39% of U.S. adults are caregivers and many navigate health care with the help of technology

Four in ten adults in the U.S. are caring for an adult or child with significant health issues, up from 30% in 2010. Caring for a loved one is an activity that cuts across most demographic groups, but is especially prevalent among adults ages 30 to 64, a group traditionally still in the workforce.

Caregivers are highly engaged in the pursuit of health information, support, care, and advice, both online and offline, and do many health-related activities at higher levels than non-caregivers.

Indeed, being a caregiver is independently associated with key health-related activities. When controlling for age, income, education, ethnicity, and good overall health, caregivers are more likely than other adults to:

• Gather health information online, particularly about medical problems, treatments, and drugs.
• Gather health information offline, from clinicians, friends, family, and others who share the same health condition.
• Go online specifically to try to figure out what condition they or someone else might have.
• Consult online reviews about drugs and other treatments.
• Track their own weight, diet, exercise routine, or other health indicator.
• Read online about someone else’s personal health experience (which, in the case of caregivers, could be related to their own or their loved one’s condition).
• Go online to find others with similar health concerns (again, there may be dual motivations to connect — to find more information about handling caregiver stress, for example, or about their loved one’s health challenges).

In a previous study by the Pew Research Center, 47% of U.S. adults say it is likely that, at some point in their life, they will be responsible for caring for an aging parent or another elderly family member.¹ Demographic patterns bear out this prediction: People ages 65 and older represented 12.4% of the U.S. population in the year 2000 but are expected to be 19% of the population by 2030.²

This survey finds that fully 75% of U.S. adults age 65 and older are living with a chronic condition such as high blood pressure, diabetes, or heart disease. Numerous studies have shown that the day to day management of these complex medical cases falls squarely on family members and friends who may not be trained. But, as this study shows, caregivers are turning to every resource available to get the information and support they need.

39% of caregivers manage medications for a loved one; few use tech to do so

Thirty-nine percent of caregivers manage medications for a loved one, such as checking to be sure pills are taken properly or refilling prescriptions. Just 7% of caregivers use online or mobile tools, such as websites or apps, to do so.

Nine in ten caregivers own a cell phone and one-third have used it to gather health information

Eighty-seven percent of caregivers in the U.S. own a cell phone and, of those, 37% say they have used their phone to look for health or medical information online. This is a significantly higher than the rate of mobile health search among non-caregivers at the time of the survey: 84% of non-caregivers own a cell phone and 27% have used their phone to look online for health information.

Most caregivers say the internet is helpful to them

When asked about the specific impact of the internet:

• 59% of caregivers with internet access say that online resources have been helpful to their ability to provide care and support for the person in their care.
• 52% of caregivers with internet access say that online resources have been helpful to their ability to cope with the stress of being a caregiver.

About this study

The results reported here come from a nationwide survey of 3,014 adults living in the United States. Telephone interviews were conducted by landline (1,808) and cell phone (1,206, including 624 without a landline phone). The survey was conducted by Princeton Survey Research Associates International. Interviews were done in English and Spanish by Princeton Data Source from August 7 to September 6, 2012. Statistical results are weighted to correct known demographic discrepancies. The margin of sampling error for the complete set of weighted data is ±2.4 percentage points. In this survey there are 1,171 respondents who are caregivers. Margin of error for results based on caregivers is ±4 percentage points.

The Pew Internet & American Life Project is an initiative of the Pew Research Center, a nonprofit “fact tank” that provides information on the issues, attitudes and trends shaping America and the world. The Project is nonpartisan and takes no position on policy issues. Support for the Project is provided by the Pew Charitable Trusts.

Support for this study was provided by the California HealthCare Foundation, an independent philanthropy committed to improving the way health care is delivered and financed in California.

The authors gratefully acknowledge the contributions of community peer reviewers Denise Brown, Lynn Feinberg, Rajiv Mehta, John Novack, and MaryAnne Sterling.

39% of U.S. adults are caregivers

Bathing and dressing someone who needs help, driving to doctor appointments, sorting through paperwork, making sure this pill is taken with breakfast and that pill at bedtime—these hands-on, caregiving activities define the word “offline.”

