Angela Williams (00:00):

I want to make sure that everyone that's listening understands that Alzheimer's is that great equalizer. However, how a person is able to, deal with it as a patient or to support a loved one as a caregiver differs depending on your socioeconomic status, where, what country you live in, your health insurance, the resources in your community, et cetera.

Introduction (00:31):

Welcome to BrainStorm by UsAgainstAlzheimer's, a patient-centered nonprofit organization. Your host, Meryl Comer, is a co-founder, 24-year caregiver, and Emmy Award-winning journalist, and the author of the New York Times bestseller, Slow Dancing with a Stranger.

Meryl Comer (00:51):

This is Brainstorm, and I'm Meryl Comer. Welcome to this special edition from the 11th annual National Alzheimer's Summit. Our guest today is Angela Williams, past president and CEO of United Way Worldwide, where she led a global network serving 48 million people across 36 countries while privately for many years managing the escalating care needs of both parents. Angela, thank you for joining us.

Angela Williams (01:24):

Thank you, Meryl.

Meryl Comer (01:26):

As a high-profiled woman executive with a stellar career track, when you stepped down, you could have announced, the conventional, "Well, I'm just moving on to my next chapter," right? You didn't do that. You named Caregiving and Grief. Now, why did you decide that honesty, was worth the vulnerability?

Angela Williams (01:51):

, That's a great question. And it's not a solution that I r - arrived to immediately. I wrestled with it. And I wrestled with it because I've been such a private person. I have always been the leader that you never let them see you sweat. You, of course, can never cry in front of anybody. You're supposed to be this strong leader that models, you know, fierceness, courage, bravery, all of those adjectives, right? And, that is the way I've shown up publicly for decades. And I knew it would cause people to say, "What? Wait a second." And, a friend of mine actually said, "You know what, Angela? Now's the time to tell people what's really going on. You've let them in, a little bit here and there, but what the world is looking for now is authenticity. You have a voice, you have a platform, use it." And that's what I did.

Meryl Comer (02:58):

And let's be honest, for years, you were managing both. Were you surprised because, again, we're online and media, everybody's media savvy today. Were you surprised by the range of responses from - Yes. Women in the workforce?

Angela Williams (03:15):

Women in the workforce and men. Everybody began to share their own stories and thanked me for giving them the permission to even talk about it. It, it, with respect to their comments, on my social, they, their names are identified on LinkedIn, and you can read what they said. And so I appreciated that the door has been opened for the, the folks that I'm connected with. And it's not just my peers that are leaders of organizations, but also employees, and younger, people that are saying, "I'm actually dealing with the same thing."

Meryl Comer (04:00):

What did those messages reveal about how much caregiving remains hidden in boardrooms, workplaces, and even families?

Angela Williams (04:09):

Well, it, it just really opened up for me the fact that I've always known this, but it just brought to life the fact that when people show up at work, they bring their whole selves to work, which means what they had to deal with at home, at the hospital, all the worries, all the concerns, all of the time, all of the energy, that was with them when they walked through the front door of the office or when they clicked on the computer and started working virtually even. And yet on the other side, as a workforce leader, I didn't see us as leaders talking about caregiving that much.

Meryl Comer (04:52):

Were there negative comments as well?

Angela Williams (04:55):

No. People shared their own stories where they said that they wish they, had the opportunity and the wherewithal to be able to step away. And I acknowledge that. That's the other thing. I acknowledge that, I've been blessed to be able to, one, have had a wonderful career and to be able to, at this moment in time, step away to focus on my mom and to listen to what my husband said to me repeatedly, "Angela, you do not want to live a life of regrets." So none of us want to live a life of regrets. All of us want to be all that we were created to be, to lean into our identity and to fulfill our purpose in life. And then life happens, right, unexpectedly and in ways that we can't control. And I want to make sure that everyone that's listening understands that Alzheimer's is that great equalizer.

Angela Williams (05:57):

However, how a person is able to, deal with it as a patient or to support a loved one as a caregiver differs depending on your socioeconomic status, where, what country you live in, your health insurance, the resources in your community, et cetera. And that's where, going back to your initial question to me, the fail, the, the failure and the brittleness of systems is something that we first have to acknowledge, and then secondly, as your, as the call to action that you've already identified, need to step into and make progress. And we need to think about more ways of giving people the permission to be all of who they are, bring their whole selves in, and be transparent without fear of ridicule or without fear of their job being, called into question.

Meryl Comer (06:58):

I've read you've organized your life around the four M's, so please share them.

