Did you know that only 45 percent of people with Alzheimer's or their caregivers say they were told their Alzheimer’s diagnosis by their doctor*? This low diagnosis percentage remains the reality, despite studies finding several benefits - including allowing for better decision-making, medical care and future planning - in clearly explaining a diagnosis of dementia to the affected patient.
One way the Alzheimer’s Association is helping to connect patients with the community resources they need is through the Early-Stage Advisor program, made up of Alzheimer’s patients across the country who share their stories, support advocacy efforts and educate others about the disease and the help and resources available for people living with Alzheimer’s and their caregivers.
Tom Oestreicher of Illinois is one member of the Early-Stage Advisor Program:
Describe your role as a member of the Alzheimer’s Association Early-Stage Advisory Group?
As an early-stage advisor, I work with the Alzheimer’s Association to help raise awareness about Alzheimer’s disease and other dementias. By sharing my story including the warning signs, diagnostic process and day-to-day challenges of living with the disease, I help educate others about the experience and reduce the stigma associated with a diagnosis. In this role, I also help to raise awareness of the Alzheimer’s Association for families affected and the urgent need for widespread, public support for research funding that can advance treatments and ultimately find a cure for Alzheimer’s.
What drew you to join this advisory group?
I was nominated as a candidate for this group by the Alzheimer’s Association – Greater Illinois Chapter. For the past two years my wife and I worked closely with the chapter, giving speeches, engaging in panels, participating in Walk to End Alzheimer’s events, and supporting various advocacy efforts. The chapter encouraged me to continue these efforts at a national level. My current position affords me the opportunity to share my experiences with a much wider audience.
What has been your greatest accomplishment to date being a member of the Early-Stage Advisory group?
In the short time I have been a national advisor, I participated in reviewing and providing feedback on the Alzheimer’s Association new national “First Survivor” TV ad campaign which began airing in August. In addition, I am working with other advisors to fine-tune documents that clinical researchers use with participants to share testing results. Our goal is to make sure scientific testing results are easier for lay persons to understand. As someone living with Alzheimer’s, I can provide a unique perspective that people working with the Alzheimer’s care and research should consider when implementing their work.
What is the biggest misconception people have about Alzheimer’s?
I have encountered a wide range of reactions from friends, acquaintances, and even family when I inform them of my Alzheimer diagnosis. People have told me that, "You don't look like you have Alzheimer's." I guess I don't know what I'm supposed to look like! I explain that Alzheimer's is a progressive disease. Changes are usually mild at first and progress over time. Many people seem to think that when you’re diagnosed with Alzheimer's you lose your memory all at once – but that’s certainly not the case. I am choosing to use this time to educate others and to rally more people in support of people living with Alzheimer’s and toward finding a cure. The general public, at least in my experience, is not aware of the severity of the Alzheimer epidemic. Almost everyone I encounter believes there is a treatment or even a cure on the immediate horizon for this disease. They don't seem to understand that there are no Alzheimer survivors.
What are your hopes for the future of the Alzheimer’s Association?
My hope, of course, is to find a cure for this terrible disease. Until that day arrives, the Alzheimer’s Association and advisors like myself are dedicated to advancing care and support for those struggling with Alzheimer's and other dementias, and advocating for greater public and government awareness so we can intensify current efforts aimed at putting an end to Alzheimer’s.
Earlier this year, the CVS Health Foundation announced a $550,000 commitment to the Alzheimer's Association to support expanded provider education and diagnosis resources for individuals living with Alzheimer's disease and caregivers.
*According to the Alzheimer's Association's 2015 Alzheimer's Disease Facts and Figures report