Transforming the System: Spreading Costs Equally

The backwards march on economic gains for women has begun and Alzheimer’s disease bears more of the blame than one would think. For millions of American women who live with the disease or find themselves in the role of caregiver, Alzheimer’s drains savings built over a lifetime, results in career sacrifices, and depletes finances.

Alzheimer’s causes staggering economic disparities, with women bearing 80 percent of the disease’s social cost. Fighting these disparities is the May theme of the We Won’t Wait Campaign, and the topic of an event we co-hosted with AARP on May 8: “Voices of Action: Addressing the Economic Disparities of Dementia for Women.”

The “Voices of Action” event explored a set of compelling new studies on the topic, like the Milken Institute’s report “The Price Women Pay for Dementia,” which finds that more than three-quarters of the US costs of Alzheimer’s are borne by women. This translates to $91 billion in treatment expenditures, indirect impacts, and altered living arrangements. And this total is only going to increase. It’s estimated that the impact of Alzheimer’s on women will cost the US economy $5.1 trillion through 2040.

But these disparities are not inevitable; they are the result of our existing social support, medical, and workplace systems. We must transform these systems to spread the costs of Alzheimer’s in a more equal way. There are three core causes – and each can be solved:

 

Women pay for gaps in support.

  • Challenge: Our current support systems do not always adequately provide for those with Alzheimer’s, which leaves unpaid family caregivers to bear the burden. Women account for more than 2/3 of these caregivers, who provided roughly $230 billion in unpaid care in 2016. Alzheimer’s caregivers also spend an average of $5,155 out-of-pocket on care annually, compounding losses to income and savings.
  • Potential Solutions: In addition to dealing with the many challenges of giving care, caregivers are often faced with unanticipated challenges related to their own physical and mental health and economic well-being. We must advocate for our caregivers – focusing our attention on ensuring that they receive proper training and adequate support. Providing better caregiver training would alleviate the burden on family caregivers and lead to better outcomes for patients as well..

 

Women pay for medical treatment and healthcare.

  • Challenge: In the US, total Alzheimer’s treatment expenditures for women are nearly three times greater than those for men, and in each individual case of Alzheimer’s, the direct treatment costs are $3,000 higher for women. At the same time, funding for sex-based medical research remains limited, which slows progress towards therapeutic breakthroughs.
  • Potential Solutions: Developing effective preventions, treatments, and ultimately, a cure for Alzheimer’s will require far greater funding from both private and public sources, with a particular focus on sex-based research. Ultimately, we will also need public and private stakeholders in the Alzheimer’s space to ensure that eventual treatments will be accessible to as many patients as possible.

 

Women pay for the workplace and professional impacts of Alzheimer’s.

  • Challenge: 60 percent more women Alzheimer’s caregivers leave their jobs than men, and this decision can cost more than $300,000 in lost wages and Social Security benefits. Overall, the impact of Alzheimer’s care on women employees results in almost $30 billion in lost GDP annually – 80 percent due to absenteeism and presenteeism.
  • Potential Solutions: Businesses and policymakers should adopt policies that support employee caregivers, including telecommuting, flex time, and other arrangements that allow for caregiving, including paid time off. Many of these policies will also reduce productivity losses, increase employee loyalty and benefit companies’ bottom-lines. Policy changes should also be coupled with awareness and educational campaigns to create workplaces and work cultures that are more accepting and accommodating of family caregivers.
     

We Won’t Wait to challenge the skyrocketing costs of Alzheimer’s disease and their impacts on women. Through channels like the Voices of Action event this month, or WA2 President Jill Lesser’s testimony to Congress, we are overturning business-as-usual approaches and insisting on new, less expensive, and more equitable solutions for Alzheimer’s.

WomenAgainstAlzheimer’s Mourns Passing of Adored and Inspirational Co-Founder and Vice-Chair, Trish Vradenburg

As many of you know, our beloved founder, Trish Vradenburg passed away yesterday. Our hearts are broken. In my grief, I wanted to reflect on her life and what she meant to me and to our community.  There are simply no words to fully express my grief and the deep sense of empathy I feel for her husband, best friend, lover and soul mate George Vradenburg.  Trish was a rare breed, the perfect combination of consummate lady and inveterate ball buster – she was smart, loving, devoted and most of all, hilarious.  She could take even the most serious subject and burst the bubble of tension in any room with a perfectly timed joke, usually no more than a few words.  She was understated but her presence was enormous – a two-step only the most amazing of people can accomplish. 
 
Trish clearly took a lot of her inspiration in life from her mother, and her mother’s final gift to Trish was the life’s passion she would undertake until the end.  It was a gift that even Trish would say in her most honest moments – thanks mom, but no thanks, can’t you give me something else!  Trish talked often about her mother – she talked proudly of her role in democratic politics and her unwillingness to take no for an answer.  She was clearly fiercely loyal to her mother and even wrote a play, not letting the “bimbo” her father dated while her mother was sick with Alzheimer’s have the last word.  What I hope that Trish saw was that she created, through her authenticity and devotion to family and the causes she cared about, the same loyalty in her kids and kids-in-law and in everyone who came into contact with her.  When George and Trish moved to DC for him to take a new job, I think Trish saw the move as temporary, and that her real home LA awaited their return.  Nonetheless, Trish entered DC with the same gusto she does everything else, creating an enormous network of friends and admirers and rising to the top of the circle of generosity, making life better for those in DC and beyond.  No wonder, she was always the belle of the ball! 
 
