According to a survey from the Alzheimer's Foundation of America, concern about stigma and denial of symptoms can, on average, delay a diagnosis of Alzheimer's disease by more than two years after symptoms appear. This is troubling news for patients and caregivers alike.
Spouses, children and siblings are usually the first to notice the symptoms of Alzheimer's disease; they help with the diagnosis because they witness the progression of the disease in their loved ones, playing a pivotal role in caring for the estimated 5 million Americans with the disease. A delay means that patients must wait to receive treatment that could potentially reduce the disease's symptoms.
"Any delay in diagnosis is a setback for people with Alzheimer's disease and their caregivers-and a delay of two years or more is a serious and unnecessary setback," says Eric J. Hall, chief executive officer of the Alzheimer's Foundation of America.
With respect to stigma alone, the survey found important differences between patients and caregivers. When patients were concerned about stigma, diagnosis occurred on average 3.5 years after symptoms appeared, but when caregivers harbored this concern, delay of diagnosis was even more severe, averaging six years.
"While facing Alzheimer's disease is never easy, getting a diagnosis is an essential step to managing and treating the disease. Living with this in silence can isolate people with Alzheimer's disease and their caregivers, leaving them without critical support, resources and proper treatment," adds Hall. "We encourage everyone touched by Alzheimer's disease to reach out for support-help is out there."
In addition to bringing the need to put an end to the stigma associated with the disease to light, the results of the survey show the impact that the disease can have on caregivers, wreaking havoc on families, straining sibling relationships, and leaving caregivers feeling emotionally burdened.
Families Struggle with Caring For Loved Ones on Their Own
Many sibling relationships suffer under the stress of caring for a parent with Alzheimer's disease and the division of caregiving responsibilities. In fact, more than half of caregivers of parents with siblings report that they are the sibling responsible for their parent's care. Sixty-nine percent of caregivers surveyed report that they want more help from family and friends.
More Support,
Education Needed
Caregivers indicate that more assistance in certain areas could ease the caregiving strain, most notably, assistance with day-to-day caregiving activities, financial support, emotional support, and time for themselves.
Two in five caregivers surveyed report that lack of knowledge about the disease is a barrier to diagnosis, suggesting that more education is needed. Additionally, while the majority of caregivers report that they are aware of medications that may slow the progression of symptoms, only half of caregivers surveyed are aware of the opportunity for combination therapy.
Alzheimer's disease is a progressive brain disorder that gradually destroys a person's memory and ability to learn, reason, make judgments, communicate and carry out daily activities.
Alzheimer's disease currently strikes approximately 5 million Americans, with an estimated one in 10 persons over age 65 and nearly half of those 85 or older suffering from the disease. In fact, published reports project that this number could more than triple to over 16 million people in the United States by 2050.
Support is available and medications exist that can slow the progression of symptoms of Alzheimer's disease. For more information, call (toll-free) 866-AFA-8484 or visit www.alzfdn.org or www.alzheimersonline.com. |
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