Nonprofit Insights with Alzheimer's Association
Sep 23, 2021
Welcome to the final part of our Q & A series featuring different organizations discussing how nonprofits are responding to crises, specifically COVID-19 recovery and addressing inequality, and how you can act now and in the future.
In part three, we speak with Donna McCullough, Chief Field and Development Officer of Alzheimer’s Association, the world’s largest nonprofit funder of Alzheimer’s research.
Q: Tell us about your organization. What is your organization's mission?
A: The Alzheimer’s Association is the leading voluntary health organization in Alzheimer’s disease care, support and research. Founded in 1980 by a group of family caregivers and other individuals from across the U.S., we have grown over the decades to keep pace with growth in the Alzheimer’s crisis. Our mission is to lead the way to end Alzheimer’s and all other dementia -- by accelerating global research, driving risk reduction and early detection, and maximizing quality care and support. Our vision is a world without Alzheimer’s and all other dementia.
No organization does more than the Alzheimer’s Association to provide hope and help for every generation facing Alzheimer’s and all other dementia. We provide services to those affected, partner with care professionals to improve quality, advocate for policy change and scientific funding, and advance research toward prevention, treatment and, ultimately, a cure.
Q: How does your organization define charitable impact?
A: At the Alzheimer’s Association, there is a direct relationship between charitable giving and mission impact. Nearly 100% of our activities are funded by voluntary contributions, with the vast majority coming from individuals and families. Unlike nonprofit organizations such as hospitals and universities, the Association does not have significant sources of revenue like fees for medical services, tuition and the like. Our education programs and support services are provided free of charge. We also do not maintain an endowment because our priority is to end Alzheimer’s and “put ourselves out of business” as quickly as we can.
Q: What barriers has your organization faced in fulfilling your mission during the COVID-19 pandemic?
A: Not being able to meet face to face with other people has definitely been a challenge for us. Perhaps because Alzheimer’s can be a very isolating disease, our constituents thrive on community. And with more than 70 chapters nationwide, we are very committed to being engaged in communities.
We were able to transition most of our education programs, support groups, and galas to a virtual format during the first year of the pandemic, and we found this enabled us to reach many people we could not reach before. We are excited about opportunities to leverage technology to complement what we do on the ground in our communities, but there is no substitute for in-person engagement. Connecting with others who are also facing dementia is both encouraging and empowering, and it also helps reduce the stigma surrounding the disease. Plus, we have heard from our constituents and supporters that they really miss being together! We are committed to a full return to in-person engagement when it’s safe per CDC guidelines while also maintaining the extensive virtual programming we developed during the pandemic.
Q: Now, that we are more than a year into the COVID-19 pandemic, how has your organization evolved?
A: People who are balancing careers with caregiving for children and older relatives really appreciate having the option of virtual programming. This year we offered the annual Alzheimer’s Association International Conference(R) – the world’s largest and most influential gathering of dementia scientists -- as a hybrid event, and it was interesting to see that in-person attendance was higher among men, while virtual attendance was much higher among women.
Q: What do you think will be the biggest area of need as we shift into the recovery phase of the pandemic?
A: Alzheimer’s and other dementia remain our nation’s largest under-recognized public health crisis. The pandemic has shined a spotlight on the critical importance of high-quality long-term care -- especially with a large aging population. For the past several years the Alzheimer’s Association has implemented a nationwide initiative to improve how staff in nursing homes and assisted living communities care for residents living with dementia. The initiative includes our Alzheimer’s and Dementia Care ECHO® Program, which trains staff in long-term care communities in evidence-based best practices. We were so pleased to be able to use our ECHO infrastructure to offer a special topic series on COVID-19 emergency preparedness.
Q: How have donor-advised funds (DAFs) addressed your organization’s needs? To what extent have your donors incorporated DAFs into their giving?
A: We have seen a steady increase in the number of gifts from DAFs, including a 59% increase from Fiscal Year 2020 to Fiscal Year 2021. Some of our supporters use their DAFs to make unrestricted gifts to the Association, while others use their DAFs to designate gifts for specific areas of our mission: from international research grants to local care and support services.
Our supporters inspire others to join them in supporting the Association by using gifts from their DAFs to start Walk to End Alzheimer’s® teams and to fund matching gift challenges.
Q: How have you seen philanthropy change in the past year? How do you see philanthropy changing in the next five years?
A: We see increasing interest among philanthropists in supporting the Alzheimer’s cause. They see the need: Alzheimer’s is the sixth-leading cause of death in the U.S., and one in three older Americans dies with dementia. But increasingly they also see the hope, especially since the FDA’s recent approval of the first treatment to address the underlying biology of Alzheimer’s disease. This approval ushers in a new era in Alzheimer’s treatment and research. History has shown us that approvals of the first drug in a new category will invigorate the field, increase investments in new treatments, and generate greater innovation.
As the greatest wealth transfer in history continues, we see more of our donors actively engaging the next generation of their families in their philanthropic endeavors. And we see more focus on transformational giving. To that end we are working with our donors more holistically, speaking to them about ways they can achieve their personal, financial, and charitable goals.
Q: Is there anything else you would like to tell us about?
A: On behalf of those impacted by Alzheimer’s, the Alzheimer’s Association welcomes the FDA’s accelerated approval of the first drug to address the underlying biology of Alzheimer’s. While not a cure, this treatment could mean more time for individuals with Alzheimer’s to actively participate in daily life, have sustained independence and hold on to memories longer. We are hopeful and this is the beginning — both for this drug and for better treatments for Alzheimer’s. We know this drug will be of great interest to many, but it is not the only important element of Alzheimer’s treatment and care. The Alzheimer’s Association has made it a priority to partner with community members, health care systems, physicians, and the Centers for Medicare and Medicaid Services to promote early and accurate diagnosis and ensure access to appropriate treatment, care management and care planning.
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