An Economic and Emotional Marathon: Dementia Caregiving in Today’s America
- 4 days ago
- 6 min read
By SweSwe Aye
According to recent data from AARP, caregiving has transitioned from a temporary family duty into a multi-year "marathon."
LOS ANGELES — For San San Tint, a typical morning is a delicate high-stakes exercise in clinical precision. Feeding her 89-year-old father, U Kyi Wong, is not just about nutrition; it is about survival.
“For a chronic dementia patient like my father, you have to be incredibly careful to prevent choking,” San San explains. “When I give him water, I have to know exactly when to add the thickener to prevent asphyxia. Most hired caregivers don’t have the patience for this level of detail; they often quit after a week. That is why I had to become his full-time caregiver myself.”
San San’s story is the face of a burgeoning national reality.
To care for her father who suffers from advanced dementia and Parkinson’s disease, San San made the ultimate professional sacrifice. In 2023, she shuttered her profitable restaurant to step into a role that has no days off and no salary.
The Caregiver’s Marathon: Data of Disruption
According to recent data from AARP, caregiving has transitioned from a temporary family duty into a multi-year “marathon.” The average duration of care now spans 5.5 years, with 29% of caregivers providing support for five years or more—a sharp increase from 24% just five years ago.
While 51% of caregivers report that their role gives their life a sense of meaning, the financial and emotional toll is staggering. For working caregivers, the strain is a “double burden.” Data shows that 31% of working caregivers have exhausted their short-term savings to manage care expenses, compared to 20% of those not in the workforce.
In San San’s case, her father’s dementia was compounded by a condition known as the “Levodopa Paradox,” where the very medication intended to treat Parkinson’s causes vivid hallucinations.
“When I ran the restaurant, the income was stable,” San San says. “Now, as a family caregiver, I only get paid for 40 hours a week by the state. It doesn’t compare. But if I don’t do it, there is no one else. We don’t have a choice.”
The Uncertified Nurse: Family Caregivers as Home-Based Clinicians
The modern family caregiver is no longer just providing companionship; they are effectively acting as uncertified nurses. Statistics reveal that 55% of caregivers now handle medical and nursing tasks at home, including managing catheters, performing injections, and monitoring vital signs.
Despite the complexity of these tasks, only 22% receive any formal training. This gap creates immense pressure.
“We have to be like bloodhounds,” says Pyay Soe, a specialized dementia caregiver. He explains that patients often cannot communicate basic needs, requiring constant vigilance to prevent issues like diaper rash. In moments of severe confusion, patients may even smear waste on themselves, requiring an immediate “full bath at a moment’s notice.”
From monitoring every spoonful of food to ensure they have “actually swallowed,” the role, as Soe notes, “requires infinite patience and deep empathy.”
The Policy Storm: H.R. 1 and the Dismantling of Safety Nets
As the physical and emotional demands on caregivers rise, the legislative landscape is becoming increasingly hostile. The “One Big Beautiful Bill Act” (H.R. 1) represents the largest health policy overhaul since the ACA, but for the aging population, it signals a “perfect storm.”
Brian W. Lindberg, vice president for Health and Aging Policy at Healthsperien, warned during a recent briefing at the GSA 2025 Annual Scientific Meeting that older adults will bear the brunt of these changes. H.R. 1 introduces significant Medicaid cuts and mandatory work requirements (80 hours per month) for those aged 19–64.
“Cuts and restrictions could reduce or limit Home and Community-Based Services (HCBS), including personal care aides and adult day programs,” Lindberg noted. “This increases the likelihood that older adults will need institutional care sooner.”
Furthermore, the removal of the “nursing home minimum staffing rule” threatens to lower the quality of facility care just as families are being priced out of in-home options.
The stability of home-based care often rests on a delicate partnership between family members and professional aides. However, as federal and state supports shift, this balance is increasingly under threat.
AARP Senior Director of Caregiving Rita Choula warns that any reduction in external aid has a direct, localized impact on the home. “If there is a reduction in the amount of external support that paid caregivers give,” Choula explains, “that means that more family caregivers are having to take on more responsibility.”
This shift often triggers a domino effect of instability, forcing many to “make a change in their work life” or “pay more out of their own finances.” Choula argues for state and local policies like paid medical leave and financial aid to stabilize caregivers who are managing the diverse needs of both seniors and children.
The Psychological Toll: The ‘Family Help Paradox’
The stress is not just financial; it is deeply psychological. Obinna C. Odo, a doctoral researcher at Miami University, presented findings in Boston showing that frustration and worry are the strongest predictors of caregiver stress.
His research uncovered a “Family Help Paradox”: caregivers who received help from other family members often reported higher stress levels, likely due to unreliable assistance or conflicting opinions on care.
“Caregivers may be feeling okay on the surface, but deep down, there is a whole lot of psychological strain,” Odo explained. “They need mental health services, counseling, and relief packages because the job loss and drop-in work hours have massive implications.”
Pyay Soe confirms this emotional exhaustion. “The hardest part is the lack of trust. Dementia patients often accuse us of stealing their money or belongings. If the family doesn’t accept the reality of the dementia, they start to suspect the caregiver, too. When there is no one to stand up for you, not the family, and not even the agency, that is the most stressful time.”
The Future: AI vs. Immigration Realities
As human caregivers become more difficult to find with 40% of home health aides being immigrants currently facing stricter national policies, science is looking toward Artificial Intelligence (AI) for a solution.
Lillian Hung, a researcher from the University of British Columbia, is exploring the use of social robots like “Paro” (a robotic seal) and “Lovot” to support mental health in long-term care.
“AI is changing the game,” Hung said. “These robots have machine learning and facial recognition. They remember how a person interacts with them and personalize that interaction.”
Hung argues that these robots shouldn’t replace humans but complement them. “They offer love and affection. A patient talks to the robot, which practices their linguistic skills and linguistic creativity. It’s like exercise for the brain.”
However, the “digital promise” of AI stands in stark contrast to the immediate threat of policy. Approximately one-third of Americans with limited English proficiency rely on Medicaid or Medicare programs currently facing cuts under H.R. 1. Additionally, a new Executive Order designating English as the official language could further isolate immigrant families navigating these complex systems.
A Call for Recognition
The number of family caregivers in the U.S. has surged to 63 million—representing 1 in 4 adults. As the “sandwich generation” continues to balance caring for children and aging parents, experts argue that societal investment must catch up to this national reality.
To address the gaps left by federal policy shifts, Karon Phillips, PhD, MPH, of Trust for America’s Health, emphasizes the urgent need for local innovation and “thinking outside the box” to support aging populations. “We need to engage faith-based communities, libraries, and local mayors. Every state will have to do something different to offset these restrictions.”
Judith G. Gonyea, PhD, FGSA, of Boston University, agrees. Gonyea’s work has focused on historically disadvantaged older populations. With H.R. 1, she says, “there’s an acceleration of the shifting of responsibilities from the federal government to state and local governments, both in terms of delegating power to states and fiscal responsibilities.”
That leaves millions of older adults “experiencing uncertainty, insecurity, and risk in old age.”
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