Alzheimer's Caregivers Can Fight the Disease

Caring for someone with Alzheimer’s disease is challenging under the best of circumstances. Across the United States, more than five million people ages 65 and older are currently living with Alzheimer’s disease (AD). And over 15 million more Americans – family members, friends, neighbors and volunteers – provide unpaid care for a loved one with AD.
What makes this disease particularly heartbreaking is feeling helpless against it – there’s no way to prevent Alzheimer’s, keep it from progressing, or cure it. But there are ways for caregivers, and the patients and loved ones they care for, to help in the fight against Alzheimer’s. One of the most important is through the act of volunteering in Alzheimer’s research studies.
“I am a wife as well as a full-time caregiver to my husband who was diagnosed at the age of 65. It was only eight years into our marriage,” said Elisabeth Paine. “One of the most important roles I have taken on during this journey is as an Alzheimer’s study partner.” Paine has been volunteering with her husband, who recently participated in a clinical trial at Yale University.
“Caregivers are a crucial part of the solution to finding better treatments faster. We can help enroll our AD patients, and give them and ourselves access to the best medical specialists in the field,” said Paine.
One study which is helping spur new discoveries is being slowed by a lack of AD patient volunteers. The Alzheimer’s Disease Neuroimaging Initiative (ADNI) is the largest and most comprehensive research effort on AD to date, and is offering the data it gathers to scientists around the globe to inform and speed new treatments. There are a number of ongoing clinical trials, and many more about to start, aimed at slowing disease progression with drug treatment. All of these trials are using the diagnostic methods developed through ADNI. If the availability of ADNI data is slowed down, it slows down the entire field.
The study is active at 55 research centers in U.S. and is currently seeking to recruit clinical trial volunteers between the ages of 55 and 90 with mild to moderate Alzheimer’s disease (AD).
“Effective medical research is our best hope in Alzheimer’s. And participating in studies is one important way caregivers can help,” said Dr. Michael Weiner, primary investigator of ADNI, as well as a caregiver to his 96-year old mother with AD. “It takes everybody’s involvement – researchers, doctors, patients, friends, family members, trial participants and caregivers – to fight this disease.”
To volunteer or learn more about the ADNI study, contact the National Institute on Aging’s Alzheimer’s Disease Education and Referral (ADEAR) Center at (800) 438-4380, or visit www.adni-info.org.