For those of us just behind Trish in the fight for women’s equality, Trish was an example every day.  She was an independent, career-minded woman who was able also to put family first and was not afraid that “standing by her man” would compromise her commitment to feminism and equality.  It is too often the case that women feel the need to choose one or the other.  Trish’s courage and independence was an example to me every day of how to literally have it all! 
 
And, then there was Trish’s tenacity – and boy was she tenacious.  The most incredible thing to watch though was how her tenacity was cloaked in her infectious smile, beautiful clothes, brilliant conversation and humor.  Trish was famous for refusing to leave a member of Congress’ or a Senator’s office before she got what she wanted.  She worked a room like no other – recently racking up 20 Senators in a weekend to join her Alzheimer’s Party – a place where she felt strongly we all could and should come together.  The best thing though was seeing Trish recount these successes – she took such pleasure in making people see just how important this cause is and would stop at nothing to make others see the light!
 
I know I am not the only one who will miss Trish today and every day.  I do know that my work advancing the cause of women, curing Alzheimer’s and fighting for what is right just got a lot of new energy – and I will feel it each and every day.  

Please see below for the statement from UsAgainstAlzheimer's.

-Jill Lesser
President, WomenAgainstAlzheimers


UsAgainstAlzheimer’s Mourns Passing of Adored and Inspirational Co-Founder and Vice-Chair Trish Vradenburg
 
Trish’s Deep-Rooted and Unflinching Passion to Fight Alzheimer’s Creates Admirable and Aspirational Legacy
 

WASHINGTON, DC—UsAgainstAlzheimer’s Co-Founder and Vice-Chair Trish Vradenburg’s unflinching spirit – her creativity and imagination, quick-witted humor, empathy, generosity and her exceptional tenacity to stop the suffering of others – was captured in her every action. It is with immense sadness that UsAgainstAlzheimer’s announces her passing, and it is with the utmost gratitude that the organization cherishes her legacy and forges ahead in her memory.

Trish’s life was an inspiring portrait of creativity and versatility, employing her gifts of writing and storytelling throughout a successful professional career. She began her career as a speechwriter in the U.S. Senate. She wrote for various television shows, including Designing Women, Family Ties and Kate and Allie. Trish’s novel, Liberated Lady, was chosen as Literary Guild and Doubleday Book Club selections and has been translated into three foreign languages.

As a journalist, she wrote extensively for The New York Daily News, The Boston Globe, The Washington Post, Ladies’ Home Journal and Women’s Day. Surviving Grace, Trish’s quasi-autobiographical play about a sitcom writer and her mom battling Alzheimer’s disease together, was produced at The Kennedy Center in Washington, D.C., and Off Broadway at the Union Square Theater. It is now being performed at various community theaters throughout the country, as well as in Brazil.

Founded with her husband George Vradenburg, UsAgainstAlzheimer’s was born out of their passion to fight back against Alzheimer’s disease, which Trish’s mother, Bea Lerner, the wife of her father Joseph H. Lerner, succumbed to in 1992. Trish’s unique whimsical style, the perfect complement to George’s more serious side, was instrumental in leading the organization on a path to make meaningful progress against a disease that caused their family so much pain.

Trish was a gifted and relentless advocate. She helped achieve increased funding for Alzheimer’s research and build a growing public-private consensus that a cure for the disease must be reached by the year 2025. Recently, she spearheaded the launch of the Alzheimer’s Party, imploring members of Congress to join a bipartisan movement to end Alzheimer’s disease.

Trish also served on the Council of Theater J and on the boards of DC Vote and the Vradenburg Foundation.

She is survived by her adoring husband George; daughter Alissa Vradenburg and son-in-law Michael Sheresky of Los Angeles, CA; son Tyler Vradenburg and daughter-in-law Jeannine Cacioppe Vradenburg of Chicago IL; grandchildren Harrison Sheresky, Skyler Sheresky, May Vradenburg and Gavin Vradenburg; and her brother Rabbi Michael Lerner and sister-in-law Cat Zavis of Berkeley, CA. She was preceded in death by her father, Judge Joseph H. Lerner, and mother, Bea Lerner.

Private family funeral services will take place later this week in Los Angeles, followed by a public memorial service in Washington, D.C., on May 9 at a venue to be determined. Family and friends will be honoring Trish’s legacy; details will be shared as they become available.

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UsAgainstAlzheimer's is an innovative, patient-centered non-profit demanding – and delivering – a solution to Alzheimer’s. Driven by the suffering of millions of families, UsAgainstAlzheimer’s presses for greater urgency from government, industry and the scientific community in the quest for an Alzheimer's cure – accomplishing this through its own patient-centered effective leadership, collaborative advocacy and strategic investments. 

