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.)