Caregiving Data

What Data is Being Collected? How is Data Being Collected? What Data Needs to be Collected?

18 thoughts on “Caregiving Data

  1. “In this special issue, we begin a conversation with the IO/OB community regarding the importance of studying the experiences of caregivers and their employing organizations.”

    “Caregiving has been linked to adverse psychological and physiological health outcomes as well as declining attitudes and performance at work, and national studies of working caregivers suggest that organizations stand to lose billions of dollars per year to productivity declines, tardiness, absenteeism, and turnover among employees with eldercare responsibilities.”

    Journal of Business and Psychology Article/Editorial
    Published: 04 May 2019
    Volume 35, pages 1–8, (2020)
    Eldercare and the Psychology of Work Behavior

  2. My reply (several weeks to a month or so ago)to a post in private Facebook group for ms caregivers, re: their “ms’er” could be told they’d get $1 million if they got to such & such appt at 11am, and he’d still have to have a bowel movement at 10:55 lol & yes, I can get up at 4am & scheduled to work at 7:30am and my “mser’s” bowels will decide to stir at 7:15am, when I’m trying to walk out the door. :

    I get this more than I can describe.
    Her dignity is most important so it feels safer to present as just consistently scattered & late & irresponsible than waste more emotional energy explaining only to be met with problem-solving, judgment, shame. I’m sure it’s also looked like I’ve used “highjacked by caregiving” as an excuse when not true and I haven’t. No time to make things up because it happens so much & you can’t make this shit up. Good grief, don’t need to. No time! lol but I’m no longer explaining that I’m no longer explaining that when mser’s starts, our day does often stop … l’m not explaining that it’s a huge celebration that she still gets warning in time from her body …
    I’m not explaining the celebration that she cramped, drove
    wheelchair to lift, connected to lift, wheelchair to lift, connected to lift, and got herself raised up just in time for it to release all over wheelchair seat pad… rather than happening while she’s sitting & it shooting up her back & out her front… covering pants, inviting uti, causing & worsening pressure wounds caused by this & catheter malfunctions leaks floods from backups… not explaining the pain, dangerous pressure to wounds & indignities I refuse to subject her to with a toileting schedule that’s proved irrelevant, painful, worse on her wounds and completely indignifying … not explaining how important to help her hang on to these shreds of independence regardless wtf ppl think they have business deciding for & about her … not explaining … totally get it O she’d stay silent & soiled to her death if there was a million dollars involved lol it’d still happen

  3. When do get to the part where it’s accepted & normalized that the patient is acknowledged , recognized & celebrated as a customer to be served by our healthcare industry? How will we make it safe to stand for patients being respected as customers?

    Where are we capturing the home health schedules preceding caregiver & patient schedules?

    Where are we capturing the barrage of unscheduled or delayed visits, the gaslighting as if we just forgot to write it down when they call to “confirm?”

    I’ve tracked our own experience of this on & off for 24 years, but the chaos does keep it challenging & inconsistent.

    I’ve had my workday highjacked by this enough times that an algorithm could likely be created, just from our own rough “data,” to predict exactly when I can expect to have my workday highjacked, with how much notice, when we can expect a no-show, how long they will sit in car in front of house before approaching, when we’ll be gaslighted, on & on.

    1. Text to friend Thursday 3/15/24:

      It’s been insane here for a solid month lol 3 weeks of poop drama, almost a week “off” from drama last week, then back to it Monday with er to fix her catheter.

      Then the [!*#] thing didn’t work/hasn’t worked since/still.

      So she woke up soaked Tuesday morning & it’s been on since.

      Finally got [home health company we love] nurse on call here at 10am today. She was concerned that something else going on because she met resistance inserting new [suprapubic] catheter … but it might be working because so far she hasn’t peed the normal way & soaked her bed pad again!

      So we got the call from [home health company we love] after 4 yesterday that on call nurse can be here at 10am today to try to fix catheter, then at [!*#!] 7:56pm/last night, I get a call from [Home Visiting Primary Care Provider’s] Lab INFORMING me that they’re coming between 1-3 today to draw blood for labs ordered by her [Home Visiting Primary Care Provider’s] Nurse Practitioner .. that’s her primary care who comes to her home

      So. Real [!*#!] glaaaaad I wasn’t looking forward to a fun day at [part-time job I love] scheduled 7:30-12 & 12:30-5. Grrrr. I’d have had to call in & explain that my day got highjacked after 4 [!*#!] pm yesterday with 2 unplanned appointments today.

