COPD Digest (3/31/2016)
Caregiver Action Network continues to be the nation’s leading family caregiver organization working to improve the quality of life and to promote resourcefulness and respect for the more than 90 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age.
WHYY Radio (3/23/2016)
John Schall from the Caregiver Action Network says, early on, state hospital associations--in some states--around the country opposed the new rules. Executives expressed concerns about more mandates and more paperwork—and they claimed their staffers were already doing the tasks required by the CARE Act.
"To their credit, they learned it was not happening nearly as often as they thought it was," Schall said. "They really had to pivot to a position of support from a beginning opposition stance."
Boston Globe (3/07/2016)
These long-overdue steps could also prevent readmissions, which are all too common for elderly patients. “Hospital discharge policies really need to come into the modern age,” said John Schall, chief executive of the nonprofit Caregiver Action Network, based in Washington, D.C. “So many medical errors occur at that point.”
Chicago Tribune (1/12/2016)
"Large businesses have realized it is more costly to them if they lose employees who are caregivers and have to hire and train new employees. It's only a tiny crack in the wall, but it has begun," says John Schall, CEO of the Caregiver Action Network.
For all their efforts, most people don’t identify themselves as caregivers, says John Schall, CEO of the Caregiver Action Network, an advocacy group. “They think it’s just something you do as family, so they have no way of knowing there are resources for them.” But caregiving doesn’t have to be a solo enterprise. If you’re spending time, money and emotional capital providing care, here’s how to find help.
Chicago Tribune (11/05/2015)
Manuel is one of 90 million family caregivers in the U.S., according to the Caregiver Action Network, which spearheads National Family Caregivers Month each November. Those caregivers suffer health, emotional and financial stress, which, without support, puts them and those they care for at risk. "Respite: Care for Caregivers" is the theme of this year's National Family Caregivers Month.
Aging adults should make sure their families know what their wishes are, including whether they expect to age at home and if they want prolonged medical care, said Blayney. "Unless that's communicated, often the children say that's their only choice," she said. It's not a talk you need to have all at once, said John Schall, chief executive of the Caregiver Action Network—both generations may be less on the defensive if they tackle topics individually, as needed.
"We are seeing, without a doubt, that the caregiving need is just growing and growing," said John Schall, chief executive of the Caregiver Action Network.
But the financial effects of caregiving can add up fast. "Nobody ever realizes that not only are they doing this, but it's going to cost money, too," said Schall of the Caregiver Action Network. Even if the care recipient has assets or insurance to cover most expenses, caregivers spend an average $5,500 out of pocket each year, he said. The TD Ameritrade survey puts the annual financial support figure closer to $13,000 to help out mom and $8,500 for dad.
It's less common to see money flow the other way, from a parent to the family member providing care, said Schall. Even if the parent has enough savings for that, doing so creates other problems. "There can be family dynamics where other siblings resent if it's taken out of the family reserves," he said.
The stress of the role can also add to caregivers' health-care bills. Caregivers are more likely to suffer from depression, said Schall, and report higher rates of chronic conditions including heart disease, diabetes and arthritis. "You feel guilty thinking about yourself, but you have to," he said. "It is taking a toll."
Huffington Post (8/08/2015)
If you are handling a parent’s care, you are a caregiver. Being a new caregiver is especially hard. You are doing great — hang in there.
The most important benefit of naming this phase is that it will provide access to so many resources that can help. For example, you have to know you’re a caregiver to know that you can use the AARP’s Caregiving Resource Center or to join the Caregiver Action Network ... both of which are really good places to start in getting a handle on this new phase of life.
Huffington Post (6/22/2015)
In a number of cases, the lawmakers sponsoring so-called CARE (which stands for Caregiver Advise, Record, Enable) bills have personal experience as caregivers. Democratic state Rep. Chris Walsh of Massachusetts, who is sponsoring a CARE bill in his state, tended to his late mother in his home. Now Walsh’s father, who has Alzheimer’s, lives with him.
John Schall, CEO of the Caregiver Action Network, a nonprofit that aims to educate and support caregivers, said experiences such as Walsh’s and Greenlick’s are “kind of a secret driving force” behind the success of CARE laws.
