New Family Caregiver Report


The National Academies of Sciences, Engineering, and Medicine has just published Families Caring for an Aging America, a substantive look at the role of family caregivers and needed changes in the health care delivery system.

Importance of family caregivers

According to their data, 17.7 million Americans are caring for an older adult. They are central to the elder’s ability to access health services and are often the sole continuity of care from one provider/setting to another. This is not news to us at Elder Pages OnlineWe daily recognize the key role that family members play in keeping their loved ones safe, engaged, and as healthy as can be. Still, it’s WONDERFUL to see the federal government sit up and take notice!

Reduced use of services

When family members are available, older adults have fewer (and shorter) hospital stays. There are fewer readmissions. There is a decrease in emergency room costs and in home health care services. And nursing home placement is significantly delayed, an important consideration in terms of patient quality of life, not to mention its financial impact on the Medicare/Medicaid system.

Family caregivers are generally ignored…

Despite their critical role in the delivery of health care services, the report acknowledges that family caregivers are largely ignored. Providers are not geared (or compensated) to communicate with these key members of the “team.”

 …Yet expected to provide skilled care

At the same time they are given short shrift by the health care system, family caregivers are expected to be available 24/7 and to make sure the care plan is followed. They are called upon to do things such as administer medications, give injections, clean wounds, or fine-tune oxygen machines—all with scant training.

HIPAA backfires

Another significant barrier for communication with family caregivers is the misinterpretation of HIPAA rules. Although the rules are intended to safeguard patient privacy, fear of HIPAA violations can result in family caregivers being denied access or communication about their loved one’s condition. Even those with a signed healthcare power of attorney experience resistance.

Recommendations of the study

  1. Identification, assessment, and support of family caregivers. Knowing who the primary caregiver is, is a great start! The report also emphasizes that assessing family caregiver well-being and supporting family caregivers in their vital role is key to maintaining the benefits provided by engaged family members. It suggests an assessment of family caregiver availability, capacity, and willingness to help, as well as caregiver risks, needs, strengths, and preferences.
  2. Inclusion of family caregiver experiences in measurements of quality. Because family members have a general understanding of their relative’s “normal” state, their insights can be instructive across settings and providers. Although they may have biases, as anyone does (including the patient), they can also help “fill out” the picture, especially if an elder has cognitive impairments.
  3. Support for family caregivers through better health information technology.Not only should the families (with patient permission) have access to electronic medical records, but the electronic medical records should be modified to include family caregiver contact information and family caregiver reports about the patient.
  4. Prepare care professionals to deliver person- and family-centered care. All the systemic changes noted above will not be nearly as effective if staff members do not recognize the importance of working in a team context with the patient and family. Medical schools and nursing schools need to emphasize shared decision making and expand the frame of reference to include the wider context of the family.

A very good step forward

Change is slow in a system as big as ours. But change does happen. National recognition of the role of family caregivers is a superb first step. Quality of care will improve only as the health care system acknowledges and addresses the fact that a patient is a whole person (more than just their disease) and that they exist within the larger construct of their family circle.