      This is such [!*#!]. When I researched this doing school 2 years ago, the number was estimated at 48 million unpaid caregivers causing a black hole in our economy costing $44 billion due to job loss due to tardiness & absenteeism.

      Now when I look it up, the number of unpaid caregivers is already up to like 62 million.

      This is the reason carefume came about.



  4. “Caregiving is an important topic that directly impacts the lives of millions of Americans. Approximately every five years, the National Alliance for Caregiving (NAC) and AARP conduct a survey to look at family caregiving in our nation. They have released their most recent research report, Caregiving in the U.S. 2020, and some of their findings are quite surprising.”

    State of Unpaid Family Caregiving in the US

  5. We used the cross-sectional 2013 RAND Survey of Military and Veteran Caregivers, a survey of 3876 caregivers and non-caregivers aged 18 years and older to conduct multivariable analyses and calculate average marginal effects, focusing on the association between intensive caregiving (i.e., providing ≥ 20 h of weekly care) and six economic outcomes: schooling, labor force participation, taking unpaid time off of work, cutting back work hours, quitting a job, and early retirement.“

    Economic Spillover Effects of Unpaid Caregiving

  6. “At-a-Glance
    The National Health and Aging Trends Study (NHATS) gathers information from a nationally representative sample of Medicare beneficiaries ages 65 and older. Annual, in-person interviews collect detailed information on the disablement process and its consequences. The sample is refreshed periodically so that researchers may study national-level disability trends as well as individual trajectories.“

    National Study of Caregiving

  7. “Methodology

    Data was gathered March 15 through April 25, 2021 from a survey and diaries among a sample of 2,380 family caregivers balanced for representation by race. Respondents qualified if they helped an adult relative or friend with unpaid care such as managing medications, finances, household chores, transportation, or activities of daily living. Caregivers completed a retrospective survey of their expenses incurred and then participated in a diary study to track their spending on caregiving costs for a week. The information was used to produce an annualized figure.

    For more information, please contact Laura Skufca at or Chuck Rainville at For media inquiries, contact“

    Family Caregivers Cost Survey

  8. “My colleagues and I recently presented a workshop on innovative methods for data collection in family caregiving research at the 14th International Family Nursing Conference in Washington, DC. Our emphasis was on the use of technology and digital methods. We also provided examples of how to translate more traditional methods of data collection, such as surveys and focus groups, to online platforms using specific research-based exemplars for how to implement these methods successfully.“

    Innovative Data Collection Methods for Family Caregiving Research

  9. “A caregiver—sometimes called an informal caregiver—is an unpaid individual (for example, a spouse, partner, family member, friend, or neighbor) involved in assisting others with activities of daily living and/or medical tasks. Formal caregivers are paid care providers providing care in one’s home or in a care setting (day care, residential facility, long-term care facility). For the purposes of the present fact sheet, displayed statistics generally refer to caregivers of adults.

    The figures below reflect variations in the definitions and criteria used in each cited source. For example, the age of care recipients or relationship of caregiver to care recipient may differ from study to study.“

    Caregiver Statistics/Demographics

  10. “At the end of last year, we surveyed some of the family caregivers we serve to learn more about their responsibilities as well as the challenges they face. Though their responses varied, a series of patterns emerged. In this article, we highlight those patterns, provide the supporting data, and take a closer look at things we can do to make life easier for these American heroes.”

    State of the Caregiver

  11. “The caregiving data presented in this brief were collected from community-dwelling adults 45 years of age and older in 2015-2017 through the Behavioral Risk Factor Surveillance System (BRFSS).4 Questions related to caregiving were administered as part of the Caregiver Optional Module in 44 states, the District of Columbia and Puerto Rico. For states administering the module during multiple years, the most recent data were used. Additional data reports can be generated and viewed through the CDC Healthy Aging Data Portal“

    Caregiving for Family & Friends: A Public Health Issue

Leave a Reply

Your email address will not be published. Required fields are marked *