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Alzheimer’s disease touches whole families

June 11, 2014
Opinion Piece
Alzheimer's disease has touched millions of American families. However, most of us are probably unaware of the statistics behind the disease — and the significant public health threat it poses to our nation.

In the U.S., someone develops Alzheimer's every 67 seconds. The Alzheimer's Association estimates as many as 16 million Americans over age 65 could suffer from Alzheimer's by 2050. It is now the fifth leading cause of death in my home state of California.

June is Alzheimer's and Brain Awareness Month. It is a time to acknowledge that Alzheimer's doesn't just strike an individual — it is a family disease. Right now nearly 15 million people, mostly family members, provide unpaid care for individuals with Alzheimer's or dementia, a market value of more than $220.2 billion. In California alone, about 1.5 million unpaid caregivers grapple with the tremendous challenges of Alzheimer's disease or dementia every day.

As compared to caregivers for other diseases, Alzheimer's caregivers disproportionately report being forced to miss work, reduce work hours, quit or change jobs due to caregiving demands. They are more likely to experience financial hardship, report health difficulties, experience emotional stress and suffer from sleep disturbance.

These are just some of the reasons why Congress must pass my legislation, the Alzheimer's Caregiver Support Act, which authorizes grants to public and nonprofit organizations to expand training and support services for families and caregivers of Alzheimer's patients. With the majority of Alzheimer's patients living at home under the care of family and friends, it is important that we ensure they have access to the training and resources needed to provide proper care.

The families and communities facing Alzheimer's also must deal with the difficult problem of wandering. According to the Alzheimer's Association, more than 60 percent of Alzheimer's patients are likely to wander away from home. In addition to distracting from law enforcement, wanderers are vulnerable to dehydration, weather conditions, traffic hazards and individuals who prey on vulnerable seniors. In fact, the Alzheimer's Association estimates that up to 50 percent of wandering Alzheimer's patients will become seriously injured or die if they are not found within 24 hours of their departure from home.

To combat this, I have introduced legislation to reauthorize and improve the Missing Alzheimer's Disease Patient Alert Program, a small but effective Department of Justice program that helps local communities and law enforcement quickly identify persons with Alzheimer's disease who wander or are missing and reunite them with their families. The program is a valuable resource for first responders, and it enables law enforcement officers to focus their attention on other security concerns in our communities.

Moreover, the program is an unqualified success. It enabled the Alzheimer's Association to establish a national registry of more than 180,000 at-risk individuals, which has reunited more than 18,000 wanderers with their families, according to 2011 data. Known as Safe Return, the registry has a 98 percent success rate in recovering enrollees reported missing, with 88 percent found within the first four hours of being reported missing.

The Missing Alzheimer's Disease Patient Alert Program has also funded a variety of technological methods to address wandering. These include initiatives like Project Lifesaver, which provides wanderers with personalized wristbands that emit a tracking signal, reducing search times to minutes. A grant from the program allowed Project Lifesaver to expand dramatically and, as of May 2014, it has facilitated more than 2,841 rescues.

Congress originally authorized $900,000 per year in appropriations for the Missing Alzheimer's Disease Patient Alert Program in 1996. While the program has continued to receive funding on a year-to-year basis since then, the funding has not increased with the need. My legislation would authorize a modest $5 million per year for this life-saving program, a small amount of money to spend for a disease that is expected to cost the federal government $150 billion in Medicare and Medicaid expenses in 2014 alone.

Of course, nothing would be more valuable for Alzheimer's patients, their families, caregivers and communities than a cure for this terrible disease.  To that end, we must significantly expand the federal government's insufficient investment in Alzheimer's research. It is essential that Congress appropriate robust funding for cutting-edge research at the National Institutes of Health (NIH).

The private sector also has a role to play in funding Alzheimer's research, as do donations from concerned individuals. A simple way for Congress to encourage the public to contribute is to enact previously introduced legislation that would require the U.S. Postal Service to issue and sell a semi-postal stamp, with the proceeds helping to fund Alzheimer's research at the NIH.

As we continue to search for a cure, our nation is at a critical crossroads that requires decisive action to assure the safety and welfare of the millions of Americans with Alzheimer's disease and dementia. Together, let us commit to take every possible action to improve treatments for Alzheimer's patients, support caregivers, and invest in research to find a cure for this disease.

Waters has represented Southern California congressional districts since 1991 and sits on the Financial Services Committee. She is also co-chair of the bipartisan, bicameral Congressional Task Force on Alzheimer's Disease.