Yet, these days, caregivers are health information specialists. They have the safety, comfort, and even the life of a loved one in their hands. They are asked to perform a dizzying array of medical and personal tasks outside clinical settings and the stakes are very high.⁷ Caregivers display what we at the Pew Research Center have identified as a core social impact of the internet: the ability to quickly gather information on a complex topic to make decisions.

This national survey by the Pew Research Center’s Internet & American Life Project, supported by the California HealthCare Foundation, finds that caregivers are highly likely to gather advice from clinicians, family, friends, and peers; to track their own and their loved ones’ health data; and to use the internet to research health conditions and treatments.

We find that being a caregiver is a special factor highly correlated with certain kinds of online information seeking. When controlling for age, income, education, ethnicity, and good overall health, caregivers are more likely than other internet users to:

• Gather health information online, particularly about medical problems, treatments, and drugs.
• Go online specifically to try to figure out what condition they or someone else might have.
• Consult online reviews about drugs and other treatments.
• Track their weight, diet, or exercise routine.
• Read online about someone else’s personal health experience.
• Go online to find others with similar health concerns.

An aging population and a rise in the percentage of people living with chronic conditions means that the United States will need to increasingly rely on family caregivers to provide front-line health care. This study presents evidence about how caregivers currently gather, share, and create health information and support.

Caring for both children and adults with significant health challenges

To measure the population of U.S. adults who provide care to loved ones with significant health issues, we asked a series of questions beginning with:

In the past 12 months, have you provided unpaid care to an adult relative or friend 18 years or older to help them take care of themselves? Unpaid care may include help with personal needs or household chores. It might be managing a person’s finances, arranging for outside services, or visiting regularly to see how they are doing. This person need not live with you.

Some 36% of U.S. adults say they provided such unpaid care to an adult in the past year, up from 27% in 2010.

Those respondents were then asked:

Do you provide this type of care to just one adult, or do you care for more than one adult?

Two-thirds (66%) of that group say they care for one adult, which represents one-quarter of the U.S. population ages 18 and older. One-third (34%) of people who are helping an adult relative or friend say they care for more than one adult.

Half (47%) of those who care for adults say at least one is their parent or parent-in-law.

Separately, we asked:

In the past 12 months, have you provided unpaid care to any child under the age of 18 because of a medical, behavioral, or other condition or disability? This could include care for ongoing medical conditions or serious short-term conditions, emotional or behavioral problems, or developmental problems, including mental retardation.

Eight percent of U.S. adults say the provided unpaid care to a child living with health challenges or disabilities, up from 5% in 2010.

In sum, 39% of U.S. adults are caregivers, up from 30% in 2010.⁸ As the U.S. population ages and medical advances save and extend more lives, caregiving is likely to become a more common role than it has ever been before.

Who are caregivers?

Caregiving touches every segment of the population. Men and women are equally likely to be caregivers. People of all age groups provide care for loved ones, with a slightly higher percentage of those ages 30-64 saying they do so. Caregivers are more likely than other adults to be married and to be employed full time.

They are also more likely than non-caregivers to have gone through a recent health crisis or to have experienced a significant change in their physical health (including positive changes, such as quitting smoking). (See Appendix for detailed tables.)

This finding dovetails with clinical studies showing that the stress associated with caregiving has an independent, negative effect on people’s health.⁹

Caregivers are wide-ranging online health information consumers

Fully 86% of caregivers have internet access, compared with 78% of non-caregivers. And 84% of caregivers with internet access say they went online within the past year to research health topics such as medical procedures, health insurance, and drug safety. By comparison, 64% of non-caregivers with internet access say they did online health research in the past 12 months.

For brevity’s sake, we will refer to those who research health topics as “online health seekers.” When calculated as a percentage of all U.S. adults, not just internet users, 72% of caregivers are online health seekers, compared with 50% of non-caregivers.

When controlling for age, income, education, ethnicity, and good overall health, being a caregiver increases the probability that someone will go online to look for health information. Living in a higher income household and reporting a higher level of education also increases someone’s likelihood to do health research online. Being age 40 or older decreases the probability that someone will do this type of research online.

We tested four topics and found that these patterns held for each one, that is, being a caregiver has an independent effect on someone’s likelihood to look online for information about:

• A specific disease or medical problem
• A certain medical treatment or procedure
• Drug safety or recalls
• A drug they saw advertised

In other words, caregivers’ appetite for certain kinds of online health information is related to their home health care role, independent of other demographic factors.

