Family Caregivers Turn to Tech as Burden Soars

Family caregivers are using technology to address their most significant concerns amid rising demand for end-of-life support. Hospices are paying attention to these and other trends as they develop strategies to curb increasingly complex caregiver burden.

Improving family satisfaction and support requires a two-pronged approach that involves better care coordination and expanded caregiver education. This is according to MiraSol Health CEO James Dismond. The South Carolina-based nonprofit provides hospice, palliative care and behavioral health.

Hospices need to be aware of how and where families are receiving information about end-of-life care options, Dismond said. Care navigation now involves more technical components than in the past, he indicated. Ensuring that safe, accurate and meaningfully helpful avenues exist is key as family caregivers’ needs diversify beyond the bedside.

“We are in our next healthcare crisis already, and that’s the need for caregiver support,” Dismond told Hospice News. “We really need to pay attention to technology from [a] care delivery standpoint. Technology is coming a long way [and] can provide educational support, but we also have safeguards [in] how we utilize these tools so they’re safe. The first prong is upstream education and planning. The second and most difficult prong is knowing what resources are available to you.”

Addressing the needs

Today’s family caregivers are facing an “extreme need” for more dynamic support, Dismond said. Many individuals are stepping into these roles with limited financial or logistical resources and little knowledge about the healthcare resources available to them, he indicated. Moving the needle forward involves strong community collaboration and improved education.

Hospices need more innovative approaches to community outreach and care coordination, Dismond said. Now more than ever before, healthcare organizations are more open to the utilization of technology, particularly tools that help expand patient and family reach, he stated.

Another notable trend for hospices is that more families are using artificial intelligence (AI) tools to learn more about their unique healthcare options, according to Dismond. Hospice providers need an understanding of families’ technology utilization. Also important is an organization’s digital presence when it comes to alignment with goal-concordant care delivery, particularly for end-of-life transitions.

“We’re trying to get innovative with how we interact with patients and family members,” Dismond said. “It’s intriguingly interesting and terrifying at the same time as communities use AI tools. From a provider standpoint, we really need to understand that we need to have as much out there in the web verse so that AI is pulling all of that data of a reputable source they should access for care.”

One challenge is that families often begin care planning in the middle of a crisis, when time is short and the stakes are high, according to Holly Larson, founder, of Your Chief Care Officer. The company features a family caregiving education platform that provides tools and resources for nonmedical decision making.

Families need more timely access to information and anticipatory guidance on what to expect along a loved one’s illness trajectory, Larson said. These issues are often families’ most frequently asked questions, she indicated. Technology has evolved to help better connect caregivers with the resources that support their individual needs.

“Families are already part of America’s care infrastructure. The question is whether we will continue depending on that infrastructure without adequately supporting it,” Larson told Hospice News in an email. “We should also assess caregiver capacity as routinely as patient needs. Too often, a care plan is built around work a family member is simply expected to absorb. They need access to palliative care, hospice, social work, faith-based and community support when those services become relevant — not only when families know enough to ask for them.”

Burden levels climbing

Family caregivers’ most significant problems include rising administrative burden, increased time commitments and lagging goal-concordant financial support, said IVI President and CEO Marc Boutin. Formerly the Center for Innovation & Value Research, of the independent nonprofit research organization primarily focuses on healthcare and patient-centered outcomes.

The nation’s healthcare system is “overdue” for reform. It can often be complex for families to navigate, particularly for those caring for a loved with complex needs and comorbidities, according to Boutin. Caregiving navigation challenges have “huge impacts” on whether patients receive care that is in line with their wishes, he said.

Systemic improvement is necessary to better address the disparities in goal-concordant care, Boutin indicated. Three domains that need rebuilding include more accountable outcome measures, better family caregiving navigation tools and more sustainable, cross-reimbursement options for providers, Boutin stated.

“It’s really important to think about the art of the possible,” Boutin told Hospice News. “The friction that is built into the U.S. healthcare system is uniquely American, and it has exacerbated inequity at the end of life. It’s an opportunity for big visionary ideas. We need to redesign the healthcare system, not totally implode it. There are a lot of advantages, but it is a multiplicity of systems that are fragmented and uncoordinated, all based on very short-term outcomes. We need to look at how we refocus on patient- and family-centered outcomes.”

Family caregivers also face challenging financial circumstances, according to recent research.

Family caregiver costs exceed $25,000 annually, according to Bay Alarm Medical’s Caregiver Tax Report. The emergency response system provider surveyed 507 family caregivers across the country. Roughly 70% of the respondents reported financial “hits” to their current jobs due to their caregiving responsibilities. Nearly one-in-three adults stated that they had scaled back or pulled from their own retirement savings to offset caregiving costs, the report found.

More than half of the family caregivers surveyed reported increasing stress, anxiety, depression and burnout.

Timely access to support plays an important role in addressing rising caregiver burnout, said Bay Alarm Medical CMO Alan Wu.

“We hear the same thing from caregivers time and again: true support often doesn’t show up until it’s almost too late,” Wu told Hospice News in email. “The money side of caregiving, like lost wages, out-of-pocket costs and missed work, is a primary source of stress. Families are largely left to navigate the exhausting day-to-day reality of care on their own. By the time hospice becomes part of the conversation, most caregivers are already at their breaking point.”

Hospices need to be aware of how technology trends are impacting caregiver support and patient access, said Jane Nam, founder of AgeTech Journal. The database provides information for aging care providers and caregiving companies to track market trends.

Family caregivers are seeking information that “seriously considers” dignity in person-centered care delivery, Nam told Hospice News. The digital world is reaching a “interesting time” in terms of technology utilization in healthcare navigation, she said. Today’s caregivers are more well-versed and articulate in technology in ways that help them to better “map out” a loved one’s needs.

Hospice providers need deep insights into the potential for technology to alleviate burnout among both family caregivers and clinicians, Nam said. A significant trend is that more caregivers are relying on digital methods to provide long distance support as technology evolves and changes family and workplace dynamics, she added.

Hospices have a large role to play in family caregiver technology utilization, according to Nam

“Technology can absolutely help bridge that coordination gap and reduce cognitive load,” she said. “The technology is there, and the demand is there. It’s really a matter of connecting the two sides. I think part of the work that is currently being done (and must continue to be done) is advocating for hospice providers as technologists in their own right. They’re critical to the mission of bridging the tools with the people they were created to benefit: older adults and their care circle.”