2021 - 1,830 Media Mentions
Real Clear Policy (12/24/2021)
CAN CEO, John Schall, writes about how medicare negotiations will hurt patients. "At my organization, Caregiver Action Network, we know just how much difference new and improved treatments can make"That's precisely why we, and so many other patient advocacy organizations, are adamantly opposed to this ill-considered plan to introduce price controls."
Institute for Patient Access (11/24/2021)
John Schall, CEO of Caregiver Action Network, discusses the role that caregivers play in virtual and in-person care. In some ways, medical care during the pandemic has become easier. You can use your phone or computer to log into a telehealth portal, and then see and talk with a doctor to get needed care. But there are some drawbacks. Not everyone has the Internet access need for video appointments and not everything can be done on video. Caregivers can also be cut out of telehealth appointments if the telehealth platform only allows for two participants--the doctor and the patient. "Caregivers often facilitate communication between health care providers and patients," Schall said. "And they help carryout treatment plans between visits, so their presence to receive those instruction and ask questions, if necessary, is vital."
In a piece on Scripps for National Family Caregiver Month, a representative from CAN's Caregiver Help Desk talked about how important it is that caregivers not lose their identities. That's what #CaregiverAnd is all about--celebrating who you are outside of caregiving. People often lose their identity when they become a caregiver, but you can be a caregiver and also something else. As one participant in the campaign said, "Take care of your loved one, but still do something else that you enjoy."
New data shows the great emotional toll that pandemic has had on family caregivers. “Even in non-pandemic times, the pressures of caregiving can be far-reaching and negatively impact the financial, physical and emotional well-being of the entire family, and these data underscore how the pandemic has only increased these pressures, particularly for cancer caregivers,” said Lisa Winstel, Chief Operating Officer of Caregiver Action Network and a member of the Embracing Carers^® advisory board. “As we start to round the corner with COVID-19, it’s critical that we don’t lose sight of the fact that for many caregivers, the responsibilities and accompanying stress will not abate.”
The Caregivers Voice (11/10/2021)
Caregiver Action Network’s (CAN) campaign this year, echoes awareness of the person beyond the role or disease. Years ago, when speaking of a disability we’d say, “handicapped,” or “senile.” Today, we say, “person with a disability” or “person with dementia.” Person first, disease or role, second. CAN’s #CaregiverAnd campaign acknowledges that caregivers are more than just people who provide care. We are people who have careers, volunteer commitments, and more.
National Family Caregivers Month Satellite Media Tour (11/8/2021)
CAN CEO, John Schall, participated in a satellite media tour to discuss the significance of National Family Caregivers Month and promote this year's campaign #CaregiverAnd. Interviews were aired in media markets across the country including: Cincy Lifestyle (WCPO - ABC; Cincinnatti, OH); Inside South Florida (WSFL-TV; Miami, FL); PA Live (WBRE - NBC; Wilkes Barre, PA); The Morning Blend (WFTX - FOX; Fort Myers, FL); Mountain Connections (Park City TV; Salt Lake City, UT); PH17 Morning News (WPHL - MNT; Philadelphia, PA); WSAW-TV (Wausau, WI); The Jet Set (National); AM Buffalo (WKBW - ABC; Buffalo, NY); and Colorado's Best (KDVR - FOX; Denver, CO).
Simply Medical Blog (11/8/2021)
National Family Caregivers Month originated from the work of the Caregiver Action Network (CAN), a non-profit focused on engaging, supporting, empowering, and providing resources to the caregiving community. The organization started promoting national recognition of family caregivers in 1994.
WUSA-9 (CBS, Washington, DC) (11/3/2021)
In a discussion of how families have struggled with caregiving during the pandemic, CAN COO, Lisa Winstel, described how the number of hours family caregivers are providing care has increased dramatically, leading to stress and burnout. She suggested that they call the CAN Caregiver Help Desk. "Family caregivers need to know that they're seen and heard, you're not alone," she said. "Take care of yourself first and we'll help you take care of your loved one."
BBC World News (10/16/2021)
CAN CEO, John Schall, was interviewed on the BBC World News program "Talking Business" about what business can do to help caregivers. He was asked if small businesses can really afford to support caregivers.
"They absolutely can," said Schall. "What caregivers ultimately want is information, some resources to turn to, and someone to listen to them--which can be provided at fairly low cost." "If you have supports in place that help caregivers reduce their own stress, make sure they're paying attention to their own health, make it easier for them to figure out how, when, and where to look for paid home care, you're reducing their stress."
Brain & Life (August/September, 2021)
Family caregivers for someone with a rare disease face unique challenges, but can also find a special network of doctors and other caregivers. People with a rare disease typically see one specialist after another before getting an accurate diagnosis. "Their caregivers “often feel like they're living in a medical mystery show,” says John Schall, CEO of Caregiver Action Network. “They feel uncertain about the future and how to manage their loved one's condition.” Luckily, patients with rare diseases and their caregivers can usually find at least one association or foundation dedicated to their particular disorder. These nonprofits help educate families and patients, provide materials and resources, host conferences, fundraise for research, and offer support groups.
