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Stigma and Denial Delay Alzheimer's Diagnosis by Years

  • April 7th, 2006

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). The delay in diagnosis is a serious setback that can rob caregivers and people with Alzheimer's of critical support, resources, and proper treatment, the AFA says.

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).

'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.'

The survey also examined differences in how caregivers respond to the burden of caregiving and reach out for help. The study found that many sibling relationships suffer under the stress of caring for a parent with Alzheimer's disease and the division of caregiving responsibilities.

Still, the majority of caregivers surveyed report finding new, positive qualities in themselves during the process of caregiving: roughly two-thirds (64 percent) 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.

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.

For more details on the survey, go to: http://www.alzfdn.org/survey.shtml

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Last Modified: 04/07/2006
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