Stigma May Slow Alzheimer's Diagnosis

March 21, 2006 -- Stigma about Alzheimer's disease may delay Alzheimer's diagnosis by up to six years, according to a new survey.

The online survey included 539 people who are currently caring for a parent or spouse with Alzheimer's. Among the findings:

• Patients typically had Alzheimer's symptoms for two years and saw two doctors before getting diagnosed with Alzheimer's.
• Caregivers' concern about Alzheimer's stigma delayed diagnosis by up to six years.

Stigma wasn't the only hurdle. Many caregivers mentioned their lack of knowledge about Alzheimer's disease and/or the patient's resistance to seeing the doctor as delaying diagnosis.

Some caregivers said they didn't want to face the possibility that something was wrong with their loved one. Overall, more than half of caregivers (57%) mentioned stigma or denial, the survey shows.

The survey was done in January and February 2006 by Harris Interactive for the Alzheimer's Foundation of America with funding by Forest Pharmaceuticals.

Snapshot of Caregivers

Here's a look at the caregivers who took the survey:

• Two-thirds were women.
• Caregivers' average age was 56.
• Alzheimer's patients being cared for were typically women in their 70s.

More than half of the caregivers said they had been the one to bring up the topic of Alzheimer's disease. Nearly half (45%) reported not being surprised by the diagnosis.

When asked how they felt when their loved one was diagnosed with Alzheimer's, caregivers mainly said they felt sad. They also mentioned feeling angry, scared, or relieved.

Caregivers noting concern about Alzheimer's stigma were more likely to say they had felt angry or scared at the time of diagnosis. But those caregivers were also more likely to now consider themselves very or extremely knowledgeable about Alzheimer's.

"They are facing the disease head-on and are informing themselves about treatment options for their loved one," the report states.

Strength in Compassion

Nearly all caregivers described themselves as at least somewhat patient (92%), strong (97%), and compassionate (98%). But that didn't mean they wanted to go it alone.

Most caregivers (69%) indicated wanting more help from family and friends, especially if they were caring for a parent with Alzheimer's disease. The top areas for help were caregiving activities, financial support, and emotional support. Caregivers also voiced a need for more time for themselves.

Slightly more than half of the caregivers (53%) noted that their loved one hadn't made any plans for long-term care, the survey also shows.