the survey
The unpaid caregiver's week: what the survey data shows, and what to do about it
Two different CDC questions describe two different things about the same household. One counts how many older adults gave care last month. The other counts, among those caregivers, how many put in an average of 20 hours a week or more. If you are the one doing the work, the second question is the one that describes your Saturday.
This page does not add a third number. It tells you how to read the two this desk already publishes, and what to do in a week that looks like the heavier one. Every figure below already appears on the survey pages, with its question number, its year, and the CDC file it came from.
two questions
Hold Q36 in one hand and Q39 in the other
Question 36, survey year 2021, adults 65 and older: the share who provided care for a friend or family member within the past month. Missouri: 21.8 percent, rank 18 of the 48 states and territories that reported it. Illinois: 16.4 percent, rank 46. The United States row, which this desk does not rank, is 20.7 percent. Full table: family caregivers by state, 2021.
Question 39, same survey year, same age cut, a different group of people: among those older adults who are already giving care, the share averaging 20 or more hours a week. Missouri: 33.6 percent, rank 24 of 48. Illinois: 39.9 percent, rank 7. Full table: how hard caregivers are working, by state.
Read those two rows together and the picture for this metro is not "Missouri has more caregivers." Missouri has a larger share of older adults giving any care than Illinois does. Illinois has a larger share of its caregivers working a long week. The Midwest page puts the same two questions next to each other for the twelve Census Midwest states and the order flips: Missouri is 6th of 12 on who gives care and 3rd of 12 on hours. Illinois is last of the twelve on the first question and first on the second. Two questions, two orders. Do not blend them.
the week itself
Treat 20 hours as the line the survey already drew
The survey does not ask whether you are tired, whether you still have a job, or whether anyone else in the family is helping. It asks whether the week averaged 20 hours or more. This desk's own homepage already says the plain thing about that cut: twenty hours a week is half a job. Hold that when somebody in the family calls what you are doing "just helping out."
A third of Missouri's older caregivers sit on that side of the line (33.6 percent). In Illinois the share is higher (39.9 percent). The Midwest census region row, unranked, is 30.7 percent. None of those figures tells you whether your week is "normal." They tell you that a long unpaid week is common enough, in both states this metro sits in, that you should plan as if the work is real work.
If you want one national number to hold onto, use the United States caregiver-share row of 20.7 percent. Its 95 percent interval is 19.9 to 21.5, a width of 1.6 points, because it pools every state's answers. A state rank is a weaker thing. Missouri's 21.8 percent on Q36 sits in a range from 19.8 to 24.1, and that range overlaps 43 of the other 47 jurisdictions on the table. The survey margins page exists so you do not quote "18th of 48" as if it were a fact about your kitchen.
this Saturday
Spend the week on the house, the rides, and who else is on the list
The survey will not tell you what to do at 7 a.m. on a Saturday. The rest of this desk will. Use the week as a container for three jobs, in this order, because that is the order a household actually fails in.
- Walk the house before you hire anyone. Stairs, bathroom, rugs, lights, the path from the bed. The National Institute on Aging publishes the room list this desk follows. Do it on the visit you are already making. The room by room checklist is the tool. If paid help is about to start, do the walk first so the person who arrives is not the first one to notice the towel bar is doing the job of a grab bar.
- Name the routines that have already stopped. Meals, rides, errands. Those are the three that go first, and they have a public front door. Every address in this region sits inside one Area Agency on Aging. Three agencies cover the metro. Which one you call depends only on the county. The three numbers are on the reference page.
- Write down who else is in the week. The NIA's guidance on sharing the work starts by naming a primary caregiver and then splitting by task, not by day. Who does the pharmacy run, who does Sunday dinner, who sits the night after an appointment. Source: Sharing Caregiving Responsibilities, content reviewed October 12, 2023. A week with nobody named on those lines is a week that will fall on one person, which is how a 20 hour week becomes the only week you have.
If the week you are in started at a hospital door, the logistics are a different list and they have to be done before discharge, not after. This desk's first week home checklist is the local version. The companion guide written for that exact moment is After the Hospital STL.
what the survey cannot see
Do not wait for a number that measures how you are doing
Nothing in the CDC file measures burnout, mood, or whether you can keep this up. Q39 counts hours. That is all. If the week has started to crowd out sleep, work, or the rest of the family, that is not a survey finding. It is a reason to change the plan: split the tasks, call the Area Agency on Aging's caregiver programme, and, if the gap is hours in the house, look at paid help with the hiring questions in your hand. Missouri does not license non-medical help at home, so the questions are about records that actually exist, not about a licence number that does not.
The page on this network written to the adult child who is past the point of "helping out" is Burned Out Daughter. Use it when the hours page has told you the week is heavy and you still need language for what the hours feel like. This desk will not diagnose that for you, and it will not cheer you on. It will keep pointing at the house, the rides, and the other people who can take a task.
next