By Michelle Seitzer
Fifteen million people. 18.1 billion hours. $221 billion dollars.
That's the human cost of Alzheimer's disease, per the newly released Facts & Figures report from the Alzheimer's Association, which states that (in 2015) over 15 million family members and friends provided 18.1 billion hours of unpaid care to people with dementia—a value of more than $221 billion. That means Alzheimer's impacts everyone, even if it's not your immediate family.
Alzheimer's cannot be ignored, and advocates across the country are committed to keeping it on the radar and moving the needle on vital programs and policies. A cure may be months or decades away, but those affected need help and hope now.
Federal Policies Focused on Alzheimer's
Perhaps you don't think Congress cares about Alzheimer's—particularly during an election year. But Katie Macklin, Senior Director of Advocacy and the Executive Director of the Alzheimer's Association's Delaware office, tells us otherwise, offering an overview of key federal policies in the works:
- The HOPE for Alzheimer's Act (S. 857/H.R. 1559): Passage of this bill would provide comprehensive care planning services—for both the individual and his/her caregiver— following a dementia diagnosis. Michael Splaine, a long-time advocate and principal of Splaine Consulting, a healthcare policy firm that specializes in Alzheimer's issues, is optimistic about the HOPE Act—as the bill is supported by nearly half of the Senate and boasts over 200 House co-sponsors.
- The National Alzheimer's Plan is essentially a call to public preparedness for addressing Alzheimer's, with Goal 3 of the Plan focused on caregiver support. Many advocates are voicing the need for state Alzheimer's plans too.
- The Alzheimer's Caregiver Support Act (H.R. 3090) will provide grants to public and non-profit organizations to expand and improve training and support services for families and caregivers of individuals with Alzheimer's disease.
- The RAISE Family Caregivers Act of 2015 (H.R. 3099/S.1719) would facilitate the establishment of a national strategy to address the many issues facing caregivers today, including education and training, long-term services and supports, and financial stability and security.
"As a constituent, you have the right, the responsibility to communicate with your elected official about the issues that matter to you. And if we're not using our voices to ensure that Alzheimer's is made a state and federal policy priority, we're not doing all that we can to ensure that Alzheimer's remains at the forefront of our policymakers' minds," Macklin says.
Anyone affected by Alzheimer's can advocate—and make a difference too. Legislators and their staff keep track of calls and visits, says Bob Marino, who lost both parents to Alzheimer's and has been an active champion for the cause since the year 2000. Often, the best way to get a message through to your member of Congress is to develop a relationship and rapport with their staff. "It really gets stuff done," says Marino.
Also, telling your story gives the disease a personal face, per Macklin. Marino agrees: legislators need to understand the day-to-day consequences and impact of the disease, like downsizing/sacrificing a career, or moving into a relative's home to provide round-the-clock care. "You'll feel better about your voice being heard," he adds.
How to Make Your Voice Heard—and Get the Support You Need
Marino believes the internet is an empowering tool for caregivers, but he advises caution: Since Alzheimer's has become a hot button issue, many sites prey on vulnerable visitors through misinformation. "Be discerning about what you're reading, and go to trusted sources," he says. If you advocate, Marino recommends choosing organizations with whom you have a deep connection.
- Email: Taking action over email is a powerful way to advocate. Macklin encourages caregivers to sign up for the Alzheimer's Association's email action alerts to stay up to date on pertinent legislative actions, and for the opportunity to send requests to their elected officials for support on legislation. For those caught in the "36-hour day" cycle that is Alzheimer's caregiving, the 24-7 nature of email means advocacy can happen anytime, and is not restricted to the hours a legislative office is open.
- Phone: For accessing federal and state programs, like the Family Caregiver Support Program, Macklin suggests caregivers call the Alzheimer's Association's 24/7 Helpline at 800.272.3900. "From here, we can help direct them to the services available in the community appropriate to their circumstance (i.e. federal/state agency)," she says.
- Online: Not a fan of the phone? You can also find out what state agency handles aging, Alzheimer's and caregiving-related issues online. The Eldercare Locator offers several options (via city, zip or topic area search) for finding your local office. "Know what you're entitled to, and get in the pipeline for the process of accessing those resources," Marino recommends.
- In the Community: Support groups are a foundational resource for caregivers navigating all points along the Alzheimer's care path. From meetings in brick-and-mortar buildings to online forums that, like email, afford access at any hour, caregivers can connect with those in similar situations. Search for local support groups covering a wide range of illnesses and issues via this Healthfinder.gov tool.
Mary Reheard and her daughter Linda cared for their husband and father, Harry, while dementia robbed them of the man they knew and loved. "To have someone you love look at you and not know who you are is horrendous," Linda says. In 2002, the day after Harry passed away, the Reheards participated in their first Alzheimer's Association Memory Walk together. "If you're walking, I'm walking," Mary told her daughter. Since then, they have raised $150,000 and visited the US and Pennsylvania state Capitol buildings dozens of times, advocating on behalf of other families dealing with dementia.
"My hope is that no one has to go through what I did without support," says Mary.
Don't face Alzheimer's alone. Reach out for advice and to access the resources you need, and add your voice to the advocacy efforts already underway.
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