The Covid-19 pandemic undermined mental health on a massive scale, with anxiety or depression symptoms hitting one in three people in the US early in the outbreak. It's been especially difficult for family caregivers. A study found that early in the pandemic, “family caregivers reported higher anxiety, depression, fatigue, sleep disturbance ... and increased financial worries,” compared to non-caregivers. Caregivers said the pandemic “increased the effort involved in providing care” and made it “more physically, emotionally, and financially difficult.” The decreased availability of support services made the situation more difficult. “Before, you could get your cousin to come over for four hours on Saturday so you could go see a movie, just to escape it and recharge your batteries,” said John Schall, CEO of Caregiver Action Network. "During the pandemic, that kind of respite, those breaks, haven’t existed.”
Before Covid-19, the US was lagging behind other countries in its support for informal, home-based care. Catching up would be a first step toward helping caregivers recover — for example, through tax credits, an expansion of federal family leave policies, and direct pay to informal caregivers.
Look into other organizations that seek to support people in the labor force with caregiving responsibilities, such as Caregiver Action Network, Family Caregiver Alliance, National Alliance for Caregiving and more.
Thirteen percent of caregivers became so during the pandemic, making them particularly ill-prepared for their new responsibilities--but there is help out there. Caregiver Action Network (CAN) provides training sessions on administrative tasks caregivers must familiarize themselves with, such as filing for do-not-resuscitate orders (DNR) or power of attorney. And because more care is being pushed to the home, they also offer sessions on how to handle the more sophisticated tasks doctors were previously doing, such as inserting IVs and catheters and managing wound care.
“In any of our lives, financial issues are one of our biggest stressors anyway,” said John Schall, chief executive officer of Caregiver Action Network. “Now you’re taking on this huge stress of the financial difficulties of your loved one—situations that you did not create, and that you don’t even have all the necessary tools to attack at your fingertips. It takes a tremendous toll mentally and emotionally on family caregivers. There’s no way to underestimate that.”
Despite this, family caregivers can benefit from a wealth of resources on the subject. Schall offered tips to help you help your loved one manage finances.
Covid-19 has put more young adults into unpaid caregiving roles. In the new Global Carer Well-Being Index from Embracing Carers, 25% of Gen Z and Millennial caregivers were in caregiving roles for the first time during the pandemic, compared with 15% of Gen X and Boomer caregivers. Overall, 20% of caregivers surveyed were new to caregiving and 60% of them were Gen Z or Millennials. The pandemic has made caregiving more difficult for everyone, but it's especially hard on young people. In the survey, 72% of Gen Z caregivers in the U.S. said their emotional or mental health had worsened.
"The stereotypical image of a family caregiver—a 48-year old woman with school-aged children and aging parents—needs to change," said Lisa Winstel, chief operating officer of Caregiver Action Network, an advisor to Embracing Carers. “It's incumbent on us to be more inclusive when we discuss who's a caregiver.” "A 24-year old caregiver who moves home after graduate school instead of finding a job needs just as much support as a 65-year old woman caring for her husband with COPD," said Winstel. But young caregivers often don’t get the support they need. Of 18 to 34-year-olds surveyed, 95% said they could use help navigating the system to make sure they are providing proper care.
Being a family caregiver is never easy, but it's gotten more difficult since the start of the pandemic. In the new EMD Serono Global Carer Well-Being Index, 64% of caregivers said caregiving has gotten harder during the pandemic and 20% reported becoming caregivers for the first time. This is taking an emotional toll. The majority of caregivers (89%) said they’ve put the needs of the person they care for above their own. The pandemic makes it hard for caregivers to get a break. Overall, 23% cited the inability to take a break as the biggest challenge they’ve faced. Burnout is common and taking care of yourself often is overlooked. Winstel says that caregivers should be protected. “We are the front-line health worker in the home for our loved ones.”
2020 - 1,510 Media Mentions
The Mighty (12/4/2020)
Caregivers play an important role, but it can also lead to burnout and mental health issues if you’re not taking enough time to address your needs. Whether you are caring for a child, parent or another loved one, the same rules apply. Caregivers need support too, from mental health to practical resources.
Founded in 2017, Caregiver Action Network has a plethora of resources for the more than 65 million Americans who care for loved ones with chronic conditions, disabilities, complex medical conditions and aging loved ones.
Oprah Magazine (12/2/2020)
It’s easy for caregivers to feel alone and overwhelmed, but there are many organizations ready to help. Caregiver Action Network: Ask about free resources such as education and peer support. CAN offers pandemic-related advice, too.
Scripps National (11/25/2020)
Thanksgiving is National Family Health History Day. “I think it's particularly important this year in the COVID landscape ,because the last thing we want are additional conditions for a person to face if they're already at exposure for COVID,” said John Schall, CEO of the Caregiver Action Network. It's not an easy conversation to have, but the holidays can make the topic easier to bring up. “When you make it clear that it's really in everybody's best interest that we know what diseases that the aunts and uncles and grandparents and everybody faced is really to everybody's benefit, then maybe it's a little easier to have the conversation,” said Schall.
