FOR IMMEDIATE RELEASE | March 21, 2006
Stigma and Denial Delay Diagnosis of Alzheimer's Disease
“Serious and Unnecessary Setback” Can Rob Caregivers and People with Alzheimer's Disease
New York, NY — Concern about stigma and denial of symptoms can delay a diagnosis of Alzheimer's disease by more than two years (28.7 months) on average after symptoms appear, according to a new survey from the Alzheimer's Foundation of America (AFA). When people with Alzheimer's disease are concerned about stigma, a diagnosis of Alzheimer's disease occurred on average 3.5 years (40.1 months) after symptoms appear. When caregivers are concerned about stigma, delay of diagnosis is even more severe, averaging 6 years (71.4 months). The survey was conducted by Harris Interactive ® on behalf of AFA, a national nonprofit organization providing care and services to individuals with Alzheimer's disease and related dementias, and their families.
“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,” said Eric J. Hall, chief executive officer of the Alzheimer's Foundation of America. “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. We encourage everyone touched by Alzheimer's disease to reach out for support – help is out there.”
FAMILIES FEEL ABANDONED, 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. More than half of caregivers of parents, with siblings (60%), report that they are the only one of their siblings responsible for their parent's care. Many of these respondents report that relationships with siblings deteriorated after a parent was diagnosed (86% of siblings were somewhat or very close prior to diagnosis vs. 75% post-diagnosis).
MORE EDUCATION, SUPPORT NEEDED
Lack of knowledge about the disease is a barrier to diagnosis for two in five caregivers surveyed (40%), suggesting that more education is needed. While the majority (92%) of caregivers report that they are aware of medications that may slow the progression of symptoms, only half (51%) of caregivers surveyed are aware of the opportunity for combination therapy.
“If you notice memory problems or any other possible warning signs, such as agitation, restlessness, disorientation, or difficulty performing regular tasks, make an appointment with your doctor,” said Beth Safirstein, M.D., co-president/medical director and practicing physician at the MD Clinical/MD Clinical Trials Foundation, Inc., Hallandale Beach, FL. “Diagnosis and treatment are essential because there are treatments available, including combination therapy, that have shown to potentially help maintain a person's ability to think clearly and perform everyday tasks for a longer period of time than if left untreated.”
CAREGIVERS EMERGE STRONGER, MORE COMPASSIONATE
Moreover, the majority of caregivers surveyed report finding new, positive qualities in themselves during the process of caregiving: roughly two-thirds (64%) of caregivers report they have become a more compassionate person since caring for a loved one with Alzheimer's. Additionally, 76 percent of caregivers state they have learned that they are stronger than they thought since caring for someone with the disease.
Additional key survey findings can be found at www.alzfdn.org .
About the Survey
About Alzheimer's Disease
About the Alzheimer's Foundation of America
About Harris Interactive ®
Harris Interactive serves clients worldwide through its United States, Europe (www.harrisinteractive.com/europe) and Asia offices, its wholly-owned subsidiary Novatris in Paris, France (www.novatris.com), and through an independent global network of affiliate market research companies.
1 The data were weighted to represent the general population of U.S. Alzheimer's disease adult caregivers with respect to age, gender, education, income, region and propensity to be online. The weighting parameters were derived through previous research conducted by Harris Interactive, as well as from statistics generated by the Current Population Survey. In theory, with probability samples of this size, one could say with 95 percent certainty that the overall results have a sampling error of plus or minus 4 percentage points. Sampling error for the sub-samples of caregivers of parents (310), caregivers of parents with siblings (250), caregivers of spouses (138), those who mentioned fear of stigma and denial as a reason for a delay in diagnosis (279) and those who did not mention fear of stigma or denial as a reason for a delay in diagnosis (260) is higher and varies. This online sample is not a probability sample.
Contact: Carol Steinberg