For the last 22 years, Alzheimer’s has ravaged our family and forever changed my life. I was a veteran broadcast journalist and forced to abandon my career to care for my husband when he was diagnosed with early-onset Alzheimer’s at age 57. Ten years later, I became the caregiver for my 85-year-old mother, who developed Alzheimer’s as well.
Alzheimer’s disease today affects a reported 5.7 million people in the United States and 47 million worldwide. But there are also 16 million caregivers just like me, unintended victims that are not among the official count. The intensity of care over years puts our own health and emotional wellbeing in harm’s way.
Flipping the pain
I’m here to tell you that you’re not alone and that together we can use our collective voice to transform our country’s response to Alzheimer’s. I call it “flipping the pain” and focusing on doing whatever I can to beat Alzheimer’s because stories like mine are still far too common.
As a founding board member of UsAgainstAlzheimer’s (UsA2), I work alongside other advocates committed to ending Alzheimer’s by 2020. UsA2 presses for greater urgency from government, industry and the scientific community to accelerate a cure. We co-launched a global coalition of over 90 organizations that includes persons with dementia and their care partners in direct advocacy efforts, and formed networks of disproportionately affected groups.
For the longest time, the missing piece in Alzheimer’s research was hearing from those who are closest to the disease. That’s why we have just launched the A-LIST, an online cohort of patients and caregivers already 6,000 strong and growing, which was built on the premise that everyone living the Alzheimer’s journey has an important story to tell. We will turn those stories into data to close the knowledge gap between science and the needs of patients and their caregivers by bringing research closer to the bedside through A-LIST surveys that will improve clinical trial design, and guide scientists toward the most impactful treatments. We’re calling it data with soul.
From anecdotes to action
A-LIST is part of a broader effort called AD PACE, Alzheimer’s Disease Patient and Caregiver Engagement. AD PACE is an innovative, patient and caregiver-driven collaboration spanning the public and private sectors. Aimed at identifying and prioritizing the needs and preferences of those living with and affected by Alzheimer’s disease, AD PACE will ensure that the patient and caregiver voice is integrated into drug development, regulatory reviews and reimbursement determinations. The valuable, scientifically rigorous insights gained will help researchers, regulators, policymakers and the health care community to accelerate the search for treatments and cures.
Policy makers and regulators need to hear from people living with Alzheimer’s and those caring for them. The continued pulse of the A-LIST surveys and the anticipated results of the AD-PACE IRB study will provide lawmakers with more than individual anecdotes. This data returns a body of evidence that can be aggregated and understood to give a deeper meaning to the numbers.
There is a unique and powerful opportunity for us to harness our collective pain and validate the details of our lives for the greater good. The strength of our shared experiences can radically improve the lives of those suffering from Alzheimer’s today and impact the estimated 14 million people in the United States that are expected to have Alzheimer’s or another dementia disease by 2050.
I invite you to join the A-LIST community to amplify our collective voice and share meaningful information which represents your diverse needs and complex experiences. Together we will become a powerful collaborative force that will accelerate a cure for Alzheimer’s disease and other dementias.