News 5-Cleveland (11/24/2020)
The Covid-19 pandemic is shifting caregiving responsibilities. More millennials are taking on this responsibility now. They're becoming a greater percentage of what's known as the "sandwich generation." Those are people who are caring for both their own kids and their aging parents. Nearly half of the so-called "sandwich generation" expect to be a caregiver in some capacity for six or more years.
"The added financial strain is one concern; out of pocket expenses can be about a thousand dollars a month,," said John Schall, CEO of Caregiver Action Network. There's also the concern about the mental toll. “With millennial generation caregivers, you may not be thinking about depression, you know, at that age, but the fact is the sheer stress of the role of being a family caregiver increases that risk of depression twice as often,” said Schall.
Market Screener (11/19/2020)
EMD Serono announced the first ever Carer Well-Being Index, launched during National Family Caregivers Month, which surveyed 750 Americans across various demographics who are providing unpaid care for a loved one with a long-term illness, physical disability, or cognitive/mental condition to learn how the coronavirus pandemic has impacted their physical, emotional and financial health.
'Ultimately, practical steps for immediate and long-term relief is key,' said Lisa Winstel, Chief Operating Officer, Caregiver Action Network. 'We need more training, resources and financial support across the public and private sector. Together, we need to do more to ensure that caregivers have the resources and information they need to improve their quality of life.'
Signal Group (11/18/2020)
John Schall, CAN CEO, discussed how telehealth can be a tool for caregivers during COVID-19 and after. "Even after COVID-19 is behind us, I think it’s highly likely that telehealth could very well be the new reality for patients and family caregivers, much in the way that teleworking has become the new normal for millions of Americans, " Schall said. There does need to be some policy changes made to ensure telehealth use for the long-term. "As policymakers consider extending and further expanding telehealth resources, they need to consider family caregivers," he said. "Also, health insurance needs to continue to pay for telehealth visits and allow family caregivers to connect to virtual visits from a third location if necessary."
The Willits News (10/14/2020)
North Coast Opportunities is pleased to announce the receipt of a $150,000 grant from Community Care Corps for their volunteer program, Good Company--which was developed to decrease feelings of loneliness, improve health and nutrition, and increase the safety and wellbeing of socially isolated, older adults.
“We are proud to implement the brand-new National Volunteer Care Corps and make Community Care Corps grants in this first year of the program,” said John Schall, CEO of Caregiver Action Network. “There is no question that there is tremendous need for local nonmedical volunteer assistance for seniors, people with disabilities, and family caregivers – especially in light of the COVID-19 pandemic.
San Francisco Chronicle (10/25/2020)
Two out of every 5 adults has some family caregiving responsibility. It's a challenge for them to see that they need care as well. "Family caregivers end up being very focused on their loved one... making sure that the care for the loved one is as good as it can get," said John Schall, CEO of Caregiver Action Network. "They're not really thinking about their own emotional needs, their own ability to get support and where to get it." "If you're not caring for yourself, you'r going to get sick and then we're going to have two people to care for," Schall said.
Since the start of the pandemic, CAN's Caregiver Help Desk has seen an increase in calls and 1 in three of those calls is related to a challenge raised by the pandemic. "Aging in place has gone from being a desire, a wish, to almost a mandate or something that really has to happen because families are just afraid to have their elderly loved ones put in a nursing home,” said John Schall, CEO of the Caregiver Action Network. "We need more training and financial support for the caregivers in this situation."
Announcement about Community Care Corps, a new national volunteer program looking to help caregivers and older adults. CAN CEO, John Schall said that there was already a great need and demand for volunteer assistance for older adults and caregivers before the pandemic, but that need has grown even more now. "Every family caregiver needs a chance occasionally to take a break and recharge their batteries--they may feel guilty about doing so, but they shouldn't," Schall said. "Unless you re-energize, there's no way you can be strong enough to care for your loved one. A volunteer who can stay with your loved one for 4 hours on a Saturday or once a month makes all the difference."
Very Well Health (9/3/2020)
CAN was featured in a list of the best caregiver support groups. In the listing, they reference the Caregiver Help Desk, CAN's social media pages, the Caregiver forum, caregiving stories, a resource list of organizations and foundations that specialize in supporting all types of caregivers, and the Family Caregiver Toolbox which offers resources on everything from respite care to current clinical trials, as well as how to deal with depression, and more.
As of 2009, there were nearly 3.5 million spousal caregivers, according to an AARP study. With people living longer, that number is expected to grow. The number who have Alzheimer’s disease has grown, too. Today, 5.8 million Americans live with Alzheimer’s; by 2050, that rate is slated to triple.
And while being a caregiver to a parent is tough, when it’s your husband or wife, “In addition to all the usual challenges that come with caregiving responsibilities, it’s also a big change in the marriage relationship,” says John Schall, CEO of Caregiver Action Network. “There are new issues of dependency and it can get in the way of intimacy. The marriage dynamic has to adapt to a new normal.”
The Baltimore Sun (7/17/2020)
The St. Agnes Hospital Foundation announces receipt of a grant to set up a network of volunteers to chaperone the elderly and people with disabilities in getting to and from non-emergency medical appointments. The federal grant of $181,145 through the Community Care Corps will enable the foundation to create the St. Agnes Trusted Ride program.