Founded in 2010, UsAgainstAlzheimer’s has worked across sectors to: (1) secure the national goal of preventing and effectively treating Alzheimer’s by 2025; (2) help secure nearly $1 billion in additional public funding for Alzheimer’s research over the past few years; (3) drive global efforts that resulted in the leaders of the world’s most powerful nations, the G7 group, to embrace a similar 2025 goal and to call for greater levels of research investment and collaboration; (4) transform the system of Alzheimer’s clinical trials for greater speed, efficiency and quality; and (5) forge a global process of industry, regulators and payers to bring greater clarity to the approval and payment of innovative medicines for Alzheimer’s.

Where We Stand: Budgets, Brain-Health, & Healthcare

As we head into spring and see blossoms on the trees, we are reminded of the importance of recommitting to our fight on behalf of the millions of women living with Alzheimer’s. We are also reminded that we have the power to take our health into our own hands, to pay attention to and embrace our brain health, and keep ourselves and our families healthy longer.

The last few months have been a time of political change, and already we have seen policy proposals that threaten to turn back the clock on our war against Alzheimer’s. Blocked in Congress for the time being, the repeal and replacement of the Affordable Care Act (ACA) would severely impact individuals living with Alzheimer’s who rely on the ACA for adequate insurance coverage. This is particularly true for low-income Americans, on whom Alzheimer’s already puts an unfair burden. And the Trump administration’s proposed 2018 budget would cut funding for the National Institutes of Health (NIH) by nearly 20%, stalling or ending vital projects at the world’s leading Alzheimer’s and brain health research organization.

This is a time to rally for our cause. We are calling on lawmakers to recognize our concerns through the strength of the We Wont Wait campaign’s partnerships, while continuing to advocate for immediate Alzheimer’s solutions, including sex-based research, brain health awareness, and support for caregivers.

At the same time, we are engaging individuals, communities, and the nation in positive discussions about the steps everyone can take to fight Alzheimer’s. These include efforts to build awareness of brain health and Alzheimer’s risk reduction strategies; many of which are based on pioneering research from the NIH. Brain health is the ability to remember, learn, play, concentrate, and maintain a clear and active mind, throughout the course of your life. Yet, few people or policymakers recognize the importance of brain health to overall well-being.

The need for brain health awareness and action is greatest among women. Not only are women twice as likely to develop Alzheimer’s, we are also twice as likely to endure the mental, emotional, and physical impacts of caregiving, which can further harm brain health. Therefore, brain health awareness is both a women’s health issue and a political priority.

That’s why we want to provide you with some tips and tricks for keeping your brain healthy. As you join us in raising our voices for the NIH and ACA recipients, we encourage you to share what we already know about Alzheimer’s – that maintaining a strong, healthy brain is both critical and achievable with everyday changes.

A Harvard Special Report outlines six key steps for brain health:

  1. Exercise Regularly – Staying active improves and protects cardiovascular health and lung function, which are closely linked to brain health. Therefore, daily exercise and activity, whether it’s walking, gardening, or swimming, help to maintain both physical and mental fitness.

  2. Actively Learn – Researchers have found that education correlates with stronger cognitive functioning at older ages. Learning and stimulating your mind can encompass a range of efforts, including reading, taking classes, and trying new hobbies.

  3. Maintain a Healthy Diet – The benefits of a healthy diet are well-known, but their impact on brain health adds another reason to choose a balanced mix of foods. Opt for fruits, vegetables, fish, and whole grains, while steering clear of saturated and trans fats and extra calories.

  4. Sleep Well – Getting six to eight hours of high-quality sleep each night can be beneficial for brain health. To improve sleeping habits, try to stick to a regular schedule, avoid caffeine and excessive exercise at night, and speak with your doctor about recurring sleep problems.

  5. Social Connection – Receiving support from others has been shown to boost mental performance, while building and maintaining close, supportive relationships provides a variety of benefits. These social ties are especially critical for older adults, who face a greater risk for loneliness and isolation.

  6. Avoid Smoking – Research has found that smokers have more difficulty recalling names and faces than non-smokers, and smoking also has a negative effect on the lungs and cardiovascular system. As a result, smoking cessation is a vital lifestyle change for preserving brain health.

Recent proposals indicate a political atmosphere that doesn’t recognize the value of brain health or the fight against Alzheimer’s. We Won’t Wait to change that. Let’s make brain health into a household term, providing a foundation for more advocates to demand action from their representatives in our government.

February Recap

Jill Lesser, WA2 President, recently co-authored an op-ed with Stephanie Monroe, Executive Director of AfricanAmericansAgainstAlzheimer’s, in Morning Consult. The piece, “Heart Health, Black History Month and Brain Health: An Unlikely Connection,” calls for advocacy efforts that spotlight the links between cardiovascular disease, Alzheimer’s, and the health disparities faced by women from minority groups.

