CAN in the News – Archive

CAN History

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 understand the impact of new treatments. That’s why we oppose the plan to introduce price controls, like many patient advocacy organizations.”

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 log into a telehealth portal using your phone or computer. From there, you can see and talk with a doctor to receive the care you need. But there are some drawbacks. Not everyone has the Internet access need for video appointments and not everything can be done on video.

Caregivers may not participate in telehealth if the platform limits participants to doctors and patient. This setup can exclude them from appointments and discussions.”Caregivers often facilitate communication between health care providers and patients,” Schall said. ” They help implement treatment plans between visits. Their presence to receive instructions and ask questions is crucial.”

Scripps (11/19/2021)

In a Scripps article for National Family Caregiver Month, a CAN Caregiver Help Desk representative emphasized caregivers preserving their identities. They highlighted the importance of caregivers maintaining their sense of self amidst caregiving responsibilities. 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 campaign participant suggested, “Care for your loved one, but also make time for something you enjoy.” It emphasizes balancing caregiving with personal fulfillment.

Bloomberg (11/18/2021)

New data shows the great emotional toll that the pandemic has had on family caregivers. “Even in non-pandemic times, the pressures of caregiving can be far-reaching. They often negatively impact the financial, physical, and emotional well-being of the entire family. These data underscore how the pandemic has only increased these pressures. Lisa Winstel, Chief Operating Officer of Caregiver Action Network and a member of the Embracing Carers^® advisory board, highlighted this trend.”As we navigate through COVID-19, it’s crucial not to overlook that many caregivers’ responsibilities and stress levels will persist.”

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, we used terms like “handicapped” or “senile” when referring to disabilities. Today, we prioritize “person with a disability” or “person with dementia,” emphasizing the person first, then the condition or role. 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. He discussed the importance of National Family Caregivers Month and promoted 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 pandemic caregiving struggles, CAN COO Lisa Winstel noted a dramatic increase in caregiving hours. This rise has led to heightened stress and burnout among family caregivers.”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 of individuals with rare diseases encounter unique challenges. However, they can discover a supportive network comprising 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 often feel uncertain about the future and managing their loved one’s condition. Fortunately, patients with rare diseases and their caregivers can usually find dedicated associations or foundations for their disorder. These organizations offer support and resources tailored to their needs. These nonprofits help educate families and patients, provide materials and resources, host conferences, fundraise for research, and offer support groups.

Vox (8/4/2021)

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.

Forbes (7/13/2021)

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.

Rewire (6/8/2021)

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.

Guideposts (4/14/2021)

“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.

Forbes (2/20/2021)

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.

Forbes (2/16/2021)

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.

Scripps (9/30/2020)

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.”

Scripps (7/8/2020)

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.

Considerable (7/21/2020)

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 Medi