In the grant competition, Community Care Corps received hundreds of applications from communities in 45 states. The proposal from the St. Agnes Foundation received some of the highest scores across the board. Each application was evaluated by a number of reviewers, including Caregiver Action Network CEO John Schall, who deemed St. Agnes to be the cream of the crop.
Beloit Daily News (7/14/2020)
Community Care Corps has announced that Retired & Senior Volunteer Program of Rock County (RSVP) was one of 23 grant recipients chosen nationwide as part of a new program to help older adults, persons with disabilities and family caregivers. Retired and Senior Volunteer Program of Rock County’s model volunteer program will offer transportation services to assist older adults who have lost the ability to drive themselves and reduce their sense of social isolation.
Inside NJ (6/4/2020)
U.S. Senator Cory Booker (D-NJ) today introduced legislation that expands protections for family caregivers from discrimination by their employers. The Protecting Family Caregivers from Discrimination Act would prohibit employers from firing, demoting, mistreating, refusing to hire, or taking other adverse employment action against workers who are caregivers for their loved ones.
“With more and more family caregivers having to juggle work with their caregiving responsibilities, they need protection from discrimination in the workplace,” John Schall, CEO, Caregiver Action Network said. “Senator Booker’s proposed legislation is an idea whose time has come. On behalf of tens of millions of working family caregivers, we strongly and enthusiastically call for enactment of the Protecting Family Caregivers from Discrimination Act of 2020.”
The American Independent (4/29/2020)
Home caregivers have been marginalized for a long time, but COVID-19 is bringing to light a major flaw in the caregiving system. "Caregivers are making very low wages. You can see why they might think exposure to COVID-19 is not worth the risk for them and their families. On the other side of it, patients don't want to take the risk of caregivers coming into the house right now," said John Schall, CEO of Caregiver Action Network (CAN). Schall says that unpaid caregiving within families is difficult even in the best of times because most family caregivers have other jobs and other family members, and they have to add full-time patient management on top of their other responsibilities: "Add coronavirus on top of all that and it gets awfully challenging."
Family caregiving is also expensive. Schall estimates the out-of-pocket cost is $10,000 per year for a family caregiver to purchase things such as grab bars for showers, adult undergarments, medications, stairlifts, and a whole host of supplies. To address this, CAN is supporting a bipartisan bill introduced by Rep. Katie Porter (D-CA) and Sen. Corey Gardner (R-CO) that will enable family caregivers to use funds from health savings accounts for expenses related to in-home caregiving.
Next Avenue (3/23/2020)
Caring for a loved one with Alzheimer’s or other dementia is hard enough during normal times--without a global health crisis. "It takes a lot more attention and responsibility from family caregivers to make sure all of the home’s occupants are safely cohabiting," said Lisa Winstel, chief operating officer of Caregiver Action Network. "If an older adult lives with you, this is probably a really good time to review your household policies about policing things that are left around and safety issues.”
"Whether they live with you or on their own, routine is also very important for everyone involved," Winstel says. “Anything you can do to just keep the routine as consistent as possible, minimizing disruptions as much as possible, will help.”
2019 - 1,860 Media Mentions
Comcast Newsmakers (11/26/2019)
CAN CEO John Schall said there are a couple of reasons why family caregivers don't seek help. They think that no one is able to take care of their loved one as well as they can. "That's probably true, but you still need some help, you need a few hourse off so you can recharge our batteries," he said. "Also, frankly, family caregivers don't know where to look for help, they don't know that help is available." "That's what we're trying to do, make sure that family caregivers realize that there is information and help out there," he said. "That's what we're trying to do as a non-profit organization."
Scripps National (11/21/2019)
Caregiver Action Network launched a hotline specifically for caregivers. They can provide information on how to handle things like doctor’s appointments, medication or finances. They provide emotional support as well. “Caregivers themselves go through feelings of depression, or anger, because this is not what you signed up for,” says John Schall, the CEO of the Caregiver Action Network. “Or guilt that you're not giving the proper amount of care to a loved one.”
Future of Personal Health (11/12/2019)
The theme for National Family Caregivers Month this year is "Caregiving Around the Clock." Family caregivers give so much, even to the detriment of their own health, career and family. Creating a balance between caring for a loved one and caring for yourself is difficult. And often, caring for yourself takes a back seat. "We celebrate National Family Caregivers Month each November as a time to recognize and honor family caregivers across the country," said John Schall, CEO of Caregiver Action Network. "It’s why we’re here for caregivers around the clock, just like they are for their loved ones."
Washington Post (11/12/2019)
The Administration for Community Living, part of the Department of Health and Human Services, is taking steps to establish a National Volunteer Care Corps. Volunteers will serve “nonmedical” needs of older adults and younger adults with disabilities. The goal is to discover innovative, effective programs that offer services to diverse communities (geographic, racial and ethnic) and that can be replicated in multiple locations.
“We want to be able to say, ‘Here are the services that people really need, and these are the types of things that work well for specific populations,’ ” said John Schall, chief executive officer of Caregiver Action Network. Services could include preparing meals, taking seniors to church or home-based tech support for computer users, among many other possibilities.
