. Making yourself known to everyone in the healthcare setting, from the front desk clerk to the nurses and even the housekeeper, is essential. This not only enables you to gain insights from their experiences but also allows you to share information that can strengthen the care provided to your loved one.

Tom: That’s great. Can you talk a little bit more about what Caregiver Action Network is doing to recognize National Family Caregivers Month? 

Marvell: We see an opportunity not only to amplify the message around caregiving but also to recognize the disproportionate prevalence among marginalized communities. Additionally, by collectively amplifying this message, we aim to increase diversity within clinical trials and enhance the education and awareness of individual caregivers, who play a crucial role in accessing support and services. With our National Family Caregivers Month theme of "Caregivers Connect," we look forward not only to the month itself but also to what lies beyond November. Through strong partnerships with organizations like Lundbeck that enables us to increase awareness, expand resource accessibility, and even improve the existing resources available.

Tom: How can caregiver organizations and industry work together to support caregivers?

Marvell: The perspective we hold at Caregiver Action Network always involves recognizing that pharmaceutical companies invest in the research and development of products that can benefit individuals living with dementia or Alzheimer's Disease. This, in turn, equips doctors and healthcare providers with valuable knowledge. Providers can then prescribe these products, which pharmacists can dispense. However, at the end of the day, the link between the actual therapy and the medication reaching the patient's loved one is the caregiver.

Studies consistently show that when caregivers receive comprehensive support, encompassing physical, mental, financial, and emotional needs, they are not only better equipped to care for their loved ones but also experience significantly lower rates of burnout.

Tom: Well, Marvel, thank you. I personally learned a lot from you and it is an absolute privilege to be working with you and your organization as we pursue our purpose.

Marvell: It was a pleasure to be with you today.

*This interview has been edited for clarity and brevity. 

This article is not intended to provide medical advice. Talk to your healthcare provider if you have questions or for more information.

References

1. Alzheimer’s Association. Alzheimer’s Association Report. 2020 Alzheimer's disease facts and figures. Alzheimers Dement 2020; 16 (3): 391–460.

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