Hope and Possibility for Improving the Caregiving Experience

November 9, 2022

By Elaine Sang, MSN, BSN, RN

For Jisella Dolan, family caregiving is a near-universal experience that highlights our shared humanity. As the country and the world “wakes up” to essential nature of the caregiving journey, Ms. Dolan is filled with hope and possibility for improving the well-being of family caregivers and how we care for aging family members at home. Dolan is the Chief Global Advocacy Officer of Home Instead, the world’s largest home care franchise company. She was also recently recognized by the United Nations and World Health Organization as one of 50 global leaders transforming care for older adults.

In a recent conversation with Mary Naylor as part of the Caregiving NOW Initiative, Dolan pointed out the opportunities available as the U.S. releases the first-ever National Family Caregiving Strategy. Dolan advised the federal government on the new national strategy, which the U.S. Department of Health and Human Services (DHHS) released last month, and described its five main themes:

• Increasing the awareness of family caregiving, including self-identification. All too often, Dolan said, people don’t see caregiving as a new role or a new responsibility, but rather as an extension of being a daughter, a son, a partner, or grandchild. They may not think about reaching out for the resources they need in this new role.
• Engaging family caregivers as partners in health care. She noted that this is a particular passion for DHHS Secretary Becerra, who believes that caregivers should be considered at every patient encounter. “Let’s bring them in the loop. Give them access to data and information, lean into the support they provide and help them through their journey,” Dolan declared.
• Increasing access to resources, support services, and education for family caregivers. Although many caregiver resources exist, they are not organized or aggregated in any way. The challenge, Dolan noted, is to make these resources consumable and just-in-time when caregivers really need it.
• Increasing financial and workplace support and protections for family caregivers. Employers can play a key role in supporting their employees who are family caregivers by increasing the flexibility of existing benefits and leave policy and by offering respite services.
• Generating evidence and data on best practices and policy. For so long, Dolan said, home care and family caregiving have been a “cottage industry” made up of many great organizations producing reports and information. But going forward, the strategy calls for a more holistic perspective on family caregiving that can be used to refine and prioritize policy and practice. Academia can help provide this perspective through rigorous data collection and analyses.

As the nation coalesces around these recommendations, Dolan acknowledged that the recommendations are just a starting point for actions that will evolve in the coming years. But she sees possibilities for more immediate steps to improve the caregiving experience, through technology and partnerships across the private sector, government, and academia. As an example, Dolan described the approach taken by Home Instead, which recently merged with Honor Technologies, a Silicon Valley startup. This “marriage” of high-touch and high-tech care allows Home Instead to scale up its capacity to care while continuing to deliver the personalized, in-home services that families want and need. These technological innovations can be used for telemedicine, remote monitoring, and more centralized operations.

“No one has done this at the level we have,” Dolan said. “I mean it’s one thing to do Uber rides to the airport, or DoorDash to get your food. To deliver 24-7 care to someone with dementia in their home, that is highly personal and a different way that tech shows up.” Dolan herself used these technological supports when her mother was recovering from knee surgery. Texts and online dashboard services helped her to stay connected with her mother’s home care providers and to receive real-time updates from them. The technology allowed her to manage her mother’s care while continuing to work, along with peace-of-mind knowing that her mother was receiving good care.

Funding possibilities

Even when family caregivers are able to keep working, they can face financial stress because they often help pay for their loved one’s care, food, and transportation. Dolan pointed to some promising opportunities to increase the funds available for family caregivers, that include:

• Using existing savings vehicles, such as tax-free Health Savings Accounts (HSAs), to pay for home care services and supports. Bills that would expand HSAs in this way are pending in the House and Senate and have bipartisan support.
• Allowing people to use retirement savings from 401K plans, without tax penalty, to pay for their own care needs or those of a loved one.
• Doing more with tax credits to help families and incentivize employers. Last year, bills were introduced to provide up to $5,000 in federal tax credits to eligible working family caregivers. Tax credits or breaks could also be given to employers who offer long term care support or respite to their employees who are caring for a loved one.
• Increasing Medicare coverage of chronic care at home, beyond the small benefit now offered by Medicare Advantage plans.
• Incentivizing families to start saving earlier for long term care expenses, similar to how families save for college expenses now.

Dolan’s enthusiasm was most evident when she highlighted the immediate opportunities for employers to improve the well-being of the nearly four in 10 employees who are family caregivers. She encouraged employers to “lean into” and recognize their employees’ full selves, by creating flexible benefits that support employees in roles as caregivers, much as they now tout their support for employees as parents. Further, she recommended that employers express this concern in policy and communication, and ask employees what they need, in terms of resources and support.

Through the National Family Caregiving Strategy, technological advances, and cross-sector partnerships, Dolan sees momentum building toward a future in which family caregiving is a journey that is shared, celebrated, and supported. The possibilities for improving the near-universal experience of caregiving are almost limitless.

Caregiving NOW! with Jisella Dolan

Register today for the next exciting conversation in our webinar series with Alexandra Drane, CEO and Co-Founder of ARCHANGELS on December 14, 2022. This interactive session will feature ARCHANGELS’ Caregiver Intensity Index designed to engage all caregivers, most especially those that do not see themselves as caregivers.