Driving Progress in 2017

In the United States, a change of administration always brings uncertainty. With new leaders entering Congress and the White House, we at WA2 know we can turn that uncertainty into opportunity. Opportunity because we know finding a cure for Alzheimer’s and alleviating its burden on families can bring us together. WA2 is committed to continuing to lead a campaign to promote women’s brain health and fight against Alzheimer’s. 2017 is a critical year in our battle to stop Alzheimer’s in its tracks by 2020. 

We are confident in the progress we will make because we know that our passionate partners and advocates can change individual lives and communities, intensify medical and private-sector responses, and shape the national policy landscape. Alzheimer’s is one of the few issues that cuts across party lines, affecting women and caregivers of all ages, races, creeds, and political beliefs. This widespread impact creates a shared basis for sustained action by women leaders across America, from caregivers and community advocates to legislators and executive leaders. This is the central strength of our movement.

To guide WA2 and our supporters, we would like to highlight the pillars of a concerted, nationwide effort to combat Alzheimer’s in the year ahead. This is an overall summary – we will explore each of these in greater depth throughout the year. If we dedicate ourselves to achieving these goals, and encourage others to join us, then 2017 will be a time of advocacy, awareness, and progress towards our goal of ending Alzheimer’s by 2020.

First, we must create a groundswell of awareness for brain health and risk reduction strategies. Through one-on-one conversations, community-based outreach, and national campaigns, we can inform women of all ages about the importance of protecting their brain, beginning early and continuing throughout their lives. This will encourage women to make beneficial lifestyle changes and adopt strategies to reduce their overall risk of Alzheimer’s.

At the same time, we must work with the medical community to create a system-wide framework to promote brain health. We must educate physicians about the need for a regular “check-up from the neck up,” and make this a common practice in doctor’s offices across the US. With this practice in place, more patients will become aware of the medical need for brain health, and more physicians will be able to identify and address the early signs of cognitive impairment. Additionally, this will increase participation in the critical clinical research that will help find a cure. 

We must also join together to transform every American community into a base of support for those with Alzheimer’s and their families. Our January Campaign partner, Dementia Friendly America, is driving progress in this area by working with supporters to create communities that are informed, safe, and respectful for those affected by Alzheimer’s and their care partners. By providing engagement, tools, and action plans, we can build a network of communities that address Alzheimer’s locally, and expand that network to reach every person in the US affected by this disease.

In addition, we must open and drive national conversations about the disparate impact of Alzheimer’s on women. Women are twice as likely both to die from this disease and become Alzheimer’s caregivers. Further, women lose hundreds of millions of dollars every year as a result of the disease. These disparities are unacceptable. We must focus private and public discussions on these burdens, and call for immediate solutions – solutions that include an increase in sex-based research and changes in policies that help women meet the demands of care while maintaining their careers. If successful, this advocacy will also raise rates of diagnosis, increase women’s participation in medical research, and alleviate the current burdens of the disease on patients and their caregivers.

Finally, we must spark progress at the federal level, and channel that progress into key policy changes. January marks a new year, a new Congress, and a new President, which create opportunities to shift dialogues and move Alzheimer’s to the top of Washington’s agenda. Through advocacy and engagement, we can inform law-makers and push for specific improvements, including increases in research funding, particularly for sex-based studies, enhanced support for affected individuals, and improved access to diagnosis and care.

If we commit to taking these actions, we will achieve widespread advances. Women across America must unite to promote brain health, reshape communities and the medical system, and amplify the reach of local, state, and federal advocacy. We must insist on an urgent national response that reflects the disease’s uneven and unjust impact on women. Together, we can build on our current momentum and ensure that 2017 is the year when we stepped closer to the end of Alzheimer’s. 

Tough Conversations

Around the country, families are gathering for holiday celebrations, visiting loved ones, and discussing their plans for the coming year. Yet too often, families miss this opportunity to have the important – but difficult – conversations about older relatives’ wishes for their end-of-life care.

If an older family member develops a serious illness that impairs their decision-making capacity, loved ones will often face a host of challenging caregiving, medical, financial, and legal decisions. Establishing a relative’s wishes ahead of time, through frank and intimate discussions, provides vital guidance to navigate these issues. This not only ensures that caregiving and medical care match an individual’s values, but also helps adult children and others to avoid feelings of guilt, confusion, or anxiety, which often arise when they must make these choices unaided.

However, families frequently avoid talking about this subject, which can be uncomfortable and difficult to raise. In fact, though 90% of Americans say that talking with their loved ones about end-of-life care is important, only 27% have done so. Family members sometimes postpone conversations until a health problem arises, but that may already be too late for the affected individual to communicate – especially if Alzheimer’s or dementia affects their cognition.

However, there are ample resources and proven strategies to help adult children begin these conversations with their parents and other older adults. The Conversation Project provides a Conversation Starter Kit to steer the discussion, as well as a kit specifically for Alzheimer’s and dementia. These include questions to ask older relatives, potential conversation starters, and a list of important issues to address. AARP also offers useful tips for starting to talk about advanced care planning and end-of-life preferences.

