About 52 million Americans are, or have been, caregivers for a family member, according to government statistics. And with Alzheimer's currently striking an estimated 5.1 million people, many of these family caregivers must cope with the arduous task of caring for a loved one with the brain-wasting disease. But who will care for the caregivers?
"There's enormous burnout and stress that comes with this disease," says Carol Steinberg, executive vice president of the Alzheimer's Foundation of America (AFA). "Caregivers of people with Alzheimer's disease are more prone to physical and mental degeneration than other types of caregivers."
The not-for-profit, Manhattan-based AFA offers support and tips for caregivers on its website along with educational materials, programs and events. For families reeling after a loved one is diagnosed with Alzheimer's, AFA can help ease the haze of fear and uncertainty.
"AFA surveys have shown that the majority of people feel they're not getting as much education and resources at the point of diagnosis as they need or want," Steinberg says. Some of this is because physicians don't have the time or aren't properly trained to fully explain the prognosis of the disease, she says.
At AFA's website (alzfdn.org), caregivers get advice from professionals and other family caregivers. And at Inspire.com, there's a caregiver support network with AFA discussion boards (bit.ly/inspire-afa), with family caregivers who exchange stories and ideas. AFA also offers free advice from licensed social workers, who will answer family caregivers' questions and offer guidance. "They can connect with our social workers via email, via a toll-free call-in line [866-232-8484] and even via Skype and live chat," Steinberg says.
Also, AFA publishes a quarterly magazine, Care Advantage. It offers advice and delves deeper into the frustrations and guilt often felt by caregivers. "We address the issues that people are afraid or embarrassed to talk about," says Steinberg, also the editor of the magazine. You can read Care Advantage online or request a free print subscription at AFA's website.
AFA is sponsoring a free Care Conference, 8 a.m.-4:15 p.m. Friday at the Crowne Plaza hotel in Times Square. The all-day event features several workshops, including discussions on strategies to maximize care while avoiding burnout. Breakfast and lunch will be served. There will be on-site respite care where loved ones with Alzheimer's will be cared for during the conference. For more information or to register, call 866-232-8484 or go to alzfdn.org.