Future of Personal Health (10/25/2019)
Currently, a record 5.5 million Americans live with Alzheimer’s disease. This number will jump to seven million in the next decade. And, for every person with Alzheimer’s, a team of unpaid caregivers struggles to provide support. Caregivers often feel isolated and lost, and those with Alzheimer’s might not receive the care they both need and deserve. Rowan University/Rutgers-Camden Board of Governors (RURCBOG) and Otsuka America Pharmaceutical, Inc. recognized this urgent need, and, on May 9, 2017, they collaborated to launch the first-ever Alzheimer’s Journey Coordinator Certificate Program. According to Kris Kolluri, CEO of RURCBOG, the program will to provide residents of Camden and southern New Jersey with a “unique and innovative approach to improving the quality of life of those affected by Alzheimer’s, especially low-income and minority populations who struggle to access health care resources.”
At the program’s launch, Lisa Winstel, COO of the Caregiver Action Network, emphasized how the program could provide much-needed relief for caregivers. According to Winstel, caregivers face “a significantly increased rate of depression, an increased rate of chronic diseases, because they just can’t face going to another doctor’s office, just can’t take more time off work for their own medical appointment.”
Future of Personal Health (8/15/2019)
Your caregiving role might have started gradually and one day you found yourself a de facto care coordinator. This is the right time to learn to become an effective family health care coordinator. Take the time now to learn about medication management and create a medication list that works for you and your loved one. This is also a great time to work with your loved one to make sure all of the necessary paperwork is in place--advance directives, living wills, powers of attorney. All this can be done before your loved one needs daily care.
At the program’s launch, Lisa Winstel, COO of the Caregiver Action Network, emphasized how the program could provide much-needed relief for caregivers. According to Winstel, caregivers face “a significantly increased rate of depression, an increased rate of chronic diseases, because they just can’t face going to another doctor’s office, just can’t take more time off work for their own medical appointment.”
W7 News (7/29/2019)
Data from the US Department of Health and Human Services shows that approximately 70 percent of American ages 65 today require long-term health insurance. For most Americans, care insurance is a necessity to pay for in-home services and adult pay. Basic needs such as bathing, eating and dressing are covered in this insurance, just the same with healthcare services.
According to the Caregiver Action Network, value for caregiver services each year is approximately $375 billion. As the price for care services increases each year, more retirees require long-term care insurance to afford expenses later.
The San Diego Union-Tribune (5/28/2019)
This article about older adults traveling, gave several tips for older adults to be health-smart while traveling.
“The good news is that airlines, cruises and resorts are better equipped than ever to deal with older adults who need help,” says John Schall, chief executive officer of Caregiver Action Network, a nonprofit for family caregivers.
KMOX Radio (5/17/2019)
The founder of St. Louis-based ''At Home Care" Carlita Vasser says, whether you are a friend of family member, you can have a realistic conversation with the caregiver to help them accept that they can't do this alone. "They need to understand that wearing themselves into the ground is defeating the purpose of caring for that loved one. They should consider who is going to be there to take care of mother or father if I'm not healthy."
The Caregiver Action Network also suggests that caregivers watch out for signs of depression. learn how to effectively communicate with doctors, organize and update the medical and legal documents and give yourself credit for the job you are doing.
Get News (5/7/2019)
Ongoing concerns over affordable healthcare, combined with the aging Baby Boomer population, has created a caregiver crisis in America as more families face the prospect of having to care for an aging parent.
According to statistics compiled by the Caregiver Action Network, nearly 1 in 4 Americans – more than 65 million people – provide care for a chronically ill, disabled, or aged family member or friend in any given year. That number is expected to rise as the Baby Boomer generation grows older.
When you’re responsible for the care of a loved one, thoughts of escaping to a white sand beach, a fun, bustling city or even just a nearby charming little town may seem out of the realm of possibility. But caregiving experts agree that planning for leisure time is important.
“Family caregivers are twice as likely to suffer depression, and are at increased risk for many chronic conditions. That risk can be a lot costlier than taking some time away to recharge,” says John Schall, CEO of Caregiver Action Network.
2018 - 2,200+ Media Mentions
Vail Daily (11/12/2018)
November has been designated as National Family Caregivers Month, and Eagle Valley Senior Life and other elder-serving organizations in Eagle County would like to recognize and express appreciation to those individuals who provide care for elderly or disabled family members 24 hours a day, seven days a week and 365 days per year.
The Caregiver Action Network (the National Family Caregivers Association) began promoting national recognition of family caregivers in 1994. President Clinton signed the first National Family Caregivers Month Presidential Proclamation in 1997 and every president since has followed suit by issuing an annual proclamation recognizing and honoring family caregivers each November.
Healthcare Dive (11/7/2018)
Supportive information addressing the challenges faced by family caregivers of older adults will be highlighted on MerckManuals.com, an online medical reference, for National Family Caregivers Month in November.
The themed content, which will be featured on the consumer landing page through Friday, November 16, will include an infographic from the Caregiver Action Network on the “Top 10 Tips for Family Caregivers.”
Guru Focus (9/5/2018)
Alkermes today announced that the company is now accepting applications for the 3rd annual ALKERMES INSPIRATION GRANTS® program. The competitive program will award up to $1 million in grants to various organizations for the implementation of innovative, high-impact and replicable programs designed to make a positive difference in the lives of people affected by mental health and substance use disorders.
