The scope of the challenge
A new report estimates that the incidence of Alzheimer’s disease will triple in coming decades, both globally and in the U.S., driven in large part by an aging global population.
Although some research softens those predictions and suggests the rate may fall as populations become healthier and better-educated, Alzheimer’s is already the 6th leading cause of death in the U.S.
In 2013, researchers estimate the direct costs of caring for Americans with Alzheimer’s at $203 billion; by 2050 they say that number could rise to $1.2 trillion.
In 2012, 15.4 million unpaid caregivers provided 17.5 billion hours of care, with an estimated value of around $216 billion. About 30 percent of today’s family caregivers fall into the “sandwich” category, simultaneously caring for an adult parent with dementia and dependent children.
These caregivers perform demanding, undervalued work. Family caregivers must sacrifice time, opportunity, and salary to care for their loved ones with Alzheimer’s, often at the expense of other relationships and the continuing education needed for career advancement.
This complex disease with its numerous inextricable social, economic, and political aspects, is bearing down on the global community, and experts say families, governments, and economies are ill-prepared to confront it.
Cooperative Extension promotes awareness, health literacy, preparation, collaboration
Throughout the U.S., Cooperative Extension professionals address eldercare challenges with information, workshops, and conferences, and by partnering with a variety of organizations to provide the awareness, advocacy, information, and support families and their elders need.
Jatunn Gibson, assistant director of family and consumer sciences and formerly a gerontology specialist with Alabama Cooperative Extension System at Auburn University, says she sought master’s and Ph.D. degrees in public health, following a passion for caregiving that hearkens back to her days as an 8-year-old growing up a rural community, helping care for her great-grandmother who’d been paralyzed by a stroke.
“We didn't call it caregiving back then,” she says. “We didn’t have programs and institutional care for old and disabled people. It was just commitment to family. Everybody had to pitch in.”
Experts agree that both professional and unpaid family caregivers need information, training, and support to manage the complex dimensions of Alzheimer’s and other dementias. To that end, “Here in Alabama, we've developed a 12-hour training for informal caregivers,” says Gibson.
“Also, Extension is one of few organizations that has a presence in every county in Alabama. By partnering with them, we can help promote the work of agencies that don’t have the funds to advertise their services.
“For example, we've become part of the Alabama Lifespan Respite Coalition. We also partnered with the Alabama 211 information system, after realizing that if it’s the place people are supposed to go for information, and people don’t even know about it, it doesn’t exist.”
“Alzheimer’s is a huge economic challenge,” says Gibson. “Businesses and policy makers are going to have to wake up to the financial impacts as more and more workers, especially women, have to leave the workforce or limit their hours to make time for providing eldercare.
“There’s a huge need for health literacy for everyone involved. If you don’t know enough to understand what’s happening, you can’t make informed decisions.”
Gibson recommends that people with concerns about aging relatives obtain legal powers of attorney that will make it possible to make decisions about healthcare and financial matters if dementia progresses.
Like Alabama, Texas Extension partners with community colleges, area agencies on aging, continuing education programs, and eldercare advocacy organizations.
Because of his academic background in the biological aspects of aging, Crocker holds out hope for medical breakthroughs that can slow the onset or the progress of the disease.
“Alzheimer’s involves actual atrophy of the brain,” he says. “The number one risk factor is advancing age. At age 65, there’s a 10 percent chance of developing Alzheimer’s. By age 80, it’s around 50 percent. Slowing the onset or progress by 10 years would make a huge difference,” reducing both the direct costs and caregiving burdens, he says.
Like Gibson, Crocker stresses the importance of acting sooner rather than later to address concerns about aging relatives. “It’s important to talk to health professionals about your concerns, if only to rule out any of the many things that can masquerade as dementia. We have a program that teaches you how to have that conversation with your doctor.
“And Baby Boomers need to come to terms with their own aging. They've been socialized to look to technology for solving all their problems,” says Crocker. Making plans, talking to family members and health providers, designating powers of attorney, filing advance directives, “that’s for old people. Boomers are reluctant to think of themselves as ever growing old.”
Briefing on World Alzheimer Report
World Alzheimer Report 20013 (full report)
2013 Alzheimer’s Disease Facts and Figures (full report) A statistical resource for U.S. data related to Alzheimer’s disease
20013 Alzheimer’s disease facts and figures (Infographic)
eXtension Alzheimer fact sheets
Family Caregiviers: Wired for Health (Pew research)
Alzheimer’s “breakthrough” could mark turning point
Released October 14, 2013
Writer: Peg Boyles, eXtension, firstname.lastname@example.org