The 2026 NIA Dementia Care and Caregiving Research Summit Report documents spouses losing jobs and retirement savings because of dementia caregiving, through personal accounts rather than a formal survey. One panelist, a physician identified as Dr. Beasley, was laid off after dementia symptoms surfaced at work, which pushed his wife back into paid employment to cover the household's bills, according to NIA's 2026 summit report.
A second panelist, Ms. Lucas, told the summit she resigned from her own job because caregiving for a family member with dementia left her unable to perform it well, the same report states. For spouses and partners facing similar pressure, the report's qualitative accounts line up with harder numbers from other research groups on what caregiving costs in wages and retirement security.
Medical information disclaimer: This article is for general educational purposes only and does not provide medical advice, diagnosis, or treatment. Always consult a physician or other qualified health professional about symptoms, medications, tests, or treatment decisions.
Table of Contents
- What the NIA Report Actually Documents
- How Common Are Job and Income Losses for Caregivers?
- What This Costs in Retirement Savings
- What Spouses and Partners Can Do Now
What the NIA Report Actually Documents
The NIA report is built around summit testimony, not a counted survey of how many caregivers lose jobs or income. It recounts Dr. Beasley's layoff after his dementia symptoms became apparent at work, and the ripple effect: his wife returned to paid work to replace his income, according to the report. That single account illustrates a dynamic many caregiving spouses recognize — one partner's health crisis can force the other partner's hand in the labor market. Ms.
Lucas's account adds a second pattern: a caregiver stepping away from her own career, not because she was pushed out, but because she judged she could no longer do the job well while caregiving, per the same report. Neither account comes with numbers attached to how common these outcomes are. The report is explicit about this limit. NIA estimates the total annual cost of dementia caregiving, combining direct medical and long-term-care spending with the value of unpaid caregiving, at roughly $781 to $800 billion, and it states this figure likely understates the real cost because caregivers' lost wages and delayed return to work are difficult to measure, per NIA's report. That acknowledgment is why the report's panelist stories need outside data to show how widespread the pattern is.
How Common Are Job and Income Losses for Caregivers?
Other research groups have measured what NIA's report illustrates anecdotally. In a 2024 survey of employed family caregivers, Georgetown University's Center for Retirement Initiatives found that more than one in four cut their work hours, 16% turned down a promotion, and over 15% temporarily left the paid workforce because of caregiving duties, according to Georgetown's Center for Retirement Initiatives. EBRI's July 2026 analysis of its Retirement Confidence Survey found that roughly three in ten Americans age 25 and older are unpaid caregivers, and that this group carries more debt, holds fewer assets, and reports lower retirement confidence than people who are not caregivers, per EBRI's July 2026 report. Those findings describe caregivers broadly, not dementia caregivers alone, but dementia caregiving tends to run longer and more intensively than many other forms of family care.
Spousal caregivers face a sharper version of this pattern than adult-child caregivers do. A U.S. Government Accountability Office review found spousal caregivers were less likely to be employed and less likely to hold a college degree than caregivers who were adult children of the person receiving care, according to GAO's 2019 review. A March 2026 report citing elder-care experts explains part of why: caring for a spouse tends to be more isolating and all-consuming than other caregiving arrangements, which makes spousal caregivers more likely than adult children to leave the workforce entirely, per The Daily Record.
What This Costs in Retirement Savings
Lost wages don't just hurt a household's current budget — they compound into retirement shortfalls because contributions stop and Social Security earnings records thin out. TIAA Institute's January 2026 research brief finds that caregivers can face retirement-savings deficits of 40% to 90% by age 65, with the size of the gap depending on how long someone provides care, citing an earlier estimate from Columbia University's Mailman School of Public Health, according to TIAA Institute. That range is wide because caregiving duration varies enormously.
A spouse who leaves work for a year faces a very different retirement trajectory than one who provides care for a decade, which is common in dementia cases where the disease progresses slowly over many years. The years out of the workforce also tend to fall during a caregiver's peak earning and peak savings years, which is part of why the deficit compounds rather than simply reflecting lost wages dollar-for-dollar. EBRI's finding that caregivers hold fewer assets and carry more debt than non-caregivers reinforces this: the retirement gap isn't only about missed 401(k) contributions, it shows up in household balance sheets years before retirement arrives, per EBRI.
What Spouses and Partners Can Do Now
Because spousal caregivers are more prone to leaving the workforce entirely, protecting some form of paid work or income — even reduced — carries outsized value for long-term financial security. A few concrete steps follow directly from what the research shows: NIA's research agenda flags one option still under study: whether gig work and remote-work arrangements help caregivers stay attached to the labor force, which the agency treats as an open question rather than a settled solution, according to NIA's report. For a caregiving spouse weighing flexible work now, that means asking an employer directly about remote or flexible arrangements, since no established program answers this across the board yet.
- Before cutting hours or resigning, ask an employer about reduced schedules, remote work, or leave programs that preserve some income and keep retirement contributions active.
- If a caregiving spouse already left the workforce, treat the retirement-savings gap as a planning issue to address now, since the deficit TIAA Institute describes grows with time away from work, not just at retirement.
- Track Social Security earnings history during any period of reduced or no work, since benefit calculations are based on lifetime earnings and gaps lower future benefits.
- Where a household must choose which spouse exits paid work, weigh the GAO's finding that spousal caregivers already face lower employment and education rates than adult-child caregivers, since that gap can make re-entry harder for a spouse than for an adult child.
You Might Also Like
- AAIC 2026 LatAm-FINGERS Cognitive Health Results: What the Update Means for People With Mild Cognitive Impairment
- LatAm-FINGERS Lifestyle Coaching Findings Across 11 Countries in 2026: What the Update Means for People With Mild Cognitive Impairment
- AAIC 2026 PROTECT-Cog Lifestyle and GLP-1 Trial: What the Findings Mean for People With Mild Cognitive Impairment
