Bringing caregivers into the conversation

November 13th, 2019

About 34.2 million Americans provide unpaid care to an older adult, helping them with daily activities such as transportation, bathing, cooking, and accessing medical care. An additional 2 million home care workers provide assistance to older adults with daily activities and health care support.

Nearly 10 million older adults received help from a caregiver in 2011, about one-quarter of older adults. However, more than 50% of adults over 85 received help from a caregiver. As the U.S. population ages, caregiving from both family members and home health aides will become undoubtably become even more prevalent. 

However, despite the increasing importance of caregivers in the lives of older adults, health care systems are not always built to accommodate caregivers into the care team. According to a 2015 AARP survey, only one-third of caregivers say that a health care provider asked them about what we needed to care for the recipient.

In a recent perspective piece in JAMA Internal Medicine, Dr. Madeline R. Sterling and Dr. Amy L. Shaw at Weill Cornell hospital write about the need to integrate both formal and informal caregivers into health care for older adults. Sterling and Shaw point out that information about caregivers is not always included in patients’ medical records, so physicians may not always be aware that there are other people providing care for their older patients. Additionally, most physicians do not receive any education on caregivers during their training or in continuing education, they write.

Without this information and training, it is less likely that doctors will include caregivers in conversations about the patient’s health care. This is an unfortunate missed opportunity because, when caregivers are included (with the patient’s consent), they can provide essential information to clinicians about the patient’s health. Including caregivers who assist with health care needs at clinician visits can also ensure that any new treatments or medications are implemented at home as necessary.

Sterling and Shaw give an example of a patient who brought her home health aide and her daughter (virtually) to their visits:

After several months, and many more 4-person visits, I realized that each of us played an essential but distinct role in Yanick’s care. While I always directed my questions toward her, Marie and Christine often chimed in with important observations or questions.

“Did you tell the doctor about your stomach pain?” Marie whispered at the end of a visit, during which Yanick spent the majority saying she felt fine.

“Doc, did the records arrive from the orthopedist?” Christine asked one afternoon. “They said something is wrong with mom’s knee.” Before she mentioned this, I didn’t know that Yanick had been to another orthopedist for a second opinion.

Sterling and Shaw offer recommendations for clinicians who see older patients, to help integrate their caregivers into their health care. They recommend that clinicians ask patients about their caregivers’ roles when taking a medical history and record this information in the medical record. Clinicians should also be sure to ask patients’ permission to involve caregivers at medical visits. Because caregiver roles and patient preferences may change over time, clinicians should reassess this information periodically.

All of these recommendations will require clinicians to recognize the crucial role that formal and informal caregivers play in the health and well-being of many older adults. Welcoming caregivers to participate in clinical visits, with patient consent, is an important way to support both older patients and caregivers.