"Our 2017 ALKERMES INSPIRATION GRANT made a tremendous difference in the impact the Caregiver Action Network can make for families affected by mental health issues. Family caregiving is never easy and mental illness presents additional challenges. We have always wanted to directly reach more family members of those with mental health issues, but simply didn't have the resources," said John Schall, Chief Executive Officer of Caregiver Action Network. "The ALKERMES INSPIRATION GRANTS program allowed us to offer thousands of families practical advice and information through our new four-part Blueprint for Family Caregivers of Loved Ones with Mental Health Issues electronic guidebook."
US News & World Report (8/23/2018)
As life spans lengthen, adult children like Hall in their 60s and 70s are increasingly caring for frail, older parents — something few people plan for.
Though older caregivers get scant attention, resources are available. Over the years, Hall has shared caregiving ups and downs at CareGiving.com — a significant source of information and comfort. Across the country, local chapters of Area Agencies on Aging run caregiver support programs, as do organizations such as the Caregiver Action Network, the Family Caregiver Alliance, the National Alliance for Caregiving and Parenting Our Parents, an outfit focused on adult children who become caregivers.
Press Release Point (7/18/2018)
Avanir Pharmaceuticals, Inc. and Caregiver Action Network (CAN) today announced a partnership to provide caregivers with educational resources to help them adjust to their new role. Avanir has partnered with CAN as part of its commitment to educating patients, doctors, and caregivers about symptoms and management options for PseudoBulbar Affect (PBA) – an often ignored, misdiagnosed, and undertreated condition that has a significant impact on patients already enduring life-changing medical illnesses.
“Communication is key in any relationship. And that’s also true for the relationship between doctors, patients, and their family caregivers,” said John Schall, Chief Executive Officer of CAN. “That’s why we are excited to partner with Avanir to provide educational resources to help caregivers better understand PBA and be confident in their ability to articulate their patient’s symptoms so that physicians may appropriately manage their care.”
Women's Day (2/12/2018)
It’s easy to wish away forgetfulness, hoping it’s nothing serious. But that can actually make things worse. So many women have this superpower: the ability to pretend absolutely nothing is wrong and focus on everyone else. But trying to gloss over symptoms while also praying they’re nothing serious can be dangerous to your health—particularly when it comes to mental changes that could point to Alzheimer’s disease or other forms of dementia.
"Hiding symptoms and living in fear of what they could mean is understandable, but exactly the opposite of what experts wish people did," says John Schall, CEO of Caregiver Action Network. "There are advantages in preparing to manage Alzheimer’s. Benefits to consider include: you might be able to take medication, you find relief, you ease the burden.
The Washington Post (1/9/2018)
An estimated 8.4 million Americans are caregivers to adult loved ones with a mental illness, most often a son or daughter, parent, spouse or sibling.
“Caregiving situations for siblings pack an extra emotional punch for the caregiver,” said John Schall, who runs the Caregiver Action Network, a nonprofit organization that supports people providing care to loved ones. “It’s not unusual for us to think at some point of being the caregiver for our elderly parents, but it’s a whole different thing to be a caregiver for a sibling who we always thought of as equals.”
2017 - 1,580 Media Mentions
Twenty percent of family caregivers have to take unpaid time off from work because of their caregiving responsibilities, a 2021 AARP analysis found. A 2011 Met Life study estimated the average lifetime cost to caregivers in lost wages and reduced pension and Social Security benefits at $304,000 — that’s $388,000 in today’s dollars. And that doesn’t count the more than $7,200 that most caregivers spend out of pocket each year, on average, on housing, health care and other needs for loved ones in their care, according to the AARP report.
Research by the Society for Human Resource Management has found that it costs six to nine months’ salary to replace an employee, so it’s not surprising that many employers believe it’s less expensive to make an accommodation. “Saying to your employer, ‘I’m a family caregiver,’ is not as taboo as it once was,” says Lisa Winstel, chief operating officer at the Caregiver Action Network. “Employers are realizing that many employees juggle both work and caregiving responsibilities — caring for spouses, parents or even children with significant health needs.”
Senior Advisor (11/27/2017)
What do family caregivers need most? It might be training for the medical tasks they often perform. A new AP-NORC poll found that while most caregivers say their work is rewarding, fewer than half say they’ve had enough training to confidently take on tasks like catheter care, wound care and other medical needs. If you’re a family caregiver, where can you go for more information and training?
Caregiver Action Network has produced a series of videos that show you exactly how to perform basic healthcare tasks.
The Somerville Times (11/26/2017)
Caregiver Action Network (CAN) provides free education, support, and resources to family caregivers, chose “Caregiving Around the Clock” as this year’s theme to highlight how many people juggle caregiving and other important facets of their lives, such as raising children and working.
Adult foster care programs were created to offset some of these challenges, including the strain of balancing full-time work and caregiving. According to CAN, six out of 10 family caregivers work full- or part-time, and many of them say they have to cut back on working hours, take a leave of absence, or quit their job entirely.