Re-uniting with family for the holidays is an ideal time to broach this topic, and can also serve as the first warning of a decline in health, especially if relatives have not been in regular, close contact with an older adult. Though the details of these discussions will vary, there are a few general principles to keep in mind:

  • Plan ahead. Bringing up end-of-life choices can be daunting, but preparation helps to ensure both that you follow through and that you cover all the areas that are most important to you. Ahead of time, consider who you want to talk to, when would be best to talk, where would be most comfortable, and the topics you would like to discuss first. You can also plan your “opening lines” beforehand, or even bring written materials, if you feel they are appropriate for the situation.
  • Address key questions. Ideally, these conversations will provide practical takeaways for a range of issues, and could even result in detailed plans. However, even if you don’t reach this level of depth, it’s important to get answers for key questions related to medical care, end-of-life choices, and legal and financial matters. For example, do older relatives have any existing concerns about their health? Have they noticed recent changes in memory or thinking? Who should be involved in caregiving and end-of-life decisions? If the situation arises, do they want the full extent of medical intervention possible, or would they prefer more limited comfort care? Where would they like this phase of life to occur?
  • Have multiple conversations. A single talk cannot cover all the topics necessary for a complete understanding of end-of-life values and wishes. Older relatives will likely need to reflect on these important questions, alone or with others, before reaching a conclusion. Expect to have multiple conversations, and don’t create unnecessary pressure by attempting to address every possible scenario in a single discussion. Once you bring up the topic for the first time, later conversations will likely be easier and more focused.

Honest, two-way communication is the best way to prepare a family for the tough decisions that accompany an older relative’s end-of-life care. By establishing a shared understanding about this phase of life, families can ensure that a loved ones’ wishes are respected, while also reducing the stress and emotional strain of this period for other relatives. The weeks ahead offer an excellent opportunity to take a first – or fifth – step towards this reassuring,

Guest Blog: Lisa Winstel, COO, Caregiver Action Network

November is National Family Caregivers Month: a time to rally in support of the 90 million Americans who provide care to loved ones, especially those facing the complex and exhausting challenges of Alzheimer’s.

Caregiver Action Network, a We Won’t Wait campaign partner, is spearheading National Family Caregivers Month with activities and outreach around the theme, “Take Care to Give Care.” This addresses a central dilemma for caregivers: providing care strains their own health, finances, and mental well-being. In response, Caregiver Action Network’s awareness effort encourages all caregivers to prioritize their personal well-being and calls on communities to share the care burden.

In this year’s Presidential Proclamation, President Obama echoes this message, saying that “our Nation was founded on the fundamental ideal that we all do better when we look out for one another...During National Family Caregivers Month, we reaffirm our support for those who give of themselves to be there for their family, friends, and neighbors in challenging times.”

Caregiving’s physical, emotional, and financial toll is especially severe for Alzheimer’s. These caregivers – two-thirds of whom are women – struggle with increased medical costs, disrupted careers, and compromised brain health. Responsibilities and costs mount as the disease progresses, often requiring around-the-clock care for a decade or more.

Fortunately, there are a range of proven strategies for a healthy caregiving balance. To manage the burden, caregivers can communicate with their support network, prioritize certain tasks, and delegate when possible. The essentials of wellness, such as nutrition, exercise, and rest, are doubly important for caregivers; they enable high-quality, sustained care, while mitigating health impacts. And for the unique behavioral and emotional changes that comes with Alzheimer’s, certain approaches can ease daily frustrations for both the caregiver and the person with Alzheimer’s.

Caregiver Action Network has published a useful set of tips, facts, and considerations for caregivers. Available here, they are:

·      Caregiving can be a stressful job. Most family caregivers say they feel stressed providing care for a loved one. With all of their caregiving responsibilities – from managing medications to arranging doctor appointments to planning meals – caregivers too often put themselves last.

·      The stress of caregiving impacts your own health. One out of five caregivers admit they have sacrificed their own physical health while caring for a loved one. Due to stress, family caregivers have a disproportionate number of health and emotional problems. They are twice as likely to suffer depression and are at increased risk for many other chronic conditions.

·      Proper nutrition helps promote good health. Ensuring that you are getting proper nutrition is key to help maintain your strength, energy and stamina, as well as strengthening your immune system. Maintaining a healthy diet is one of the most powerful things you can do to take care of yourself and keep a positive attitude overall.

·      Ensuring good nutrition for your loved one helps make care easier. As many as half of all older adults are at risk for malnutrition. Good nutrition can help maintain muscle health, support recovery, and reduce risk for re-hospitalization – which may help make your care of a loved one easier.

·      Remember: “Rest. Recharge. Respite.” People think of respite as a luxury, but considering caregivers’ higher risk for health issues from chronic stress, those risks can be a lot costlier than some time away to recharge. The chance to take a breather, the opportunity to re-energize, is vital in order for you to be as good a caregiver tomorrow as you were today.