Most caregivers say the internet has been helpful to them

When asked if online resources are helpful:

• 59% of caregivers with internet access say that online resources have been helpful to their ability to provide care and support for the person in their care.
• 52% of caregivers with internet access say that online resources have been helpful to their ability to cope with the stress of being a caregiver.

Younger caregivers are more likely than older ones to report that the internet has been helpful to their ability to provide care and support: 70% of caregivers ages 18-29 say that, compared with 51% of those ages 50-64 years old. Two-thirds of male caregivers say the internet has been helpful in this way, compared with 55% of female caregivers.

Younger caregivers are also more likely than older ones to say the internet has been helpful in coping with related stress: 70% of caregivers ages 18-29 say that, compared with 43% of those ages 50-64 years old. There was no difference between men and women on this question, nor were there any other notable demographic differences.

Eight in ten online health inquiries start at a search engine

When asked to think about the last time they searched online for health information, 79% of caregivers who are online health seekers say they started at a search engine such as Google, Bing, or Yahoo. Fourteen percent started at a site that specializes in health information, such as WebMD. Just 1% say they started at a more general site like Wikipedia and another 1% started at a social networking site like Facebook. There are no significant differences between caregivers and non-caregivers when it comes to starting an online health inquiry at a search engine, specialized health website, or other site.

Overall, this matches what we found in our first health survey more than a decade ago. Then, as now, eight in ten online health seekers are likely to start at a general search engine when looking online for health or medical information.

Caregivers are likely to say their last health search was on behalf of someone else

Caring for others’ information needs is a common activity among all internet users. Half of all health searches are conducted on behalf of someone else. This long-standing pattern, measured in our first health survey in the year 2000, is particularly pronounced among caregivers: 63% say their last search was at least in part on behalf of someone else, compared with 47% of non-caregiver online health seekers.

Nearly half of all caregivers have gone online to try to figure out a possible health diagnosis

Fully 46% of caregivers say they have gone online specifically to try to figure out what medical condition they or someone else might have. By comparison, 28% of all non-caregivers say they have done so. Note that these results are based on all U.S. adults, not just on internet users.

When controlling for age, income, education, ethnicity, and good overall health, being a caregiver greatly increases the probability someone will go online for a diagnosis. Living in a higher income household, being college educated, and being white each have an independent effect, increasing the likelihood of someone going online to try to figure out a medical condition. Being age 40 or older decreases the likelihood.

Medication management is a significant challenge for many caregivers

A 2012 study by the AARP Public Policy Institute and the United Hospital Fund reported that nearly half of caregivers perform complex medical and nursing care at home, such as managing multiple medications, preparing meals to adhere to a special diet, and attending to wounds.¹⁰ Caregivers reported that these tasks are difficult and many would like to receive training, particularly for medication management since the result of making a mistake is so dire.

In order to build on those findings, we asked caregivers:

Do you manage medications for the people you help care for, such as checking to be sure they are taken properly or refilling prescriptions, or is this not something you do for them?

Thirty-nine percent of caregivers say yes, they manage medications. Women are more likely than men to say they manage a loved one’s medications: 47% of female caregivers do so, compared with 38% of male caregivers. Caregivers age 30 and older are more likely than those between the ages of 18 to 29 to say they manage medications. There are no significant differences among education, income, or ethnic groups.

Of those who manage medications, 18% say they use online or mobile tools, such as websites or apps, to do so, which translates to 7% of all caregivers. College graduates are the most likely group to use technology to track medications. Otherwise, there are no significant differences among caregivers along age, income, or ethnic lines.

Nine in ten caregivers own a cell phone and one-third have used it to gather health information

Eighty-seven percent of caregivers in the United States own a cell phone and, of those, 37% say they have used their phone to look for health or medical information online. This is significantly higher than the rate of mobile health search among non-caregivers at the time of the survey: 84% of non-caregivers own a cell phone and 27% have used their phone to look online for health information.

Paywalls do not deter most caregivers; few actually pay

Thirty percent of caregivers who look online for health information say they have been asked to pay for access to some type of health information they wanted to see online, compared with 22% of non-caregivers who are online health seekers. Caregivers are tenacious: 89% of those who hit a pay wall say they tried to find the same information somewhere else; 9% gave up; 1% paid the fee. By comparison, 76% of non-caregivers who hit a paywall tried to find the information somewhere else; 19% gave up; 4% paid the fee.