Caregiving for an elderly parent or relative is especially hard for the nation's seven million long-distance caregivers.
Caregiving for an elderly parent or relative is hard on anyone. But for the nation's seven million long-distance caregivers, "there's an extra layer of stress," says John Schall, who heads the Caregiver Action Network, a Washington, D.C., nonprofit. He's a long-distance caregiver himself, too, for his mother in Livonia, Mich. He calls it "the worry factor"—you're not there to see for yourself if the parent ate a good lunch, got out for a walk or took medicine correctly. You wake up in the middle of the night, anxious about missing something. "The not knowing is even a greater stress," Schall says.
U.S. News & World Report (11/17/2017)
This month, we celebrate National Family Caregivers Month. Started by the Caregiver Action Network (formerly National Family Caregivers Association), it's a time to heighten awareness of the tireless and heroic work millions of family caregivers do daily. A recent study by Merrill Lynch (surveying over 2,000 family caregivers in partnership with Age Wave) reports caregivers for people with dementia spent an average of 171 hours providing care a month. Twenty-four percent have been providing care for over five years. Many of these caregivers also work outside the home.
Marine Corps Community (11/8/2017)
Did you know the Caregiver Action Network reports that 6 out of 10 family caregivers work full- or part-time jobs? That gives a whole new meaning to the November 2017 National Family Caregivers Month theme, ‘Caregiving Around the Clock’. Here are a few tips for taking care of yourself, while giving the best care to your family members: Join a support group: Contact your local EFMP office to find out which support groups are in your area or how to create one for families with similar situations. Practice Self Care: Taking care of yourself is vital in caring for your loved one. Contact your local EFMP office for a list of organizations who offer respite care or assistance building a natural support network for opportunities to recharge! Take advantage of resources available to you: Your local EFMP office has a lending library and a list of resources that are available for check-out. Build a binder: Having all your family members documents in one place can reduce stress. Contact your local EFMP office for one-on-one support or offered trainings on how to build your binder. Give yourself credit!
Rehab Management (11/7/2017)
Merck KGaA, Darmstadt, Germany, and EMD Serono have launched Embracing Carers, a global initiative that aims to bring recognition to the challenges faced by unpaid caregivers, as well as their need for support.
Lisa Winstel, chief operating officer, Caregiver Action Network, adds that, “Data from the Embracing Carers International Survey clearly shows that we still need to provide the recognition that caregivers deserve and the significant support they need.”
Brain and Life (October/November 2017)
An article addressing the scenario in which a family caregiver dies before their loved one and how to prepare for it notes that it is well known that caregivers often neglect their own physical and mental health. Lisa Winstel, CAN COO cited a study that more than one in 10 family caregivers reported that caregiving had caused their physical health to deteriorate. Almost 72 percent of family caregivers said they don't see their own doctors as often as they should, and 55 percent said they skip their own medical appointments. Still, many families are caught off guard when designated caregivers die. Because caregivers focus on the needs of others, they may not have created their own advance directive or living will. They may never have considered what would happen to their loved ones if they, the healthy ones, became incapacitated.
MedCity News (10/13/2017)
The sixth annual BIO Patient and Health Advocacy Summit included a panel discussion on how employers supporting caregivers is as important as caregivers supporting the patients they’re taking care of. Lisa Winstel, COO of Caregiver Action Network told a story of being the primary caregiver of her 85-year-old father and how caregivers’ needs can be met by employers.
She had just completed her drive from Frederick, Maryland, to Washington, D.C., one morning when her father called to tell her that he wasn’t feeling well, dialed 911, and was going to be taken to the emergency room. So just as Winstel pulled into the parking garage, she had to turn around and drive home. But when she called to tell her boss the news, she heard a distinct catch in his voice: “So, does that mean you’re not coming in?”
“Employers should have that ‘aha’ moment,” Winstel said. “If we’re there for patients, we have to be there for caregivers,” said Lisa Winstel, COO.
Next Avenue (5/17/2017)
Proposed cuts to Medicaid under the American Health Care Act passed by the House recently could change life for many people. Medicaid is not only an insurance program for low-income people. It’s a lifeline for older adults who need supportive services to stay at home. At-home services are a lifeline for Medicaid as well, which would otherwise be paying for more expensive care in an institutional setting.
John Schall, CEO of the nonprofit Caregiver Action Network, says for the nation’s 90 million family caregivers, “Medicaid and home- and community-based services can make all the difference.” Out-of-pocket expenses can quickly add up, often reaching $10,000 a year for caregivers, he says.
The Philadelphia Citizen (4/20/2017)
Partners on the Path helps caregivers give care to themselves—particularly those family caregivers who don’t have another network to turn to for counseling. This isn’t an easy concept for some. One of the biggest challenges, Founder Meier Hamilton says, is just getting caregivers to consider themselves in need of care. Some are even insulted: How dare you add me to the list of people I need to care for? But, Meier Hamilton says that increasingly, individuals and organizations are opening up to the benefits of providing specific guidance on how to balance care of others, with care of self. The for-profit company has three audiences: family caregivers, professional caregiver networks and employers.
