Where to start › When a parent moves in › The costs nobody itemizes
The costs nobody itemizes
It never arrives as one bill. It arrives as the grab bars, the co-pay, the special food, the incontinence supplies added to every grocery run, the higher utility bill from a warmer house, the gas for the fourth appointment this month. No single receipt looks like much. Researchers asked caregivers to add it up.
The numbers, with their sample
AARP surveyed about 2,380 family caregivers between 15 March and 25 April 2021, using a survey plus a one-week spending diary annualised over the year.[1] What it found:[1][2]
- Nearly eight in ten reported routine out-of-pocket caregiving expenses. Five per cent reported none.
- The typical annual total was $7,242, averaging 26% of the caregiver's income.
- More than half of all spending went on housing costs. Medical costs — providers, therapy, equipment — were about 17%.
- Counting how many caregivers had each kind of expense rather than how much was spent: about half reported household-related expenses, 30% paid rent or mortgage costs and 21% paid for home modifications.
- About a third reported two or more work-related strains, and that group averaged $10,525 a year, almost double caregivers with no or one work problem. Roughly half experienced financial hardship — cutting spending, running down savings, or reducing retirement contributions.
AARP also reports the strain falling harder on Latino and African-American caregivers, and on younger caregivers who have had less time to build up resources. That is the study's own characterisation rather than a spending figure we can give you.
Two honest caveats. This is a 2021 survey of a sample of family caregivers, so prices have moved and your household is not the average. And an earlier version of this page gave separate averages for caregivers sharing a home — about $8,600 — and for dementia care — over $10,000. We could not find those in the source, so they are gone.
None of this is here to alarm anyone. It is here because caregivers routinely treat financial strain as personal mismanagement when it is the documented average experience of the role.
Where some of it comes back
- Your Area Agency on Aging, first (1-800-677-1116). The National Family Caregiver Support Program funds five categories of support through state and local aging networks: information, help getting access to services, counselling and support groups and training, respite care, and limited supplemental services.[3] Note what that is and is not. It funds services, not a general reimbursement of your receipts, and local programs set their own intake and availability. Ask what exists where you live and whether any cost-sharing applies — who helps me locally.
- Getting paid for the care itself. AARP states that all 50 states and the District of Columbia offer a version of self-directed Medicaid long-term-care services, which is the route by which a family member can be paid for an eligible person; what it is called and who qualifies vary by state.[4] If your parent has means instead, a properly drafted caregiver contract is how payment is made legitimate — and doing it informally can cost them Medicaid eligibility later, which is why that page exists.
- Tax relief. If your parent qualifies as your dependent, the Credit for Other Dependents and the ability to claim medical expenses you pay on their behalf can both matter at filing. The IRS rules are specific about support and income tests, so take it to a tax preparer with actual numbers: what you paid, for what, and your parent's income.
- Veterans' benefits. If your parent is a veteran or a veteran's surviving spouse, the veterans page covers Aid and Attendance, and caregiver contracts covers the VA's caregiver program and its 70% rating requirement.
- Document it from now on. Every program above, every tax deduction, and any future caregiver child exemption claim runs on records. Lodestone's free care log worksheet is for exactly this: expenses, hours and tasks, month by month, in a form an administrator or attorney can use.
Who helps you locally, free. Your Area Agency on Aging gives free options counseling. Reach any of them through the federal Eldercare Locator at 1-800-677-1116 or eldercare.acl.gov (Administration for Community Living).[5] More on the four people who help on Who helps me locally.
Quick answers
How much do family caregivers spend out of pocket?
AARP surveyed about 2,380 family caregivers between 15 March and 25 April 2021. Nearly eight in ten reported routine out-of-pocket expenses, the typical annual total was $7,242, and that averaged 26% of caregivers' income. Around a third reported two or more work-related strains, and that group averaged $10,525 a year — almost double caregivers with no or one work problem. These are 2021 survey results from a sample of caregivers, not a current estimate for your household. [1, 2]
What do caregivers spend the money on?
In AARP's study, more than half of all spending went on housing costs, and medical costs — providers, therapy, equipment — were about 17%. Looking at how many caregivers had each kind of expense: about half reported household-related expenses, 30% paid rent or mortgage costs, 21% paid for home modifications, and 5% reported no expenses at all. The rest spreads across transport, food, supplies and personal items, which is why the total accumulates without ever looking like a bill. [1, 2]
Can I get reimbursed or paid for caregiving expenses?
Some routes exist, none of them a general reimbursement. The National Family Caregiver Support Program funds respite, counselling, training, access help and limited supplemental services through state and local aging networks — ask your Area Agency on Aging on 1-800-677-1116 what is available and whether there is any cost-sharing. All 50 states and DC offer some form of self-directed Medicaid services, which can pay a family caregiver for an eligible person. Tax relief may apply if your parent is your dependent. And veterans' families should look at the VA programs. Every one of these runs on documentation. [3, 4]
Sources and what they support
Sources checked 2026-09-19 using AI-assisted editorial research. This is a source check, not tax or financial advice.
- AARP Research, Caregiving Out-of-Pocket Costs Study (2021). Supports the sample of about 2,380 family caregivers and the field dates of 15 March to 25 April 2021, that nearly eight in ten reported routine out-of-pocket expenses with 5% reporting none, the $7,242 typical annual total, the 26%-of-income figure, the category counts (about half with household-related expenses, 30% rent or mortgage, 21% home modifications, 17% medical), that about a third reported two or more work-related strains averaging $10,525, that about half experienced financial hardship, and AARP's statement that strain was greater on Latinos and African-Americans and on younger caregivers. A 2021 survey of a sample of family caregivers using a one-week diary annualised — not current prices, not all households, and an association between work strain and spending rather than proof of cause. It does not give separate averages for co-resident or dementia caregivers, which is why those figures have been removed from this page.
- AARP, family caregivers' high out-of-pocket costs. Supports that more than half of all reported spending went on housing costs, the $7,242 average reported by three-quarters of those surveyed, the quarter-of-income figure, and the $10,525 average among caregivers with two or more work-related disruptions being almost double those with none or one. AARP's own summary of the study above; the amounts are 2021 self-report and are not adjusted to today's prices.
- ACL, National Family Caregiver Support Program. Supports the five funded service categories including respite and expressly limited supplemental services, that funding goes as grants to states and territories, the eligible caregiver groups, and the Title IIIE basis. It funds services delivered through state and local aging networks; it is not a reimbursement scheme for a family's receipts, and local programs set intake, priority and availability.
- AARP, you can get paid as a family caregiver. Supports that all 50 states and the District of Columbia offer a version of self-directed Medicaid long-term-care services, and that caregivers are legally required to report wages as taxable income. Whether a particular person is eligible, and whether a relative may be hired, is a state Medicaid question.
- Administration for Community Living, Eldercare Locator. Supports the referral route to a local Area Agency on Aging. What any agency funds this year varies by county.
Corrected in this pass: the claim that the caregiver-support program funds respite and supplies "through every AAA" and "puts some of it back", which overstates a grant-funded service program as a reimbursement; the separate co-resident and dementia spending averages, which we could not find in the source; and "most states" for self-directed Medicaid, which AARP puts at all 50 and DC.