October 16, 2020 – Telehealth programs are so focused on connecting the patient with the provider that they sometimes forget about the other person in the room: the caregiver.
And that’s a problem. Family members and friends who care for loved ones can help improve care management at home by playing an active role in telehealth, either through helping the patient or contributing their own insights.
In addition, the growing ranks of caregivers in the US are facing their own health issues, particularly stress, and could greatly benefit from telehealth services that address their needs. Those services, in turn, would greatly improve the caregiving process, leading to better health outcomes for both patient and caregiver.
According to a May 2020 study released by the National Alliance for Caregiving (NAC) and the AARP, the number of family caregivers in the US has increased by 9.5 million in the last five years, due in part to an older generation that wants to stay at home and healthcare costs that prevent families from putting loved ones in an assisted living facility or even hiring help around the home.
The report notes that caregivers are taking on more responsibilities, caring for people with more complex needs – and one in four are caring for more than one person.
Additionally, more than 20 percent are spending more than 40 hours a week caregiving, and one in three are spending at least 20 hours a week. Nearly a quarter also say caregiving has affected their own health and made it more difficult to care for themselves.
“As we face a global pandemic, we’re relying on friends and family to care for the older adults and people living with disabilities in our lives,” C. Grace Whiting, JD, the NAC’s president and CEO, said in a press release accompanying the report. “Caregivers are essential to the nation’s public health, and the magnitude of millions of Americans providing unpaid care means that supporting caregivers can no longer be ignored.”
Those numbers are pushing healthcare providers, the payer industry and even vendors to explore telehealth and mHealth tools and services that address caregiver needs.
In a February 2020 survey, Oregon’s Cambia Health Solutions found roughly two-thirds of the nation’s caregivers are using at least one mHealth or telehealth tool – and about 40 percent of them want more help with care management.
The challenge needs to be tackled from two different angles. First, are providers thinking about the caregiver when they use telehealth? The industry needs to address whether care management workflows are designed to include the caregiver or caregiver observations and if provider-to-patient communication platforms loop in caregivers or family members to keep them in the conversation.
On the other hand, are caregivers taking advantage of the tools at their disposal? Healthcare stakeholders need to understand whether caregivers make time to access online resources or find tools that address their health, with the understanding that taking care of their own health directly affects how effective they are as caregivers.
For example, a hospital or practice establishes a remote patient monitoring program to track patients at home with a chronic condition. Do they rely on the patient to send biometric data back to the provider, or does the platform allow a caregiver to help gather and transmit that data? Can the caregiver offer observations on the patient’s daily activities or health? A platform that doesn’t include caregiver observations could miss out on that extra set of eyes that pick up things missed by the technology or the patient.
40% of caregivers want more help with care management
How about a health plan that includes counseling and other resources for caregivers? This might help the caregiver not only in improving his or her mental health, but in learning how to become a better caregiver, thereby improving the patient’s overall health.
Whiting says healthcare providers have to include caregivers in the care management loop from the onset – in the hospital.
“Caregivers are not visitors – they’re not just showing up with balloons and casseroles,” she notes. “This really is a person who is part of an interdisciplinary care team.”
That means conducting an analysis up front to determine how the caregiver should be integrated into the patient’s care management plan. For example, says Whiting, can the caregiver do some tasks that would otherwise be done by the patient, a home health aide or even the telehealth platform?
“A good managed care plan includes caregivers,” she says, adding that providers and payers sometimes give the patient too many responsibilities or have too much faith in the patient being able to complete tasks.
“The technology that we work with isn’t always built to accommodate the fact that people are not always rational actors,” she explains.
Conversely, providers need to make sure that a caregiver isn’t duplicating the efforts of the patient or the technology. Sometimes a telehealth program is put in place without understanding the resources already available to the provider.
“I think we often don’t take advantage of what caregivers can do,” Whiting says.
Finally, providers need to make sure there are resources in place to help the caregiver. That includes access to counseling and support. And it might mean gently convincing them to take advantage of those resources.