Angela Williams (07:04):

<Laugh> You know, so I'm a lawyer and, and, and, and so when I used to, as a trial lawyer, think about my opening and closing statement, you want to be able to connect with the jury. So my life in this particular chapter that I'm in, and I don't know what number that chapter is, is around the four Ms. And the four M's are marriage, mom, ministry, and me.

Meryl Comer (07:28):

I was struck by the me, because the me came last. Is that a, a warning sign about the whole process of the caregiving role where you do come last because the needs are so immediate? How do you, how do you think about that?

Angela Williams (07:48):

That's a great question because I've also thought about that too. So sometimes it's, sometimes it's mom first, some days it's me first, some days it's marriage, some days it's ministry. And so I actually like to think of it in a circle because it's the circle of life where you have in this ring things that are on the circle, but you may be at different points throughout the day, every moment. I almost see it like the compass. So you know how the arrow just turns north, south, east, or west? Sometimes you have to adjust that arrow to focus on oneself because it is so easy to forget ourselves.

Meryl Comer (08:23):

So do you believe that there's a fallacy in deciding women's risk for Alzheimer's? How can we talk about it, our vulnerabilities, without addressing the downstream chronic stress that you've described or the health consequences of caregiving?

Angela Williams (08:44):

I think what you just said is really a call to action. And the call to action is one, we talk about caregivers and the supports and systems that they need to be effective. Two, we talk about the individual. You talked about women as the majority of, individuals that are diagnosed with Alzheimer's. So there's the self component, which also carries with it this, unknowing fear, stress, anxiety, mental health part of it. And then there's the system itself that is supposed to take care of us and help us along the way. And by systems, what do I mean? I mean the healthcare system. I, I, I, I'm talking about insurance systems. I am talking about education, governmental systems. All of these things should be working in concert along with the individual, no matter what your role or whether you're the patient or whether you're the caregiver or the family member, we should be working together and there's a, a, a clear break in this holistic way in which we approach Alzheimer's.

Meryl Comer (10:00):

You know, if you were advising a CEO or board tomorrow, what are the first three policies that you would insist on and what has to change in the workplace?

Angela Williams (10:12):

So there are some things that are already in place that can be enhanced in the workplace. So when you think about, extended leave or FMLA, Family Medical Leave Act, how can you ensure that your, employees are able to take advantage of that FMLA or extended leave without penalty and, and protecting the job to allow them to be able to come back or flexibility, work, work flexibility in terms of having someone or allowing someone to continue to do their job, but to be able to do it remotely and not as much in the office. Or I think about, allowing, a person to continue to work, but say change it to part-time. So the creativity is what I'm talking about, I think, and speaking to, which then leads to policy.

Meryl Comer (11:06):

Let me ask you, because we're coming into a more complex phase in the Alzheimer's space. We have some exciting therapies, but you have to test earlier, and there's a great concern that the stigma will just trend younger. So you've cut people off in their prime. Yeah. Do you see opportunities with the Americans for Disabilities Act that respects an individual where they are? Is there existing legislation we should be looking at in a very specific way and saying, "Yes, that's applicable. We treat people with dignity because people who are diagnosed, they want to live the best lives possible."

Angela Williams (11:47):

As long as they can.

Meryl Comer (11:48):

As long as you can. You're

Angela Williams (11:49):

Absolutely right. And that's a great idea. I had not thought about the Americans with Disabilities Act, but you're right. That is a wonderful law that was, passed into law many decades ago, and I think about just the pioneers that really lobbied Congress for passage. Mm-Hmm. But that's exactly the point and the ways in which we should looking, be looking at existing systems, existing policies to say what can be modified to address what we're experiencing now in society. And that I do want to acknowledge the other point that you just mentioned, which is getting tested early and knowing what you don't know or what you need to know. And you're the one that explained to me, "Angela, there are tests and you should get tested." So I want you to know when I went to the Mayo Clinic a couple of weeks ago, I did take the test because I wanted to understand what the markers are and if, if I have them, and, I do not.

Angela Williams (12:49):

But, it was just great. I was grateful to say, "Okay, there are tests. Let me find out." But the whole time leading up to me taking the test at the Mayo Clinic, I kept thinking, "Well, what if I do have the markers?" Then I started thinking about all of the what ifs. What should I be thinking about? How should I be planning? And I know that people, that already know or are, already exhibiting symptoms are having those thoughts. And that's also extremely important for us to think about how can we support them along the way?

Meryl Comer (13:24):

Well, that's why we talk about people living with Alzheimer's.

Angela Williams (13:28):

Yes.

Meryl Comer (13:29):

And not being the victims. Yes. That they're finding a way to

Angela Williams (13:33):

Live.

