By John Schall, CEO of Caregiver Action Network, and Joy Yoo (Data Analyst, Houston Methodist Research Institute; Researcher, Physician-Patient Alliance for Health & Safety)

The Key Role of Family Caregivers in Delivering Healthcare

Family caregivers have become an essential key to providing patient care. As Richard Adler & Rajiv Mehta of the National Alliance for Caregiving write:

Millions of Americans are currently providing care for a family member, friend, or neighbor, typically because of illness, injury, or frailty. Their efforts range from providing emotional support and helping with routine household tasks to providing care 24×7 and carrying out complex medical procedures. Though those receiving care are of all ages, the amount of caregiving will certainly rise as our population ages.

Many of the functions that caregivers play are similar to those provided by nurses. It is therefore essential that healthcare professionals work collaboratively with caregivers to ensure that their patients are receiving the optimal care.

In particular, family caregivers have a more in-depth and intimate knowledge of their loved ones than anyone else on the care team. Family caregivers see the patient in their own homes and for a longer period of time than anyone in the provider community.

They are experts on their loved one and want to share that information so that you get a full picture of who their loved one is. They are your source of medical history but also more intimate details, like what their loved one’s preferences are.

Having knowledge about some of these preferences can make a world of difference in how you approach the one-on-one care that you provide, ultimately making your job a little easier, while ensuring the patient receives the best possible care.

As Susanne White, Caregiver Warrior, says:

“When health care professionals view caregivers as part of the wellness team, they can all work together to ensure a postive healing experience for the patient. Access to information and consistent communication between clinicians and caregivers creates the best environment for postive results. When everyone is on the same page and efforts are coordinated, healing the patient is optimized.”

Because family caregivers are with their loved ones in several care settings – hospitals, doctors’ offices, specialists, and their loved one’s residence – they have an irreplaceable personal knowledge of their loved one.

An example of this is medication. A family caregiver knows not only what medications their loved one is taking but knows how they prefer to take their meds. A family caregiver knows what medication their loved one has been prescribed for let’s say high blood pressure, and they also know that the patient likes to take it in the morning with their coffee.

For example, a family caregiver knows that their loved one with Parkinson’s starts to experience increased tremors during the afternoon, during let’s say an off period, and that they sometimes need to adjust their daily routines or plans for the day because of this.

Family caregivers are often the ones who administer the medication – and yes, that does include injections. It’s likely that they know the preferred injection site and how to put them at ease while administering.

Family caregivers are extremely good observers of the side effects of medications. They also know which medications did not work in the past. The work of managing multiple medications can be difficult, but is crucial. Medication mishaps are one of the leading reasons that seniors end up in a hospital or emergency room. Additionally, the mismanagement of medications, particularly for those individuals taking more than four prescriptions, is a leading cause for falls among seniors.

Take advantage of the knowledge that family caregivers possess. They are with their loved one daily and so they have a more personal understanding of them, including preferences and routines. Having this fuller context can often save you some steps along the way, and also improve the patient’s experience and quality of care.

Tips for Working with Family Caregivers

Here are 11 tips for how healthcare professionals can partner with caregivers to improve patient care:

1. Actively ask if they need help – In a study led by researchers at the Johns Hopkins Bloomberg School of Public Health, less than one-third of caregivers were asked by healthcare workers if they needed help
2. Support the development of better concept maps, language, and data to understand your patients’ needs and the impact of caregiving activities on health and financial outcomes – For example, the Caregiver Action Network reports: “Women who are family caregivers are 2.5 times more likely than non-caregivers to live in poverty and five times more likely to receive Supplemental Security Income (SSI). 47% of working caregivers indicate an increase in caregiving expenses has caused them to use up ALL or MOST of their savings.”
3. Work with strategists and consultants to develop business plans to support patient/family caregiving.
4. Develop procedures and technologies to more fully engage with family caregivers, realizing that bi-directional conversation with all key family caregivers is critical to success.
5. Better support own caregiving employees.
6. Consider family caregivers “essential frontline health workers” and help them secure face masks and other personal safety gear and teach them how to properly use it.
7. Use assessments and checklists to determine how well a caregiver can tend to their loved one at home.
8. Expand the use of telehealth to treat patients and be aware that some family caregivers are no longer in the same place as their loved ones (due to Covid).
9. Encourage individuals to get their papers in order, including directives that will steer their care if they can’t make decisions for themselves.
10. Thank caregivers for their work, especially during these challenging times, and acknowledge the extraordinary circumstances we’re all facing – In a study led by the Yale School of Public Health, researchers concluded, “The findings suggest that spouses caring for a partner feel happier and report fewer physical symptoms when they believe their help is appreciated.”
11. Seek out information from caregiving organizations such as the Family Caregiver Alliance, National Alliance for Caregiving, and community groups for guidance and resources and share it with those in need.

• Practices & Tips