“There are advantages to making that separate,” Whiting says. “Caregivers don’t tend to identify (as caregivers) and they don’t think of it as a separate role.”
Examples of telehealth programs that incorporate the caregiver are, in fact, common. Perhaps the best known is the Department of Veterans Affairs’ REACH (Resources for Enhancing All Caregivers Health) VA Program, which uses mHealth tools such as iPads and apps to give caregivers an on-demand link to everything from caregiving tips to stress management classes.
In Texas, the University of Texas Health Sciences Center in San Antonio launched a program in 2017 that uses telehealth to provide counseling services for caregivers in military families, where depression rates are four times higher than other populations.
“As research from RAND and the Elizabeth Dole Foundation has shown, military caregivers experience depression, anxiety and hopelessness at a higher rate than civilian caregivers, making them less able to care for their children and other family members,” Roxana Delgado, PhD, the wife of a Purple Heart recipient and a research fellow with the university’s Military Health Institute, said in a press release announcing the program.
“They are stoic, want to carry on and are conflicted by guilt about their feelings,” said Delgado, who is also a member of the Department of Epidemiology & Biostatistics at UT Health San Antonio which helped train the therapists to conduct telehealth sessions. “They need to talk about their concerns on a consistent basis with a caring professional. Even when they have access to mental healthcare services, military caregivers find it difficult to participate because of their day-to-day caregiving responsibilities and challenges with transportation and respite care. Bringing this program directly to their homes ensures that we bridge that gap for this community.”
Caregivers for children also face significant challenges.
In Maryland, the University of Maryland partnered with the Children’s National Health System in 2019 to adapt a telehealth platform used to screen children at home for ADHD to also screen their parents.
“We are taking this approach because we recognize that untreated parental mental health challenges can influence the home environment and the child’s functioning over time,” said UMD psychology professor Andrea Chronis-Tuscano, principal investigator for the study. “Screening in primary care is an excellent way to capture families that need support but might be reluctant to go to a mental health specialty clinic for parental issues.”
“It can be difficult for a parent to create an organized and consistent environment for their child with ADHD if they themselves struggle with executive functioning difficulties such as time management, planning, and organization,” she added.
1 in 3 caregivers spend at least 20 hours a week providing care
Many pediatric telehealth programs intentionally separate daily care management and resources for parent/guardian caregivers in an effort to give those caregivers some time away from the children to spend on themselves. Among the most popular platforms are online peer support groups that give parents and guardians an opportunity to talk with, and learn from, others facing the same challenges.
While the benefits may be apparent, health systems should realize that a virtual link for caregivers doesn’t guarantee improvement in care, and an effective program has to be tailored to both caregivers and patients.
That point was made in a 2020 study by researchers at the University of Alabama at Birmingham, who found that a telehealth program offering early palliative care intervention for caregivers of persons with advanced heart failure didn’t really help at all.
“Mounting research suggests that heart failure family caregivers play a critical role in promoting patient outcomes such as medication and treatment adherence, health, survival, self-management behaviors, and quality of care,” the researchers said. “Performing these tasks, often with no training and while also coping with seeing a close relative deal with a life-threatening illness, has been associated with high rates of caregiver physical and psychological distress and low quality of life.”
And yet, they found little to no improvement in caregivers’ health – and 40 percent of those enrolled in the program didn’t even complete it.
“Insights from our results suggest that future interventions should be briefer, target more distressed caregivers than those in our sample, and assess effects on patient outcomes,” the researchers concluded. “Development of reliably efficacious interventions for diverse heart failure family caregivers remains elusive but is of such importance that continued efforts and testing are needed to optimize culturally appropriate support to this hidden workforce.”
In September, Massachusetts-based Harvard Pilgrim Health Care announced a partnership with Ceresti Health to create an online platform where caregivers of seniors with cognitive impairment could go for education, coaching and support from peers.