Clinicians are a central resource for information or support during serious health episodes—and the care and conversation take place mostly offline

Many caregivers seem to leave no stone unturned when it comes to gathering health information, online or offline, in moments of calm or crisis. In order to capture a typical episode, we asked respondents to think about the last time they had a serious health issue and to whom they turned for help:

• 79% of all caregivers got information, care, or support from a doctor or other health care professional.
• 70% of caregivers got information or support from friends and family.
• 30% of caregivers got information or support from others who have the same health condition.

By comparison, non-caregivers are significantly less likely than caregivers to turn to each of these sources:

• 64% of all non-caregivers got information, care, or support from a doctor or other health care professional.
• 54% of non-caregivers got information or support from friends and family.
• 21% of non-caregivers got information or support from others who have the same health condition.

It is worth noting that caregivers are more likely than non-caregivers to tap all three sources both online and offline. For example, 28% of caregivers say they got online and offline advice and support from family and friends, compared with 14% of non-caregivers. Thirteen percent of caregivers were in contact with a clinician both online and offline, compared with 5% of non-caregivers. And 10% of caregivers obtained online and offline information and support from people who shared the same health condition, compared with 5% of non-caregivers.

When controlling for age, income, education, ethnicity, and good overall health, being a caregiver increases the probability someone will get information from a health care professional, from friends and family, and from people who share the same health condition. In other words, there is a “caregiver effect” that extends to offline health information-gathering, too. 

Some seek counsel from fellow patients and caregivers

As noted above, 30% of caregivers sought information, care, or support from other people who share the same concerns during their last serious health episode. We have written about this phenomenon in detail in previous reports, such as “Peer-to-peer Health Care,”⁸ and it is worth noting that caregivers are significantly more likely than non-caregivers to pursue this type of advice and support online.

Indeed, caregivers are more likely than non-caregivers to engage in a range of online activities related to health:

When controlling for age, income, education, ethnicity, and good overall health, being a caregiver increases the probability that someone will read others’ commentary or experience about health or medical issues online. Being college-educated also increases someone’s likelihood of taking in user-generated health content, such as on a blog or in a video.

Of the 11% of caregivers who posted a health-related question or comment online:

• 45% say they posted comments or stories about personal health experiences
• 16% say they posted specific health questions
• 38% say they posted both

Fully 84% of caregivers who posted a comment, story, or question about their health say that they did so to reach a general audience of friends or other internet users. Eleven percent say they posted somewhere specifically to get feedback from a health professional. Two percent replied that they posted for both a general and a professional audience.

In addition, there is a “caregiver effect” when it comes to using the internet to find other people who share the same health concerns. When controlling for age, income, education, ethnicity, and good overall health, being a caregiver increases the probability that someone will report going online to find peers. Education and ethnicity also play independent roles: being college educated or white also increase the likelihood that someone has gone online for this purpose. By contrast, being age 40 or older decreases the probability of going online to find others with the same health concerns.

One in four online caregivers have consulted reviews of drugs or treatments

One area of online peer advice that continually confounds industry observers is the relative unpopularity of rankings and reviews of doctors, hospitals, and drugs. While 8 in 10 internet users say they have researched a general product or service online, only 2 in 10 internet users have looked up health care reviews.

Caregivers are potentially a ripe market for this type of service. They are more likely than non-caregivers to both read and write health care reviews, as shown in the table below.

Since caregivers’ interest in drug information is particularly high, we tested the significance of the findings related to drug reviews. When controlling for age, income, education, ethnicity, and good overall health, being a caregiver increases the probability that someone will consult online reviews of drugs or medical treatments. Being college educated or wealthier also increases the probability of this consumer-oriented behavior, while being age 40 and older decreases it.

Seven in ten caregivers track a health indicator for themselves

Fully 72% of caregivers track their own weight, diet, exercise routine, blood pressure, blood sugar, sleep patterns, headaches, or some other health indicator. By comparison, 63% of non-caregivers track some aspect of their health. When controlling for age, income, education, ethnicity, and good overall health, being a caregiver increases the probability that someone will track a health indicator.

