Many of our nation’s 53 million family caregivers are juggling paid jobs with caregiving responsibilities. They are largely Gen Xers but also include millennials and even some younger workers. Armed with little knowledge about long-term care and caregiving, the stress and demands are impacting their careers, relationships, finances, and their mental and physical health.
As a financial advisor, you likely have client families that include care recipients and family caregivers – and some of your clients may be providing care even if they haven’t shared this information with you. As a long-term care (LTC) specialist and member of two legislative working groups on LTC, I thought you’d be interested in learning about a recent Congressional briefing on caregiving that I attended on Capitol Hill.
On June 12, a group of policy experts, advocates and family caregivers convened in the Dirksen Senate Office Building to share caregiving stories and their thoughts about important programs that fall under the Older Americans Act, Medicaid and Medicare. These programs provide support and lifelines to the 53 million family caregivers.
Panelists included executives from many organizations including the National Alliance for Caregiving (NAIC), the Greater Wisconsin Agency on Aging Resources, Inc., the Alzheimer’s Association, the National Council on Aging (NCOA), and private companies and foundations in the caregiving space.
The group spoke candidly, with empathy and passion, about the policies affecting older Americans, including the Older Americans Act and the Well-Being Insurance Act for Seniors To Be At Home (WISH) Act. They also spoke about President Trump’s budget, which proposes deep cuts to many of these essential programs and safety nets for our nation’s seniors.
All of the panelists are current or recent caregivers. And nearly every attendee raised their hand when polled if they were ever caregivers or are currently caregivers. This truly reflects First Lady Rosalynn Carter’s caregiving mantra: “There are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.”
What’s At Risk
Medicaid (not Medicare) provides long-term care and other caregiving services for nearly 4.5 million Americans, said panel moderator Daniel Wilson, senior director of government affairs and advocacy for the National Council on Aging. Medicaid also provides direct financial support to caregivers as well as supplemental services like respite care, training and counseling. These services can help older Americans delay or avoid daily institutional care. Budget cuts could jeopardize these services.
Also risk in the current proposed budget is Medicaid’s home and community-based (HCBS) waiver program, an essential provider of respite care. Respite care is “planned or emergency care provided to an adult or child with disabilities to offer temporary relief to family caregivers.”
During the briefing, Rachel Richards, head of government programs and government relations at Careforth, a provider of caregiving support and resources, read a testimonial from one of Careforth’s beneficiaries, a cancer survivor with a rare neurological condition that required dozens of surgeries. The beneficiary’s mother was her primary caregiver and the HCBS program was a lifeline to her, allowing her to work and receive her own self-care.
As Rachel read the testimonial, she and in the room were brought to tears. Stories like the one she shared are not heard widely enough outside of caregiving conferences and must be shared with lawmakers for them to understand the implications of slashing these supportive programs.
Hearing caregiving stories from the public helped influence the Older Americans Act Reauthorization Act of 2024 (S.4776). This legislation passed the Senate in December 2024 with unanimous consent.
Investing in Caregivers Is Critical to the Economy
Caregivers are the fabric of our society who do noble but difficult work; 61% work while providing care. Their billions of dollars of unpaid care are a large part of our economy, said Scott Bane, a senior program officer at the John A. Hartford Association, which awards grants to enhance the health and wellbeing of seniors. Bane described caregivers as “unheralded philanthropists.”
Jason Renendez, president and CEO of the National Alliance for Caregiving, told me after the briefing that “by bringing together key voices from across the patient, aging and private sector communities for this congressional briefing to spotlight the importance of policymakers investing in family caregivers — from protecting Medicaid to funding Older Americans Act programs — we sent a strong message to policymakers: Strengthening American families means investing in caregivers.”
Stephanie Monroe of The Wrenwood Group LLC, a strategic consulting firm, told me, “caregivers are often invisible, healers, and life support to individuals who need special attention, focus and care. Without a national long-term care policy, I can’t imagine what this aging population would do without their loved ones and others who provide home care and support.” Essential services and wraparound services provided under the Older Americans Act “create a system that actually works,” she said, noting that she’d like to see these services expanded.
But many families are barely piecing together a system that works for them, often because they have no time to plan.
“It is important to know that becoming a caregiver can be an unexpectedly jolting experience, often arising with little to no warning,” Wilson of the National Council on Aging told me. “It can feel like a shock to the system not only from the sudden responsibility of caring for another, but also from the emotional, physical and mental demands.”
In addition to working full time as the senior director of government affairs for NCOA, “I navigate providing care for my 89-year-old aunt,” added Wilson. He’s also navigating this long-distance: He lives in Washington D.C.; his aunt lives in Chicago.
“Caregivers need federal legislation that will help us on this ever-changing journey,” he said.
The Good News
Frances Perkins, President Franklin Roosevelt’s Secretary of Labor and the first woman cabinet secretary said, “A government should aim to give all the people under its jurisdiction the best possible life.” Fortunately, there is much bipartisan support for caregiving and long-term care.
For example, the WISH Act, introduced in March by Congressman Tom Suozzi’s (D-N.Y.) and co-sponsored by Congressman John Moolenaar (R-Mich.), would establish a federal long-term care insurance program to give financial support for seniors and help foster a more vibrant private-sector LTC insurance market.
Tom’s personal story influenced his interest in drafting the WISH Act. During his youth, four of grandparents lived in his family home, three of whom were very sick. He saw his parents act as caregivers and how our system is broken and could not provide the necessary resources to help his grandparents and family.
How Advisors Can Help
As financial advisors you are uniquely positioned to assist families. By staying informed about legislative efforts like the Older Americans Act (OAA) and proposed caregiver tax credits, advisors can help families anticipate support programs, caregiving costs and eligibility timelines.
These discussions not only demonstrate added value but also can help you build trust during some of the most emotionally and financially vulnerable periods in a client’s life. Organizations like the National Alliance for Caregiving, the John A Hartford org., the National Council on Aging, the National Association of Insurance and Financial Advisor’s (NAIFA) legislative action teams, and AARP regularly publish policy updates that you can use to educate yourself and your clients.
You can also play an advocacy role. By engaging in local or national coalitions, attending policy briefings or supporting employer-sponsored caregiving benefits, you can help shift the conversation from reactive planning to proactive care.
Consider integrating questions about caregiving responsibilities, aging parents and dependent support into your client-intake process. This can uncover hidden financial stressors and align planning with the real, lived experiences of multigenerational households.
I also believe that financial advisors should partner with long-term care specialists, for their individual and business-owner clients, because these specialists live and breathe these issues every day. LTC specialists like myself stay up to date on the insurance carriers and their products, new entrants in the space and best practices for open enrollment, and legislative developments.
Helping your clients plan for LTC and caregiving is something that they need and expect, and it can help you retain and attract new clients. And also consider becoming and encourage your clients to be storytellers about family caregiving. We need a new generation of storytellers who are determined to use new ways to reach out and say to Congress, “We need help!”
Noel A. Evans is a group long-term care insurance specialist, host of the What’s Your Plan? podcast on DCRadio, 96.3 HD4, and a legislative advocate. He is based in Washington D.C.