Meryl Comer (13:33):

Yes. Angela, before becoming a global nonprofit CEO, you served as a federal prosecutor, including work in the Justice Department Civil Rights Division. So you're trained, as I understand it, to follow the evidence, identify where the systems break down, and hold institutions accountable. If you were building a case - Yeah. Against the current, caregiving system, what would be Exhibit A?

Angela Williams (14:02):

In the military, I was a lawyer, did courts-martial, but also was the Geneva Convention lawyer. So during Desert Storm, understanding what the Geneva Convention defined as an acceptable target, versus an unacceptable one. And then how do you develop a plan, of, of attack? So it's, it's, it's beyond the courtroom, but Exhibit A really is looking at the landscape, understanding current policies, regulations, what you can and can't do, but then thinking about what can you do to be successful and to win, win in court, win in war.

Meryl Comer (14:46):

So let's check off some boxes. Who needs to be held accountable? Employers that offer little flexibility.

Angela Williams (14:55):

Check

Meryl Comer (14:55):

One. Check one. Health systems that treat caregivers as invisible. And we've all had that experience.

Angela Williams (15:02):

And I want to say not just health systems, let's go to the individual medical professionals. Check two. Hold them accountable.

Meryl Comer (15:12):

, Insurers that don't fund meaningful support.

Angela Williams (15:17):

Absolutely. Check three.

Meryl Comer (15:18):

And policymakers who presume that families can absorb the cost.

Angela Williams (15:23):

And check four, because policymakers, I guarantee you, if you talk to each of them, in their family or in their close circle, there has been someone that has had a neurological condition, memory loss, Alzheimer's, other, other medical issues. And so none of us are exempt, and all of us should feel this sense of urgency and need to work together. And Meryl, you had some statistics that you had shared about the impact of Alzheimer's on the economy. Can we talk about that for a little bit?

Meryl Comer (16:03):

Absolutely. Women in their prime who have to step out of the workplace are losing $274 billion a year in wages, jobs, social security, and dreams deferred. So it's that downstream impact that we're ignoring when we talk about caregiving. Yes. And that to me is really where if you want to get to that next <laugh> next career level, where, wherever you're headed, it's going to impact you at the back end, including your health.

Angela Williams (16:38):

And, and so as a policymaker, I, I would say $274 billion in lost wages, that's an individual, but there's a trickle down effect and an amplification economic effect. And that is, that, that's wages that can't be put back into the economy, and recovered by the economy through taxes, through the ability to purchase, through, all of, all of the things that come with being, a consumer, or an investor. And, and so this is, this, the, the, if we don't d - address this, then we will continue to be on the losing end of, of, of the economy, of business, of creativity, of ideas, of entrepreneurship, all of those things. And we miss out on the brilliance of the women who have had to step aside and out of the workforce because of the caregiving responsibilities. And that means we lose generations of wisdom, wealth, and insight.

Angela Williams (17:52):

And, and we need to acknowledge that.

Meryl Comer (17:54):

Let's continue that thread because when women try to step back into the workplace, people say, "Well, you were, you weren't working for two years. What's that about?" So, you know, you've set them back. How do you frame that? Is it a leadership gap?

Angela Williams (18:17):

You know, it's, this, this hearkens back to the conversation that has been going on for decades about on-ramps and off-ramps for mothers. And a woman has the child, decides to stay home for the formative years, and then comes back into the workplace. When you go back and look at the cases for support about why, businesses lose out if they don't create on-ramps and off-ramps for women, it still holds true for caregiving. And the, the lessons that you learn from being a caregiver, being that, being disciplined, being organized, having to be an advocate, those things, same skillsets are, are part of who you are and really make you an even more resilient person and able to take on a lot and juggle a lot and prioritize and have strategies that those core elements of, of a person's abilities, they stand firm no matter where they are.

Angela Williams (19:18):

And that's why I think companies, organizations miss out by not creating those on-ramps.

Meryl Comer (19:24):

Your civil rights work focused on communities facing, what is known as targeted harm. Do you see a parallel in some way in terms of the caregiving burdens that fall unequally, especially on women, Black and Latino families, and people who lack the financial re- resources or workplace power?

Angela Williams (19:47):

When I was the CEO of Easterseals, which is a national disability servicing organization, when COVID happened, I commissioned a, a study on the effects of COVID and the healthcare system for people of color with disabilities. And, and the reason I did that, and, and how I, I think that ties in even to now, is that, again, there's so many studies that show that Black and Brown people do not get the same level of care and attention and know how to access supports and services and do not know how to navigate the healthcare system, much less take advantage of it. They only do so in emergency situations. And when it comes to Alzheimer's or other neurological diseases, I think that's amplified.

Meryl Comer (20:35):

You talked about your years in the military. Mi- military organizations understand that a mission fails when people responsible for carrying it out are depleted.

