Alzheimer’s Association Advocacy Forum
April 24, 2012
It is difficult to describe the impact Alzheimer’s disease has on an individual and his family. What might start with your loved one accidentally missing a few credit card payments eventually leads to her inability to dress or bathe herself. The ripple effect of this disease touches friends, families and communities in ways that are difficult to quantify. Alzheimer’s is one of the leading causes of death in our country and it’s irreversible. There are no survivors.
That is what we know.
What we don’t know, is how to stop it.
In the century since Dr. Alois Alzheimer discovered the disease we’ve learned a lot about it. We’ve learned how it attacks the brain. How it can be passed genetically within families. And how it can lead to other dangerous ailments.
But even as research has progressed and we continued to learn more, Alzheimer’s never attracted sufficient attention and resources.
This happened for a few reasons.
For one, memory loss has always been associated with aging. And as medical advances have allowed us to live longer, we’ve assumed that more intense signs of aging just came with the territory. For some families the feeling was, ‘Mom is just getting older, no reason to see a doctor’.
At the same time, many health care providers either didn’t know much about Alzheimer’s or felt like giving a diagnosis would be devastating for families when nothing much could be done medically to help. All of this had led many to think about Alzheimer’s more as a naturally occurring condition and not the devastating disease we now know it is.
And then there is the social aspect. Whether it’s from a grandmother repeating the same question to a dinner guest again and again, an uncle who has fallen behind on the electric bill, or a parent with unexplained flashes of anger, friends and families can feel embarrassed. Their instinct to protect their loved one may lead them to close off the world around them.
When someone feels like he’s lost his dignity – when a family feels like they’ve lost hope – we tend not to ask for help. We often stay inside. We hide.
And as a result, people with the disease and their families have often been left to carry the burden themselves.
I hear from families all the time who are caring for loved ones. They write or call or approach our staff at listening sessions. They often want to tell their story and ask us to do more. Sometimes they just want to share their sadness and frustration with anyone willing to listen.
A woman caring for her mother told me “my father and I are completely exhausted, but we want to keep our mother home with us until the end.”
Another man who eventually was forced to place his mother in an assisted living facility wrote that the move has been upsetting for the family and then added “most days she hates me even though I know it’s the Alzheimer’s.”
Today, an estimated 5.1 million Americans suffer from Alzheimer’s disease.
And this isn’t just a health issue. Alzheimer’s care costs are large and the costs to our economy are huge in terms of work lost by caregivers who must tend to loved ones.
Even worse, we know that the prevalence of the disease is growing. As our population ages, the number of people stricken with this disease could double or more by 2050.
It’s not an exaggeration to call Alzheimer’s disease a public health crisis in our country. And it’s one that can no longer exist in the shadows.
Since the Alzheimer’s Association was founded in 1980 you’ve raised up your voices for millions of Americans who didn’t have the time, energy or strength to speak for themselves.
And you’ve done more than call attention. You’ve changed the face of Alzheimer’s by involving people struck with the disease in your advocacy and your organization’s leadership. You’ve restored the dignity that families felt they had lost. You’ve made it possible for individuals and families to speak out and ask for help. In the process you’ve made it impossible for political figures to ignore the disease. And you’ve funded research critical to searching for a cure and helping families to cope with the disease.
During this time, government has been a natural partner for the work you do – whether it’s been policymakers working with you to move legislation or NIH researchers teaming up to carry out testing and trials.
These efforts are making a difference. Clinical trials have found signs of hope in pilots that can preserve normal activity in people with moderate Alzheimer’s. And just this year new discoveries allowed us to carefully track the way certain proteins associated with Alzheimer’s spread in the brain. This breakthrough could allow us to identify the disease in its earliest stages – a key tool in stopping it.
But there were barriers standing in the way of our progress.
First, there was the lack of understanding and attention among the public. But it went further than that. Doctors and nurses didn’t know enough about the disease either. It wasn’t part of their training. And even if they diagnosed it, they often didn’t know the best way to help individuals and families manage the disease. All of this made it hard for families to get help.
And second, we lacked the clear goals that are so important to marking progress and judging results. There was a lack of accountability.
This wasn’t the right way to fight Alzheimer’s disease. And so, our administration has taken action to move Alzheimer’s out of the shadows and make it a national priority.
