Alzheimer’s is a devastating disease that takes a tremendous personal and economic toll on both the individual and the family. As someone whose family has experienced the pain of Alzheimer’s, I know that there is no more helpless feeling than to watch the progression of this dreadful disease. It is an agonizing experience to look into the eyes of a loved one only to receive a confused look in return.
In Maine, an estimated 30,000 people have been diagnosed with some form of this disease and tragically, the number continues to grow. As Senate Co-chair of the Congressional Task Force on Alzheimer’s Disease, I frequently meet with Maine families who have experienced this terrible degenerative disease first-hand. Whether visiting one of my offices in Maine or traveling to Washington, these families carry the same message with them: This is a disease that can strike any family at any time, and we must do more to raise awareness of the symptoms, educate doctors to help facilitate early diagnosis, and increase research efforts to find better treatments and ultimately a cure.
While Alzheimer’s is tragic at any age, it is particularly poignant when it strikes early, disabling otherwise healthy individuals in the prime of their lives. The Congressional Task Force on Alzheimer’s Disease recently hosted an educational briefing on “early-onset” Alzheimer’s disease, where we heard a touching personal story from Karen Stram of Dresden. Karen traveled from Maine to Washington to share her experience with her husband Bob’s battle with the disease. She detailed the many challenges that she and her family have faced in caring for an early-onset victim. She recounted her husband’s painful process of trying to manage his work as a radiologist, as friends and loved ones struggled to understand what was causing his difficulty with tasks that had previously been second nature to him. She described how hard it was for them to receive an accurate diagnosis, as Bob was treated for depression and psychological problems, all the while being assured by their physician that it was not Alzheimer’s. Finally, at age 56, Bob was correctly diagnosed with early-onset Alzheimer’s and began treatments to stem the disease’s degenerative effects. Sadly, Bob and Karen’s story is not unique. Misdiagnosis is alarmingly typical among early-onset patients.
Of all the people who have Alzheimer’s, less than ten percent develop symptoms before age 65. When a younger person goes to their doctor with symptoms of dementia, the doctor may not even consider Alzheimer’s as a possibility because the disease is so closely associated with aging. This can lead to difficulties in obtaining an accurate diagnosis and result in significant delays in receiving treatment.
Many early-onset victims are still working when their symptoms begin to emerge. Over time, they may lose their ability to fulfill their usual responsibilities, but the real reason for the change may not be understood by their employers or co-workers – or even by themselves. Some people with early onset leave their jobs voluntarily or are fired before getting a diagnosis. This can have a huge financial impact on themselves and their families, particularly if it means a loss of disability or health benefits, and they are too young to qualify for Medicare.
Early-onset Alzheimer’s can create additional problems simply because it is so unexpected and because most of the potentially helpful programs and services are targeted to older people.
Some headway has been made in the last fifteen years by our talented scientists and researchers in arriving at treatments to slow the progress of the disease’s degenerative effects, and many exciting clinical trials are in progress. Still, much more work must be done if we are to see the prognosis of Alzheimer’s disease shift from terminal to treatable. This is no time to take our foot off the accelerator.
It is through raising awareness about the significant challenges and hardships facing people like Bob and Karen Stram and other families who are living with Alzheimer’s that we will generate increased support for the research that is necessary to find better treatments and ultimately a cure for this devastating disease.
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