Angela Williams (20:47):

Not only depleted, but they choose not to do their jobs. <Laugh> Okay.

Meryl Comer (20:52):

So why have health systems and employers, been slower to apply that principle to family caregivers?

Angela Williams (21:00):

That's a great question. <Laugh> That is a great question. I don't have the answer. That's a great question. All right.

Meryl Comer (21:07):

I'll give you another what I think is a great question. What would a true caregiving readiness plan look like?

Angela Williams (21:16):

It's what's interesting now, what you see, when you go in to see a doctor, they've now, they ask you those social determinants of health questions, and they didn't do that 10 years ago. There is at least starting to be this acknowledgement that when you go in to see your healthcare provider or medical professional, you're, again, bringing all of who you are, everything that's going on at home, into the office or into the clinic. And, and so the, the plan has to be holistic is essentially what I'm saying.

Meryl Comer (21:53):

We have a very distinguished audience at the summit as well as distinguished guests. In the book, Navigating in the Age of Chaos that you co-authored, you advance what is called the Bani Framework as a way of understanding the chaotic environment leaders now face. Please explain what that is, because Alzheimer's caregiving can feel exactly the same way.

Angela Williams (22:19):

It is. And, and you just brought up the fact that there's a distinguished audience that, and a very varied audience, with backgrounds and experiences that are watching this. And so whether it's scientists, I, I think about the, the Bani framework stands for B-A-N-I. We live with brittle systems. People are anxious. The world is non-linear and incomprehensible as we find ourselves in a fast-paced, moving environment, technological advances, et cetera. And so for the scientists and for healthcare, workers, I would say our systems are brittle, but where you are, you can take the existing system and make it bendable. And so as a politician who's listening to this, you have your governmental systems and your regulations and your laws. And Meryl, you mentioned the AD, the ADA. And, and how do you amplify or change or make what's already a regulation of law and bend it to accommodate what, where we find ourselves at this moment?

Angela Williams (23:29):

How do we take that from a negative to a positive and being attentive? And when you think about this world that where one plus two no longer eq- equals three, it's like it doesn't make sense. Then neuro flexibility is really what I think is, where we need to be psychologically. And again, you have an audience that understands that, where they are, whether it's in, pharmaceuticals, whether it's in, scientific, experiment and research, et cetera, y - their neuroflexibility is what moves humanity forward. It's their neuro flexibility that allows for the creation of new, ways of solving for this issue of Alzheimer's, this medical condition. It's, those in government that are able to look at neuro flexibility to see how can they take existing county budgets or state budgets and allocate dollars in a way that is more wholesome for caregivers, for people suffering with Alzheimer's, and then where the world is just completely incomprehensible.

Angela Williams (24:43):

It's just like I just can't begin to comprehend.

Meryl Comer (24:49):

So is it fair to say that's what it feels like sometimes when you're managing a loved one with <laugh> with a disease? Yeah.

Angela Williams (24:56):

It's, it's, it's pretty, crazy chaotic. <Laugh> It's pretty

Meryl Comer (24:59):

Crazy chaotic. If you could issue one challenge to the leaders in this room, and you've named them, and investors, employers, advocates - Yes. Policymakers, what would it be? Why is the time right now?

Angela Williams (25:18):

We can't keep waiting to solve for this. Every single one of us has a role to play because it could be you.

Meryl Comer (25:32):

You shared that you, in fact, after you and I had a conversation, went and got tested. Who was the first person you called after you got the results?

Angela Williams (25:43):

I told my husband.

Meryl Comer (25:45):

And what did you say?

Angela Williams (25:46):

I said, "You know that test Meryl told me to get? <Laugh> Well, I finally got the results. I don't have the markers." and that was a relief, and yet, I'm caring for my mom who is suffering from memory loss. And I would say, "And yet, you just don't know what will ever happen in your future medically to you as an individual or to yet an- an- another loved one. And so I'm grateful. At the same time, I'm still present and aware that I have a role to play along with everyone else that is a part of this incredible summit to do something about it.

Meryl Comer (26:35):

So this is your ne- next act.

Angela Williams (26:38):

Are you pulling me into something? <Laugh> I saw that. That's like -

Meryl Comer (26:42):

Absolutely. <Laugh> Well, I'm already in, right? I'm already in. You don't have a choice. <Laugh> Thank you so much for joining us. Thank you, Meryl. 

Our guest has been Angela Williams, past president and CEO of United Way Worldwide. And we want to thank her for sharing her personal story, her leadership insights from decades of public service to our country. Thank you, Angela. That's it for this edition. I'm Meryl Comer. Thank you for brainstorming with us.

Speaker 2 (27:18):

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