The first thing we did was enact the bipartisan National Alzheimer’s Project Act.
It creates an expert advisory council on Alzheimer’s to advise our department on how to reduce the burden of the disease on individuals and their families right now. The law also calls on the council to advise our department in the creation of a national strategy that will guide our fight against Alzheimer’s for years to come.
Over the last 6 months we’ve released drafts of this strategy and collected and incorporated valuable input and comments from leaders and advocates like you and groups like the Alzheimer’s Association. In May, we will release the final version. But it isn’t just another strategy to sit on the shelf. This strategy is going to be a living, breathing document that will help us meet our goal to prevent and effectively treat Alzheimer’s disease by 2025.
And our goals don’t stop there. The plan will include concrete steps to improve education and outreach to the public and the health care community around Alzheimer’s. It will expand support for patients and caregivers in the community. And it will change the way we collect data to give us a clearer picture of the disease’s impact on patients, their families and the health care system.
Every year we are going to update the plan. We’re going to make sure it reflects the latest science and breakthroughs. We’re going to reevaluate, refocus and make sure we’re getting results.
These goals and actions came out of our conversations with you and our participation in many of the hundreds of listening sessions you held around the country.
But there was something else that you also made very clear -- the fact that we couldn’t wait until May.
That’s why this February President Obama made his historic $156 million commitment to combat Alzheimer’s disease.
As part of this commitment, we immediately moved $50 million within NIH for research to identify effective treatments, delay of disease progression, and ultimately, even prevention of Alzheimer’s altogether. Another $80 million in Alzheimer’s research funding is proposed for next year’s budget. This is money we can use for efforts ranging from identifying the molecular roots of Alzheimer’s to plans for speeding the path between potential therapies and clinical trials.
We also heard from you that we needed more than just research dollars. We needed education and outreach and additional caregiver supports. So the remaining $26 million over the next two years is going to those efforts that will help us get a jumpstart on the National Plan. This means a targeted awareness campaign to help people with Alzheimer’s and their caregivers learn about resources that can help them manage the disease. And it means immediate additional support for caregivers like enhanced dementia capability at the state, local and tribal level as well as community-based counseling and assistance.
Finally, you told us that a key part of our outreach needed to focus on health care providers.
That’s why this summer we’re sending additional funds to Geriatric Education Centers around the country to develop curricula and free training on Alzheimer’s and dementia for health professionals. The centers will put this information in the hands of professional organizations and accreditation bodies that can spread it quickly to providers. And a centralized website will carry videos and fact sheets that providers can easily access. These resources will help providers recognize the symptoms of Alzheimer’s and improve the care that people with the disease receive.
A short time ago, the fight against Alzheimer’s had uncertain funding, limited accountability and no coordinated partnership with the nation’s Alzheimer’s community.
Today, we’ve made an historic investment of funds, a 15-year commitment to the prevention and treatment of Alzheimer’s and we’re building a partnership among government, advocates, providers and the public that will finally bring Alzheimer’s fully into the national conscious.
These actions are the cornerstones of an ambitious and aggressive agenda to improve the lives of those with Alzheimer’s disease. And we’re not stopping there.
We’ve lifted the ban on embryonic stem cell research which opens the doors to new treatments for Alzheimer’s.
We’ve launched a major effort to improve access to home and community based services for seniors and people with disabilities to allow them to remain in their communities as long as possible – an effort particularly important for those in the early and moderate stages of the disease.
And of course we passed the Affordable Care Act which is strengthening Medicare, helping doctors improve care coordination and making screenings for diseases like Alzheimer’s available at no cost to beneficiaries.
We’ve done all of this because we share your sense of urgency. We know that the time to take on Alzheimer’s disease is not after the next budget, not after the next election, but now.
We can’t delay our work to find treatments and a cure. Nor can we delay our work to provide critical support to Americans struck by the disease and those who care for them every day.
Too many people with Alzheimer’s felt ashamed and suffered alone. Too many families felt like they had nowhere to turn for help.
We still have a lot of work to do, but working together we have found the resources, energy and focus to bring Alzheimer’s out of the shadows. In the work to end the suffering of Alzheimer’s, the Obama Administration is your partner, and we’re in it for the long haul.