The first Alzheimer’s survivor: Advocates have goal in mind

warningsignsAn Alzheimer’s diagnosis seems to come with finality. But advocates are looking to the day when we can say we’ve had our first Alzheimer’s survivor.

“We knew that we needed to raise concern for the disease, and we’ve done that. We knew that we needed to raise awareness about the association, about being a dementia-friendly community, what that meant. And now we need people to understand, this is solvable. There are answers out there,” said Sue Friedman, the president and CEO of the Central and Western chapter of the Alzheimer’s Association, on this week’s Viewpoints on WVPT.

The Alzheimer’s Association is best-known for its annual fund-raising walks. The local chapter sponsors eight across Central Virginia and Western Virginia, beginning next month.

But there is much going on behind the scenes. The local chapter sponsors 44 support groups through the region, and also offers care consultations with a gerontologist or social worker, “which is the most valued service that we offer,” said Friedman, because that consultation can help a family understand what Alzheimer’s is and create a road map for what will happen six months out, a year out and beyond.

loveyourbrain“What are those issues that we know to be coming, and how can we best prepare ourselves?” Friedman said.

And that focus includes paying attention to the needs of caregivers. A sad fact that we know from medical research: one in three caregivers precedes their loved one with Alzheimer’s in death.

“We know the price for families, aside from individual patients, for families who are coping with it, for communities that are coping with it, for our society to try to be prepared for it. As we look more into it, this is something that is more and more demanding,” said Dr. Rhonda Zingraff, the associate dean in the College of Health & Behavioral Studies and the director of Institute for Innovation in Health & Human Services at James Madison University.

The issue is particularly acute for married couples where the primary person delivering care is the spouse.

“When you’re looking at a married couple where the spouse is vanishing, and these are people who have spent decades together, being intimately close in a relationship like no other, and then you have to try to make accommodations for the fact that that person is just vanishing, but gradually. The change and the challenge that happens is devastating, and we haven’t done well as a society in recognizing what that means,” Zingraff said.

The caregiver burden is “burning people out,” said Zingraff, noting research on the risk of health associated with what it takes to be a caregiver.

“You almost have to begin to have a system of care that sees both the Alzheimer’s patient and the caregiver as needing ongoing counseling, support and healthcare services. And that’s just not something we have lined up right now,” Zingraff said.

 

Walk to End Alzheimer’s

  • Walk_to_End_Alzheimers2Greater Augusta – Sept. 10
  • Tri-County (Orange, Madison, Culpeper)  – Sept. 17
  • Danville – Sept. 24
  • Roanoke – Oct. 1
  • Charlottesville – Oct. 8
  • Lynchburg – Oct. 15
  • Harrisonburg – Oct. 22
  • New River Valley – Oct. 29

More information: alz.org/cwva.

 

Viewpoints

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Story by Chris Graham


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