With the Caregiver Action Network (CAN), a family caregiver organization, Partners on the Path created an online portal to help caregivers with one-on-one or pre-taped support and advice. And together, they have launched a program for employers, to help them manage workers who have caretaking responsibilities at home. But the notion of “compassion fatigue” is relatively new. This may be why, though there are a handful of support organizations for caregivers, like Caregiver Action Network, Partners on the Path is the only one that focuses primarily on this issue.
“The model developed by Partners on the Path on how to get through compassion fatigue and build caregiver resilience is one of the best I have seen anywhere,” says CAN CEO John Schall.
2016 - 1,920 Media Mentions
The Seattle Times (12/21/2016)
About 44 million Americans are unpaid family caregivers like Bobo — sometimes for a child with special needs, more often for a frail older adult, according to a 2015 estimate from the National Alliance for Caregiving. They are often women with children and a full-time job, though now 40 percent of caregivers are men, and millennials are becoming more involved in caring for someone at home, says John Schall, CEO of the Caregiver Action Network. “In too many cases, people just learn this stuff by themselves, and that’s really kind of dangerous,” Schall said.
That’s because many people don’t have the necessary skills. Thirty-three states have adopted legislation requiring medical centers to give caregivers basic training or instructions when a patient heads home from the hospital, though how this is carried out is largely up to the hospital.
KRCU Public Radio (11/23/2016)
Caregiving takes many forms from running errands for family members and friends who are elderly, sick, or disabled, to providing comprehensive round-the-clock care for a chronically ill parent or a child with special needs. Although some people receive care from paid caregivers, most rely on unpaid assistance from families, friends and neighbors.
The 2016 theme for National Caregivers’ Month is “Take Care to Give Care.” Because of the stressful and time consuming nature of caregiving, one out of five caregivers admit they have sacrificed their own physical health while caring for a loved one. Family caregivers are at increased risk for depression and many other chronic conditions. Caregivers need to realize the importance of caring for themselves as well. Caregiver Action Network encourages caregivers to seek support groups, take respite break and make time for exercising and eating healthy meals. They need to accept offers of help for domestic tasks and ask for professional assistance with organizing medical information, filing legal documents and communicating with healthcare providers.
Breast Cancer News (11/1/2016)
As we celebrate National Family Caregivers Month this November, the Family Caregiver Council, made up of national leaders in the caregiving and active aging space, acknowledges the impact this complex and demanding role has on adult children and spouses and the need for expanded support initiatives. The theme this year for the national event is "Take Care to Give Care," which underscores the importance of paying attention to the stresses of caregiving -- and the family caregiver. With our rapidly aging baby boomer and senior population, the physical, emotional and financial burden on the 44 million U.S. family caregivers is not sustainable, the Council cautions.
"While facing all those caregiving challenges, caregivers too often put themselves last. But only by taking care of yourself first can you be strong enough to take care of your loved one. You really do need to 'take care to give care'!" says John Schall, CEO of Caregiver Action Network.
"When employers force their employees with caregiving duties to choose between work and family, everyone loses. This can be particularly true for women, who still make up 60% of the family caregiver population (though men are increasingly shouldering the responsibility)," said John Schall, CEO, Caregiver Action Network.
"Two out of every five adults — tens of millions of Americans — are family caregivers of loved ones. Most of the people caring for someone at home are also working full- or part-time jobs. But increasingly, working women over 50 are leaving their jobs in order to provide the necessary care," said Schall.
Next Avenue (9/8/2016)
From John Schall, CEO, Caregiver Action Network: If you’re holding down a job and caring for a loved one, too, you know how hard it is to juggle your work responsibilities with caregiving. As the CEO of the nation’s leading nonprofit family caregiver organization, Caregiver Action Network, I get asked all the time: “Should I let my employer know that I have caregiving responsibilities?”
The fact is, you are not alone in being a family caregiver. Look around your office; statistically, one out of every five of your coworkers is in the same boat.
The Caregiver's Voice (9/5/2016)
There are over 44 million caregivers in the U.S. The role of caregiver impacts every aspect of family life. It creates emotional, financial, time, and workplace productivity challenges. Many of these challenges are unavoidable whether you are a new or experienced caregiver. Resources are available to provide support and guidance every step of the way.
“Caregiving is challenging enough as it is, so family caregivers don’t want to waste valuable time. They want help from sources they can trust and they want it fast,” says John Schall, CEO of Caregiver Action Network. “There are so many areas, challenges and sometimes unexpected obstacles where family caregivers could benefit from support. This website can guide caregivers to the help they need without a lot of searching.”
Next Avenue (7/18/2016)
Research shows that time constraints remain a constant issue in the caregiver’s world. More than 90 percent of caregivers provide 21 or more hours of care every week, according to the Caregiving in the U.S. 2015 report. That’s on top of the 40 or more hours a week that 56 percent of caregivers work at their regular job.
These 60-plus hours of work and caregiving often lead to significant stress, which, in turn, may lead to declining caregiver health. Studies have shown that caregiver stress is associated with higher rates of depression and lower perceptions of personal health, according to the Caregiver Action Network. Stress can even increase inflammatory markers (negatively affecting the immune system) in ways that may increase the caregiver’s risk of illness.
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.
2015 - 1,810 Media Mentions
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.