“Successfully caring for someone with cognitive impairment, and their associated multiple chronic conditions, requires specialized knowledge, skills and confidence,” says Dirk Soenksen, CEO of California-based Ceresti, which has worked with several health plans, including Blue Cross Blue Shield of Minnesota. “Many caregivers are inexperienced and stressed, and welcome any sort of training and support to improve their ability to support their loved one.”
Soenksen also notes that caregiver needs are addressed differently by public and private health plans. Whereas some self-insured employers and private health plans are offering support to caregivers who are employees or members, Medicare focuses on the care recipient. And few health systems focus on the caregiver because there are no financial incentives for doing so.
That may change, he says, as Medicare Advantage plans become more popular.
“Some Medicare Advantage plans are beginning to recognize that they can dramatically improve health outcomes of their members that rely on family caregivers,” Soenksen says. “Claims data shows that members with cognitive impairment incur more than 65 percent of all potentially preventable hospitalizations incurred by all health plan members, and more than 60 percent of all hospital readmissions. The cost numbers are staggering, especially since members with cognitive impairment are a population that is not currently addressed by most MA plans.”
“Thus, unlike in a commercial population, there is an incredibly strong economic argument for supporting caregivers because they can improve care and reduce healthcare costs for a loved one who is a member of an MA plan,” he says.
The number of family caregivers in the US has increased by 9.5 million in the last five years
In its report earlier this year, Cambia found that three out of every four employers are caregivers themselves, and more than 60 percent are interested in making mHealth and telehealth more available to employees who are caregivers.
“While caregivers clearly want access to human experts, the majority of employers and employed caregivers report their company does not currently offer a tool featuring remote access to family health records or live human interaction,” the report notes. “Nearly 2 in 5 employed caregivers say having access to a tool that enables them to monitor health records remotely (43 percent) or connects them with a health and wellness professional who can answer questions and support caregiving activities (36 percent) would increase their workplace satisfaction.”
Soenksen says caregiver support services need to be personalized to have the best impact, and they need to be coordinated with the patient’s care plan. This helps not only the caregiver but their loved one.
“In our telehealth programs we ask caregivers to provide real-time insights about the health of their loved one in a daily risk assessment that is completed on a mobile device,” he says. “These assessments, in conjunction with insights made by our remote coaches, allows us to empower caregivers to prevent emerging health issues that would otherwise lead to an emergency department visit or a hospitalization. For dementia especially, preventing hospitalizations means that the trauma associated with such an event, and the associated cognitive and functional declines, can be avoided.”
So what steps should a hospital or health plan take to include the caregiver in a telehealth program?
• Conduct an analysis. Find out how many caregivers would be involved in the patient’s care, how they are prepared to help the patient, and how comfortable they are in collecting data and using telehealth or mHealth technology.
• Design communications platforms to include caregivers. Whether via phone call, e-mail, text or even video session, make sure caregivers are part of the conversation, so that they’re aware of the entire care plan and how they fit into it. And just because family members may be located in different towns or states doesn’t mean they shouldn’t be part of the plan.
• When gathering patient data in a remote monitoring platform, make room for caregiver observations. The patient can’t always be relied upon to send data or to be an objective observer, especially when dealing with a chronic issue that may affect behavioral health. Another set of eyes and ears in the home can pick up things that might otherwise be missed by the patient or home health aide.
• Make the caregiver part of the care team. Design telehealth services that are easy to learn and use, and train the caregiver to use them. Whenever possible, make the process interesting or fun, so that it becomes a family exercise or game.
• Incentivize caregiver participation and input. Explain how caregivers can improve the patient’s health outcomes, how a healthy caregiver can affect care, and how a caregiver who doesn’t look out for his or her own health can negatively affect care. Health plans can even add benefits for meeting caregiver benchmarks.
As telehealth becomes a standard of care and healthcare providers look to push care out of the hospital and into the home, programs that take the caregiver into account stand a better chance of improving clinical outcomes and boosting quality of life. But they have to be well researched and developed, so that the patient, the provider and the caregiver all see the benefits.