These keys can power women and families during the Alzheimer’s journey. Please keep them in mind and share with your network, whether you are a caregiver yourself or know affected individuals. These tools are critical for maximizing the quality of Alzheimer’s care, while minimizing the impact on caregivers’ health and opportunities.

National Alzheimer's Summit

As I looked across the room at September’s Out of the Shadows dinner, I couldn’t believe how far WA2 and the Alzheimer’s cause had come. Our distinguished guests that evening included members of Congress, global business leaders, and our nation’s most influential Alzheimer’s advocates. Their presence, and shared dedication, demonstrated the progress we’ve achieved since our first Out of the Shadows dinner in 2013.

I personally identify with this change because, a decade ago, I never could have predicted my journey to today. When the disease upended my life, I was at the height of my career, with three young sons, and an engaging, high-intensity job. Then my mother developed Alzheimer’s. Anxious and confused, I struggled to manage and protect her health from hundreds of miles away. As the disease progressed, I moved her closer, took a leave of absence from work, and committed myself to caregiving, full-time. 

That experience changed the course of my life. Now, I am immersed in the inspiring work, insights, and vision of those on the frontlines of the fight against Alzheimer’s.

We have driven rapid progress with recent efforts, both at WA2 and in the wider Alzheimer’s community. In particular, during the last week of September, WA2 held convenings focused on the injustices of Alzheimer’s for women and communities of color, calling on leaders and institutions, at the highest level, to address these pressing challenges.

At the National Alzheimer’s Summit, WA2 hosted a panel, The Economic Impact of Alzheimer’s on Women and Communities of Color, which examined how the disease disproportionately drains the savings and income of women and minorities; often with devastating long-term consequences. Our panelists were Ross DeVol, Chief Research Officer at the Milken Institute; Darrell Gaskin, a Professor at the Johns Hopkins Center for Health Disparities Solutions; Helen Sims, Vice President at Merrill Lynch; and Dr. William Vega, Provost Professor at the USC Edward R. Roybal Institute on Aging.

They examined the issue both from a national level, where 80% of the social burden of Alzheimer’s is borne by women, and an individual level, where families often deplete their savings and even forego basic necessities to pay for care. The panel discussed strategies for coping with this burden, and formulated possible policy responses to aid affected families and communities.

Later that day, the Out of the Shadows dinner recognized those who have championed Alzheimer’s in national conversations, the private sector, and their own lives. Honorees included Eli Lilly & Co., represented by incoming CEO David Ricks, House Minority Leader Nancy Pelosi, Senator Kelly Ayotte, and Greg O’Brien, who was recognized with the inaugural Bea Learner Valor Award for his personal battle against Alzheimer’s. First Lady Laura Bush delivered the keynote address, and First Ladies Rosalynn Carter, Barbara Bush, Hillary Clinton, and Michelle Obama declared their support for our nation’s caregivers in a unique video series.

At the Diversifying the Race for a Cure and Care convening, leaders and organizations representing diverse backgrounds shared their views on the distinct challenges of Alzheimer’s for minorities. The discussion revolved around the disparities of the disease’s impacts, and how community networks can help families to manage these impacts. The result was the first-ever community-driven plan to build awareness, understanding, and action on Alzheimer’s among minorities.

All of these events are engines for change. We are reaching milestones at a sustained pace, and I am confident that we will build on this momentum. We will develop and implement plans to help women and families struggling with the disease, and raise awareness of risk reduction strategies. We will drive scientific and therapeutic progress, including sex-based studies, while preparing the healthcare system to provide access to breakthrough treatments.

With these advances, we are generating hope. Meetings like the National Alzheimer’s Summit are establishing long-term commitments and strategies for tackling the disease, and, critically, prioritizing the needs of women and minorities.

 If we can continue this progress, we will create a future where women are spared from the gut-wrenching decisions and personal tragedy of this disease. Ten years ago, my life before Alzheimer’s ended; ten years from now, we will end Alzheimer’s.

-Jill Lesser, President, WomenAgainstAlzheimer's

Why We Won’t Wait

In recognition of World Alzheimer’s Month, WomenAgainstAlzheimer’s and the We Won’t Wait campaign would like to recognize and remember the millions of women who are disproportionately harmed by Alzheimer’s. They are victims, caregivers, and families – mothers, wives, and daughters. For too long, the injustice of their sacrifice and suffering has been overlooked.

The Injustices of Women & Alzheimer’s

Consider a typical Alzheimer’s journey: a woman over sixty-five has a one-in-six chance of developing the disease; twice the rate of breast cancer. As the first symptoms appear, she becomes one of the 5.4 million Americans with Alzheimer’s – over 60% of whom are women. The person who provides care, her daughter, is also a woman, like two-thirds of Alzheimer’s caregivers in the U.S.

Her daughter struggles with the strain of caregiving: a round-the-clock job that can last for a decade, perhaps adding to her pre-existing around-the-clock job of raising children. She abandons her career and depletes her savings; women bear 80% of Alzheimer’s’ $200 billion social cost. Caregiving strains her physical and emotional health and therefore that of her family. She watches as her mother fades away, with no treatment and little hope for a cure.