Education and age also play a role. Being college-educated increases someone’s likelihood to track their weight, diet, or exercise routine. College-educated adults, however, are less likely to track other health indicators like blood pressure, blood sugar, sleep patterns, or headaches, possibly because they are less likely to be living with a chronic disease or other health condition. Being younger (between the ages of 18 and 39) is also independently associated with a lower likelihood to track other health indicators.

One in three caregivers track health indicators or symptoms for their loved one

Thirty-one percent of caregivers keep track of their loved one’s weight, diet, exercise routine, or other health indicators or symptoms. Female caregivers are more likely than their male counterparts to do so: 35% vs. 26%.

Tracking on paper, spreadsheet, mobile device—or just “in their heads”

When asked to think about how they track the health indicator they pay the most attention to, either for themselves or someone else, 44% of caregivers who track say they do so “in their heads,” compared with 53% of non-caregivers who track.

Another 43% of caregivers who track say they use paper, like a notebook or journal, compared with 28% of non-caregivers who track.

Smaller groups say they use some form of technology to track their health data. Specifically:

• 8% of caregivers who track use a medical device, like a glucose meter
• 8% use an app or other tool on their mobile phone or device
• 6% use a computer program, like a spreadsheet
• 1% use a website or other online tool

There were no differences between caregivers and non-caregivers when it comes to the use of these types of technology.

Caregivers are more likely than other trackers to share their notes with someone else

Fully 41% of caregiver-trackers say they share their tracking data with someone else, compared with 29% of non-caregivers who track.

Of those caregiver-trackers who share their notes:

• 56% share with a health or medical professional
• 17% share with a spouse/partner
• 14% share with another  family member
• 8% share with a friend
• 10% share with their parent
• 6% share with their child
• 5% share with their sibling
• 1% share with members of a group, such as a church, community association, volunteer group, etc.
• 1% share with a personal trainer or health coach
• 5% share with someone else, not included in the above descriptions

These percentages are in line with non-caregivers’ responses, with two exceptions: non-caregivers are more likely than caregivers to share notes with a spouse and less likely to share with a parent. We did not ask if the person that caregivers share the data with is, in fact, their care recipient.

Caregivers are also likely to report tracking’s impact

Among trackers, people actively caring for a loved one are more likely than others to say this activity has affected them:

• 52% of caregivers who track say it has affected their overall approach to maintaining their health or the health of someone they help care for, compared with 41% of non-caregiver trackers.
• 50% of caregivers who track say it has led them to ask a doctor new questions or to seek a second opinion, compared with 32% of non-caregiver trackers.
• 44% of caregivers who track say it has affected a decision about how to treat an illness or condition, compared with 26% of non-caregiver trackers.

Seven in ten caregivers who track (72%) agree with at least one of the three statements about the impact of health data tracking, compared with 56% of trackers who are not currently caring for a loved one.

Detailed demographic tables

Caregivers are more likely than other adults to be married:

Caregivers are more likely than other adults to be employed full time:

Caregivers are as likely as non-caregivers to be living with a chronic condition. Caregivers are more likely than other adults to have gone through a recent health crisis or to have experienced a significant change in their physical health (including positive changes, such as quitting smoking).

When controlling for age, income, education, ethnicity, and good overall health, being a caregiver is associated with a higher likelihood that someone will have had a serious medical emergency or been hospitalized in the past 12 months. If someone rates their health as excellent or reports a higher household income, the likelihood of a health emergency or hospitalization decreases.

When controlling for age, income, education, ethnicity, and good overall health, being a caregiver increases the probability that someone will have had a major health change. However, if someone is age 40 or older, white, living in a higher-income household, or report their health as excellent, they are less likely to report a recent health change.

The 2012 Health Survey, sponsored by the Pew Research Center and the California HealthCare Foundation, obtained telephone interviews with a nationally representative sample of 3,014 adults living in the United States. Telephone interviews were conducted by landline (1,808) and cell phone (1,206, including 624 without a landline phone). The survey was conducted by Princeton Survey Research Associates International. Interviews were done in English and Spanish by Princeton Data Source from August 7 to September 6, 2012. Statistical results are weighted to correct known demographic discrepancies. The margin of sampling error for the complete set of weighted data is ±2.4 percentage points.

Details about design and data collection procedures, as well as survey results, can be found at:

https://alpha.pewresearch.org/pewresearch-org/internet/Shared-Content/Data-Sets/2012/September-2012–Health-Tracking-(prelim).aspx