Understanding the Alzheimer’s disease community needs | Eisai US

Discovering the hidden challenges: Understanding the needs of the Alzheimer’s disease community

Article

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Neurology

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May 20, 2024

Teresa Cronin, Vice President, Corporate Communications and Patient Advocacy, Eisai Inc., shares her perspective on the company’s commitment to learning from a diverse group of stakeholders as Eisai works to address the needs of people living with Alzheimer’s disease (AD) and their families.

Why is it important to understand the different needs of people living with AD, specifically in the AD community?

Given the advent of multiple therapeutic approaches to slow the progression of AD, it is important to not only consider the needs of the patient population overall, but also to understand the needs at the individual and community levels. Conditions that affect large patient populations, like AD, may be understood at the macro level, but it is important to recognize that the continuum of care in a community may not be well characterized. Individual patient experience may be influenced by various factors including location (rural, suburban, urban), race, culture, family dynamics, economic status, community support, and access to supportive services.

While there is an important and increasing emphasis on ensuring those disproportionately impacted by a condition are effectively represented in clinical trials, exploration of these individuals’ patient experience and efforts to address challenges they face throughout their disease journey are equally important as we seek to optimize care for AD.

What is Eisai doing to better understand and support people living with AD, care partners and others in the AD community?

Eisai has a long-standing commitment to the AD community, with four decades of research to advance new treatments. During that time, we established relationships with the patient and professional communities, which have informed our understanding of the needs of those affected by or who treat AD. We also collaborate with various stakeholders across the AD continuum to deepen our understanding of the AD experience at the local and regional levels. These collective efforts are rooted in Eisai’s human health care (hhc) mission, where we give first thought to patients and their families to help increase the benefits health care provides.

Understanding the community and the infrastructure that exists enables us to identify potential issues and challenges that people living with AD and advocacy organizations face at the state/local levels when trying to drive change in their community, particularly those that are under resourced or underserved. We also explore best practices and resources that people living with AD and care partners would find most useful along their journey. This approach also enriches our understanding of commonalities and differences that may be translatable or shared. Overall, our objective is to better understand and help to address the unmet needs and gaps in support, education, and resources facing people living with AD and care partners in various regions across the U.S.

Who are some of the AD community members Eisai meets with to better understand their needs?

To best support the needs of people with AD and their care partners, we need to understand the full scope of their experiences. An important step Eisai is taking is engaging with a broad range of local and regional community stakeholders that are instrumental in navigating the individual AD patient experience.

In order to best achieve a 360-degree view, we meet with and bring together stakeholders across the AD continuum including local advocacy chapters, people living with AD/care partners and civic groups chosen based on local relevance and presence in the community. We also seek to understand the state/local policy landscape and the direct impact on healthy aging and the patient community of interest (in this case AD). Participation by representatives from health care provider organizations that engage with the AD community, sheds additional light on key considerations at the local level.

The learnings we gather help inform how we work with communities as we collectively seek to address needs to improve the patient experience. The information will also provide us with a more robust understanding of the AD landscape within specific U.S. regions.

What are some initial learnings you’ve gleaned through your comprehensive approach to engaging key audiences?

Meeting with key stakeholders in the AD community, combined with ongoing conversations with the clinical and advocacy communities, are playing an important role in expanding our understanding of the opportunities and challenges that come with the availability of new treatment approaches for AD. A concern voiced by the AD community is the need for comprehensive support to help people living with AD navigate the disease from start to finish, including what to expect as the disease progresses, what services are available to them, education on treatment options, and potential resources for travel and logistical access issues. Additionally, we’ve learned overcoming stigma associated with AD remains a need, as does ensuring we understand cultural beliefs related to race and ethnicities within the AD community. Overall, these discussions have highlighted the need for continued collaboration to address gaps in education, health system readiness, access to diagnostics, availability of support services, as well as the need for communities to adapt to be more “livable” for individuals with AD.

We look forward to continuing to learn from the AD community so we can support their needs effectively. Putting the patient first and taking the time to learn from them, as well as care partners and advocates, is an essential step to advancing the care our collective health system provides for AD.

For more information about Eisai’s advocacy and patient support efforts, please visit https://us.eisai.com/our-patient-focus.

This article was written by Eisai and hosted on STAT. Here is the link to the sponsored article on STAT: https://www.statnews.com/sponsor/2024/03/04/discovering-the-hidden-challenges-understanding-the-needs-of-the-alzheimers-disease-community/

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