Hospices’ strategies to support family caregivers have room for improvement when it comes to addressing the broad range of these individuals’ unmet emotional and logistical needs.

Family caregivers often navigate a complex health care system without sufficient support, according to Sonya Dolan, director of operations at Mettle Health. The California-based organization provides guidance and supportive resources to family caregivers.

The current regulatory climate may be exacerbating hospices’ efforts to improve caregiver experiences and ease the financial and mental burdens that trickle impacts into quality, Dolan indicated. A national cultural shift and stronger reimbursement systems are needed to better address caregivers’ biggest pain points, she stated.

“Health care does not have the space to bill for an hour-long caregiver discussion, but this is an intervention that needs to be brought throughout the health care system,” Dolan told Hospice News. “We don’t have a way of validating what people are going through that will take that mental burden off of them so they have the space to feel the emotions of caring for another person. And in the world we live in now as core programs are being dismantled, it leaves them with no place to go and sends a horrible signal that these caregivers are not worthy as they’re doing this emotionally and incredibly difficult care.”

More than half of family caregivers across the country reported feeling undervalued by society in a recent survey conducted by Wakefield Research published in Otsuka America Pharmaceutical Inc. The survey spanned 500 caregivers supporting a loved one with Alzheimer’s or dementia conditions.

Nearly two-thirds (65%) of the caregivers indicated that their roles were more stressful than any of their professional positions. Additionally, 64% of the survey respondents reported facing tough financial decisions related to caregiving and patient expenses.

The daily care that family caregivers provide to individuals with dementia is equal to an estimated annual salary of $114,000, a separate recent Otsuka study found.

Loved ones supporting serious and terminally ill individuals consistently report a lack of awareness of the resources available to them, according to Tony Kudner, chief strategy officer at Transcend Strategy Group. The company surveys thousands of family caregivers annually, with year-over-year reports showing that these individuals don’t know where they can go to seek support, Kudner stated.

Community collaborations and referral relationships can be key to improving caregiver support, he said. Hospice providers need to leverage their public and referral outreach efforts with a wider net of communication avenues that reach multiple community groups, Kudner indicated.

Stronger educational efforts about their services can go a long way toward improving caregiver and patient satisfaction, according to Kudner.

“Outreach to family caregivers is hugely effective and very under-utilized,” Kudner told Hospice News in an email. “Outreach, marketing and education about the benefits of hospice care to the family of the hospice-eligible patient pays huge dividends to these exhausted individuals. With social media and advanced digital targeting, profiles can be built to reach them specifically with messaging that speaks to their pain points. We’ve seen organizations who do this consistently increase referrals and length of stay.”

Emotional and practical burdens could be eased if more spaces existed in which caregivers could collectively share their different experiences, helpful tips and form collaborative relationships, Dolan said. Caregiving support groups can offer this space, but often lack follow-up pathways toward resources that address their challenges, she added.

Caregivers are operating “sans community” in silos that lead to increased distress, anxiety, loneliness and depression, Dolan said. More community-based interventions are needed to help caregivers make informed decisions for their loved ones.

“People are caregiving in vacuums that no one ever knows about, and our caregiving support groups in this country need an overhaul,” she said.

Family caregivers spend a great deal of time reacting to emergency situations that could be better managed with greater education and communication from health care providers, Dolan stated. Stronger caregiver education could aid with improved expectation setting about the options available to their loved ones and themselves, as well as potential avoidance of unnecessary and expensive emergency care utilization at the end of life, she said.

Systemic changes are needed to amplify not only the beauty of caregiving, but also to highlight ways to address the largest challenges, according to Dolan.

“When caregivers are informed, they feel more confident in making the choices to take better care of a person,” she told Hospice News. “There’s so much power in the expectation setting and the comfort of knowing what will happen versus reacting from a place of fear in real time. When expectations don’t match up, that’s a whole other level of suffering on top of their grief and exhaustion. Having a space that’s laid out with all the information about an illness trajectory and the interventions that might come up can be the difference between having to put out a fire and react out of fear versus reacting with information.”