Harvard Health (6/1/2015)
You may become sad when you remember the way your loved one used to be, or you may feel overwhelmed by your responsibilities. Ignoring those feelings may lead to depression. Before that happens, seek help from a mental health counselor or a caregiver support group. If you can’t make it to a support group at a hospital or retirement center, you may consider using social media for support. There are a number of groups on the Internet that offer help. A good place to start is Caring.com (www.caring.com) or the Caregiver Action Network (www.caregiveraction.org).
Chicago Tribune (5/19/2015)
Respite - or short-term temporary relief - for those caring for a family member or other loved one with special needs remains a critical need. Today, more than 67 million individuals in the United States, like Despina, provide care for at least 20 hours per week, sometimes without support, according to Caregiver Action Network.
Orlando Sentinel (3/31/2015)
According to statistics presented by the Caregiver Action Network site, 55 percent of caregivers neglect doctor's appointments, and 23 percent of care providers self-assessed their health as "fair or poor."
Chicago Sun Times (2/5/2015)
“Most care actually occurs in the home,” said John Schall, CEO of the Caregivers Action Network in Washington, D.C. “It isn’t in a hospital or medical clinic. It isn’t in nursing homes. Eighty percent of care occurs in the home. That surprises a lot of people.”
“It’s pretty much an unrecognized issue, which is surprising, given the tens of millions of people who are family caregivers,” said Schall, whose group has a website, caregiveraction.org, designed to help those caring for others.
“Families caregivers themselves don’t immediately self-identify as family caregivers. They don’t know there’s a word or a term. They think of it as just what they do for their family or loved ones.
Huffington Post (12/19/2014)
Where's the money? Start with your parents' latest tax return to get an overview of their assets, says John Schall, CEO of the Caregiver Action Network. Then compile account numbers (savings, checking, credit card, 401(k), etc.) and phone numbers for the customer service line at each banking institution. If they bank online, find out their passwords (or, at the very least, make sure they add this info to a secure document you can access when necessary).
Roll Call (12/18/2014)
These protections are a good, solid start. They advance the congressional aim that powered the ACA’s passage. But more changes are needed to make sure that legislators’ will is duly enacted and that the Affordable Care Act truly lives up to its name.
“We are truly heading towards a caregiving cliff, and we need all the help we can get,” said John Schall, CEO of the Caregiver Action Network, a caregiver advocacy and support group in Washington, D.C.
Washington Post (11/16/2014)
Lisa Winstel, chief operating officer of the Caregiver Action Network, found herself in such a bind a few years ago.
Winstel was working for a company in Olney. Once, after her father had just had surgery in Baltimore and her mother was struggling, she told her boss that she had to leave. Winstel had plenty of leave saved. Nothing urgent was happening at work. “But their response was, ‘If he isn’t dying, sit back down and go after work,’ ” she said. “All of them were in their 20s, and not a single one of them understood what it was like to have aging parents. I did not last there much longer.”
Among the biggest drivers of innovative elder-care benefits, advocates are finding, are CEOs and organizational leaders who are struggling to care for aging parents. “It really starts at the top,” said John Schall, chief executive of the Caregiver Action Network, a nonprofit group that supports family caregivers. “They get religion on what it takes to keep people with elder-care responsibilities in the workforce, and then they push it through the culture.”
USA Today (3/31/2014)
Having the federal data will help providers and officials understand the scope of caregiving needs, suggests John Schall, CEO of the Caregiver Action Network, a family caregiver organization based in Washington, D.C. "This confirms what we always suspected in terms of what those numbers would look like," he says. "That's a fascinating number (8 million) because we never actually had that number." However, Schall says the 8 million figure is still "a minority of people receiving care."
"By far, the lion's share of people getting care are getting it from their family caregivers rather than from paid care workers," he says. "There's no question that family caregiving is really the backbone of the long-term care support services in this country."
Washington Post (3/4/2014)
“We are heading toward the caregiving cliff,” says John Schall, chief executive of the Caregiver Action Network. “Family caregivers are the backbone of long-term care services in this country, and I’m concerned that we won’t have the capacity to meet the demand, especially as the country ages.”
Schall said that in the past three to five years, businesses have begun recognizing the need to help employees who are also caregivers. “We’ve gone from zero miles per hour to 10 miles per hour,” he said, noting that there is still a long way to go. But, he adds, “if businesses are smart, they don’t want to lose employees who are caregivers, because to lose them, hire and train someone else, is actually more costly than providing flexibility.”
