The Latest in Alzheimer's Research, Care and Advocacy
A Q&A with Joanne Pike, the CEO of the Alzheimer’s Association and vice chair of the World Dementia Council
In June 2024, a new study was published in the medical journal Alzheimer's Research and Therapy that chronicled about 50 people undergoing lifestyle treatment for the diagnosis. The study lasted five months with the goal of helping participants "eat well, move more, stress less and love more."
Between the experimental and control groups, the brain scan results at the close of the study were striking. Small, daily actions, like eating well and exercising regularly, did indeed bear an impact on the severity of an Alzheimer's diagnosis.
These research results may be ground-breaking, but they're just the start, and for some, the result of decades of organizing and effort. Along with recent FDA approvals of medications to slow the progression of Alzheimer's, like Eli Lilly's Kisunla, Alzheimer's advocacy in the form of both policy and continual study to support patients and their families is critical to move the needle on the condition. But moving the needle isn't just finding a cure or a prevention — it's unlocking care support infrastructure for families.
What's more, the gender component of the condition remains a mystery, and one that Joanne Pike, the CEO and president of the Alzheimer's Association, has taken under her wing. Pike spoke with Next Avenue recently. This interview has been edited for clarity and length.
Impact on Caregivers
Next Avenue: Alzheimer's and dementia are illnesses that seem, from our perspective, quite frightening for so many because perfectly independent people become very dependent on others fast. Many don't have the capital or social resources to access consistent, high-quality care. Is that a correct assessment? Is Alzheimer's care, policy and advocacy unique when compared to other medical conditions?
Joanne Pike: I think it's unique because it touches so many from the standpoint of not just who is diagnosed, but the trajectory of dementia and Alzheimer's is such that it impacts so many caregivers around them. The burden is not just for the individual seeking treatment, but the family unit around them as well. All too many people have not planned financially for an Alzheimer's diagnosis.
All too many people have not planned financially for an Alzheimer's diagnosis.
That's one of the most important factors from the standpoint of why we advocate for individuals to receive an early diagnosis: You need to be able to plan and work with a family. The Alzheimer's Association was built on providing care support and information for communities nationwide with education on what this life course [of disease] looks like. [It includes] advocacy, like advocating for policies that support families with social support, [along with] information on what is available in the community and programs funded at the federal level.
Federal advocacy [also includes ensuring that] programs [are] funded to the level they need to be funded for families locally, or for systems in the long-term care industry with guidelines on what care needs to look like, and they are held accountable to those standards. It's incredibly important.
Women Carry the Burden
Two-thirds of women are impacted by Alzheimer's disease when compared with men. Do researchers have any idea why this is yet?
That is an ongoing question. I imagine we will learn some more about gender and Alzheimer's, it's a special focus area for us as an organization. One of the things to think about is that with Alzheimer's and dementia, we know that there could be hormonal or stress-related factors associated with the gender difference from Alzheimer's, but women are more impacted as caregivers as well. Women carry the burden of the disease.
With Alzheimer's and dementia, we know that there could be hormonal or stress-related factors associated with the gender difference from Alzheimer's, but women are more impacted as caregivers as well.
From a diagnosis standpoint, keep in mind that women live longer, so there is an aging factor. But women are also carrying the caregiving burden for someone with Alzheimer's or living with Alzheimer's as well. We call it a women's disease for that unequal burden.
In five to 10 years, where do you think the state of Alzheimer's and dementia care will be in our country?
I think in five to 10 years, we're going to see a significant change from where we are today. Not just treatments, but diagnostics available in health systems nationwide. We will know more about how to reduce risk or prevent dementia, and be able to provide care for individuals in communities to meet their needs and reduce stress on the caregiver, but in a way that looks very different from what we experience today. [I envision that it will be] a system that is integrated with evidence-based care.
Other Advocacy
You're also the CEO of the Alzheimer's Impact Movement (AIM), and the vice chair of the World Dementia Council. Can you break down how the goals of each organization differ, and what your role looks like within them?
Sure. Alzheimer's Association is the single largest nonprofit on Alzheimer's research, care, support and advocacy. But also globally, it's the largest nonprofit funder of Alzheimer's research, and a nonprofit care provider.
AIM is an advocacy affiliate, [and we] use [our] voice to advocate in Congress for the needs of 7 million Americans with Alzheimer's and 11 million caregivers. [We] advocate for legislation, champion, [and] speak on behalf of the Alzheimer's community. [The question is], what can we do with that advocacy lever to influence change?
The World Dementia Council is an organization established in 2013, and focuses on policy making opportunities and recommendations with research from a standpoint [toward] international countries. One of the key things that makes it unique is its focus on the care conversation, but how can we as a global community make policy recommendations on topic areas that are unique to every country?
Every country is dealing with different circumstances for regulatory needs, or cultural needs. [It's] one place to talk about advances, but [also] policy implications and unique situations [the international community is] presented with.