Perhaps most tragically, their struggle plays out in the shadows, like the experiences of most American women affected by Alzheimer’s. This is tragic because, while our society can’t offer a cure tomorrow, we can recognize and change the many ways that the Alzheimer’s burden falls on women.

Currently, our country is doing little to address this devastating disease, and the inequality of its growing toll. Instead, women are asked to wait: wait for Alzheimer’s research funding, wait for policies to support caregivers, wait for improvements in diagnosis and treatment. To wait as the number of affected individuals triples by 2050.

Our Campaign

That’s why WomenAgainstAlzheimer’s has launched the We Won’t Wait campaign. We have a vision for a world united by women to stop Alzheimer’s. We believe that women must take urgent action to spur progress, and achieve tangible results in the lives of those who combat the disease daily.

The millions of women affected by Alzheimer’s are a community of immense strength. The We Won’t Wait campaign channels our shared experiences and outrage into a disruptive movement to fight every aspect of Alzheimer’s, immediately.

We are determined to reverse policy inertia, stalled conversations, and widespread ignorance. Public research funding for Alzheimer’s is a tenth of that for other diseases. Research on sex-based differences in brain disease, in particular, is underfunded and understudied. The journey to a simple diagnosis is often long and complicated, and access to clinical trials is uneven. Brain health and risk reduction strategies are not widely publicized.

We will overcome these challenges. Together, we will spark a far-reaching response to address the greatest public health crisis, and economic and social imperative for women, in our time. Not merely a campaign, we are creating a movement that will spotlight the disease and launch multifaceted solutions.

Fighting Every Aspect of Alzheimer’s

Our response has five pillars: we will multiply the amount of public funding for Alzheimer’s research; demand that sex-based studies are a research priority; overhaul social support, medical, and workplace systems to alleviate the economic injustice of Alzheimer’s; improve families’ access to diagnosis, treatment, and clinical trials; and promote risk reduction strategies and ideas for living well with Alzheimer’s.

The campaign’s partners unite women’s health organizations, women’s advocacy and civil rights groups, business associations, and thousands of women who believe that no one should have to endure this tragedy. We bring experience, leadership, and influence to reframe and prioritize Alzheimer’s, across business, policy, and society.

We need your voice. Please read more about WomenAgainstAlzheimer’s and the We Won’t Wait campaign here, and consider joining the movement, sharing our message, and attending our events. With the help of advocates like you, we can end this disease.

We won’t wait.

Summer Bulletin

Dear Partners and Supporters of the We Won’t Wait Campaign,
 
We hope this message finds you well. Each month, we will share updates about our work, provide the latest insights about the news of our field, highlight one of our campaign partners, and provide content you can share with your constituents. This month we focus our attention on increasing clinical trial participation and promoting healthy brain initiatives – both critical to our fight against Alzheimer’s disease.

Campaign Updates

Luncheon Recap. In June, we held our first We Won’t Wait Monthly Gathering to Stop Alzheimer’s Conference Call and Webinar. We hope you’re able to join our next Monthly Gathering in September.
 

Important Convenings Advancing Our Work
 
Alzheimer’s Association International Conference (AAIC) in Toronto. In July at AAIC, we hosted an issue roundtable as part of our role as a founding member of the Global Alliance on Women’s Brain Health. The luncheon gathered international stakeholders to collaborate on a unified strategy for solutions for Alzheimer’s disease, particularly for the women who are more likely to suffer from it and experience the emotional and physical tolls of caregiving. At this event, we heard that while the overall rate of Alzheimer's might be leveling off, data shows that for women, it is not.  Our luncheon reinforced the mission of the Global Alliance to push the issue of women and dementia onto the global stage, working to expand beyond the US, Canada and Western Europe into developing countries in Africa, Asia and South America where women's issues are critical and different.
 
At this event, we announced the launch of Phase II of the Health-eBrain Study, which is intended to investigate the impact the Alzheimer’s caregiving experience has on brain and behavioral health. Phase II’s objective is to evaluate the effectiveness of an intervention that combines virtual case management with a cognitive assessment app, through mobile digital health tools, in reducing depression and improving cognition among informal caregivers. The results will help further the efforts of BrightFocus and The Geoffrey Beene Foundation Alzheimer’s Initiative to provide resources, through innovative research, to those affected by Alzheimer’s and their caregivers.
 
Democratic National Convention in Philadelphia. As a part of the Democratic National Convention, we joined many of our new partners – National Partnership for Women and Families, National Women’s Law Center, National Consumers League, Jewish Women International, National Organization for Women Foundation and others – to highlight the issue of women and dementia by co-hosting a Women Leading the Way Luncheon featuring Senators Stabenow and Markey, Lynda Carter, as well as Dan and B. Smith. We celebrated prominent women paving the way to achieve our nation’s Alzheimer’s goals. The event was hosted by the Alzheimer’s Readiness Project, an initiative by Eli Lilly and Company.