Unpaid family caregiving was valued at $450 billion a year by AARP’s Public Policy Institute in 2009, more than the federal and state Medicaid budgets combined. To help family caregivers, legislation was introduced in Congress late last year that would guarantee up to 12 weeks of paid family and medical leave annually that would provide partial wage replacement for working caregivers. “This law is absolutely needed — it’s just the right approach — but given the current climate, I wouldn’t give it great odds,” Schall says.
Caregiving can be lonely—one of the most common feelings that caregivers report is isolation, according to John Schall, chief executive officer of the Caregiver Action Network.
But there's no reason for that to be the case, he told Healthline, pointing to new data that shows that 39 percent of adult Americans care for a loved one, up from 30 percent in 2010.
Most American caregivers are between the ages of 30 and 64 and are still in the work force, according to the Pew Internet and American Life Project. And there's plenty of support available.
That's the message Schall hopes to spread as the United States recognizes National Family Caregivers Month in November, complete with a proclamation issued by President Barack Obama.
Sun Sentinel (10/9/2013)
“The caregiving role takes a tremendous toll on the caregiver’s own health; the stress of caregiving puts the caregiver at greater risk of any number of health problems,” said John Schall, CEO of Caregiver Action Network. “The No. 1 thing is take care of yourself first. Just like when you’re on an airplane, we’ve all heard the flights attendant say that if the oxygen mask drops down, place it on yourself first and then assist your child. You have to take care of yourself first.”
Associations Now (8/28/2013)
One association that has been warily watching the trend for some time is the Caregiver Action Network.
“We always knew it was coming, and we’ve been concerned about it,” said CAN CEO John Schall. “This [report] just emphasizes the reality of the situation that we all knew we were going to have to face in the coming years, and it’s a little bit scary, there’s no question about it.”
To begin addressing the issue, CAN has started reaching out to audiences that typically haven’t identified themselves as caregivers.
“In years past, family caregivers have been predominantly women, but we have noticed that changing,” said Schall. “We are getting to more men, and more men are coming into the caregiver role, because the need is so great.”
PR Newswire (6/27/2013)
"Millions of patients currently suffer from Alzheimer's, a debilitating and heartbreaking disease marked by a decline in overall cognition and function," said John Schall, CEO, Caregiver Action Network. "While there is currently no cure, there is help for patients along the journey, and new treatment options play an important role."
USA Today (6/19/2013)
The growing population of people 65 and older – predicted to jump from 12% in 2000 to 19% by 2020 – isn't the only cause of the increase, said John Schall, CEO of Caregiver Action Network.
Business Insider (6/13/2013)
“Caring for a loved one with moderate to severe Alzheimer’s is a daily challenge, especially when a caregiver is responsible for administering as many as nine prescription medications every day,” said John Schall, President and CEO of the Caregiver Action Network (CAN). “Treatment options that could help lessen this burden may be a welcome relief for the millions of caregivers across the U.S. who are already managing with multiple tasks on a daily basis.”
Huffington Post (1/2/2013)
Medical institutions, federal agencies, pharmaceutical corporations and patient advocacy organizations conduct thousands of clinical trials annually, and according to John Schall, CEO of the Caregiver Action Network, family caregivers are the backbone of the clinical trial experience. "Caregivers predominantly act as care managers," he explains. Among other roles, "they make sure appointments are kept, and they manage medications and medication regimens -- both compliance and adherence."
Chicago Tribune (11/29/2012)
While visiting his parents over a holiday weekend last year, John Schall witnessed the dangerous toll that caregiving can take when you don't take care of yourself.
His mother, the primary caregiver of his 94-year-old father, suffered a stroke that her doctor said was brought on by caregiving stress, Schall said. For the next three weeks that she was in the hospital, Schall became caregiver to both his mom and dad, experiencing for himself the physical and mental burden of the responsibility.
"The prime directive (for the caregiver) is to take care of yourself," Schall said. "It sounds selfish, and you're going to feel guilty about it, but we do know that the caregiving role is tremendously stressful. If something happens to you, who is there to take care of your loved one?"
Washington Post (11/10/2012)
The answer in this crisis isn’t that we rely less on family caregivers. It’s not solely dependent on government assistance. It’s going to take a combination of solutions. For example, legislation introduced this year in the Senate would establish a federal tax credit to assist with the costs of caring for an aging family member. Or, Schall said, we could give Social Security credits for those who become full-time caregivers.
“From a national perspective, if we are serious about reducing health-care costs, we have to invest in family caregiving,” he said.