Policy Push: 
Our Effort to Bring Supports to Caregivers

Last month, we took our fight to the Hill, submitting a testimony to a hearing of the Senate Finance Committee’s Subcommittee on Health. The statement, authored by WA2 President Jill Lesser, called for members to co-sponsor the Alzheimer’s Beneficiary and Caregiver Support Act (S. 3137) which would provide Alzheimer’s disease caregiver support services to informal or non-paid caregivers to both keep patients in the home setting for longer periods of time and improve the quality of life of caregivers, ultimately resulting in lower Medicare and Medicaid program costs. 

Monthly Social Action:  
Share Content about the Health-eBrain Study & Clinical Trial Participation

We are asking all of our women founders and partners to consider sharing information about the Heath-eBrain study this month. We've included messages for you to use. 
 
Facebook:
Are you yourself – or someone you know – one of the millions of family members looking after a loved one with Alzheimer’s disease? It is important that caregivers know they are not alone. New studies show that the intensity of care, over years, negatively impacts caregivers' cognitive vitality and physical health.
 
Now, with the launch of Health-eBrain Phase II, we are taking action and calling upon caregivers to join the Health-eBrain study and participate in an online assessment of your cognitive vitality and brain health. Help researchers develop a new “Mobile Mirror for Caregivers.” Visit the Health-eBrain Study website to sign up!
 
Twitter:
The 1st person to be cured of Alzheimer’s will be in a clinical trial. Joining @WomenAgstAlz 2 help increase trial participation #WeWontWait
 
The Health-eBrain study tracks changes in the cognitive vitality of AD caregivers who suffer in silence. Join at http://bit.ly/2ayncUR
 
Do you know an Alzheimer’s caregiver? Ask them to help scientists learn how caregiving impacts brain performance http://bit.ly/2ayncUR
 
Women’s brain health is essential to the fight against Alzheimer’s. Why is it important to you? Tell your story: http://bit.ly/29WpI7B

Upcoming Events You Don’t Want to Miss
 
National Alzheimer’s Summit and Out of the Shadows Dinner. Please join us for our National Alzheimer's Summit and Hill Day taking place September 27 – 29 in Washington, DC. We especially hope you can join us for the Out of the Shadows Dinner on September 28 – an evening of inspiration and conversation about this nation’s biggest health crisis for women: Alzheimer’s. More information and registration for the Summit and Dinner can be found here.

Network Update

LatinosAgainstAlzheimer’s: 87th Annual LULAC Convention. Congratulations to the League of United Latin American Citizens (LULAC) on a successful 2016 Annual Convention and gracias for inviting the LatinosAgainstAlzheimer's Network to host a workshop on Latinos and Alzheimer's. The workshop featured LA2 coalition member Fuerza Contra Alzheimer's and highlighted Latino risk factors, prevention strategies, and research engagement opportunities like AlzU.org.

In the News…

The reason we keep fighting is that our work is supported by brave individuals who share their experience with the world. This month, Charles Ogletree, a renown Harvard law professor, announced that he has Alzheimer’s disease:
 
“Ogletree went public with his diagnosis last week during a speech at a Philadelphia conference of the African Methodist Episcopal Church. After the speech, he said, many men came up to thank him and share their stories of being diagnosed with the disease.

‘I’m glad you’re so brave to talk about it,’ Ogletree said the men told him. ‘You’ve given me a sense of what I need to say…I need to talk about my illness as a strength and a wake-up call.’” 

What We Heard That Inspired Us

“We all have a role to play in the fight against Alzheimer’s disease. When women participate in the effort, there is no stopping us. We need to lean on each other.”

- Phyllis Barkman Ferrell, Eli Lilly and Company, in her closing remarks at the Global Alliance on Women’s Brain Health 

 

 

Why Diane Rehm's Book Is a Must Read

Diane Rehm, the treasured NPR host of The Diane Rehm Show (and friend to UsAgainstAlzheimer’s), has written a deeply personal, profoundly moving, incredibly honest book about her life before and after her husband’s death. Diane and John were married for 54 years. Admittedly, they were not all blissful — what marriage is? They loved each other but perhaps were not suited for each other. John, a brilliant lawyer, taciturn and introspective by nature, was happy just to be alone. Diane, though she appreciates solitude, is a gregarious, inquisitive, people person through and through. They would fight — and make up gloriously. But there were times when John would go without speaking to Diane for three weeks at a stretch. (Continue reading on Huffington Post).

The Leader's Guide For Seasons Of Caring

In 1986, when my mom was diagnosed with Alzheimer’s, I had no idea what it was — except that it was a disease and it was fatal. I knew no one who had it or, at the very least, talked about it. So I entered into the enigmatic maze of Alzheimer’s without a clue about how to navigate or what to expect was to come.

What I would have given to have the Leader’s Guide for Seasons of Caring. Forget Updike, Faulkner or even Theodore White — I truly think that Dr. Richard L. Morgan, author of this guide, should be given a Pulitzer Prize. Why? Because this book changes and saves lives. (Continue reading on Huffington Post.)