The Importance of Identifying Caregivers

Note: A caregiver (or care partner) supports an older adult with physical, psychological, financial, spiritual, or other issues related to health. This role may differ from related supports, such as an emergency contact or healthcare proxy.

There has been a lot of buzz lately in the news and media about who is caring for the caregiver. Stories from celebrities (Dolly Parton; Jon Batiste; Sandra Bullock; Betsy Arakawa, wife of Gene Hackman), superheroes (Spider-Man), and everyday people are bringing increased attention to the continued reality of caregiver isolation and the risk of neglecting one’s own health while caring for others. Recent alarming statistics show the widespread nature of this urgent need to support caregivers. Individual stories help us put a face and name to the people who share their time, energy, and emotions while their own health and well-being gets buried.

In the Age-Friendly Health Systems movement, identifying caregivers is a key priority. We and our partners are working to help healthcare sites uncover these stories, understand caregivers’ needs and burdens, and ultimately link them to support. That support not only can improve the caregivers’ health and well-being but also that of the older adults they care for. Holistic and age-friendly care for an older adult must include anyone who cares for them. The first step is identifying the caregiver — by asking, listening, and then documenting that person(s) in their medical record, so everyone delivering healthcare for the older adult across the continuum knows who is supporting them.

Taking Action at Maimonides Medical Center

Recognizing that caregiver well-being directly affects patient outcomes, Maimonides Medical Center in Brooklyn, New York has made identifying, assessing, and supporting caregivers a key part of its care strategy. They are part of a growing number of healthcare sites implementing the Caring for Caregivers program developed by Rush University Medical Center. Khadeja Kausar, Director, Business Intelligence and Value Based Management Analytics at Maimonides, describes the work:

“At Maimonides Health, a caregiver’s questions and anxieties matter to our clinicians as much as the patient’s clinical condition. Hearing about a new diagnosis, or learning to manage a Foley catheter, a colostomy bag, PEG tube feeding, or IV antibiotics at home, can bring the caregiver the same fear and uncertainty the patient feels, often with far less support. Taking on that responsibility can also come at the expense of their own health and well-being. Yet for years, caregivers, the backbone of patient care, were invisible — not just in our records but across healthcare. The emergency contact field told us whom to call, not who would be caring for the patient once they went home.

“Through our Caring for Caregivers initiative, we started with the most basic step: asking. We built caregiver identification into our electronic health record. Our clinicians ask every patient who helps them at home. Then, they document that person in a structured field that the whole care team can see. We also write the caregiver’s name on the whiteboard in the patient’s room, so everyone who walks in knows whom to include. More recently, we set a goal of doing this within the first 48 hours, so the caregiver is part of the plan from the start. 

“Identification has become the foundation for the next layer of support. Caregivers can be connected with a clinical social worker trained in the Rush Caring for Caregivers model to assess their needs and connect them with appropriate support. For example, resources might include a local organization such as the NY State Respite Voucher Program (for those in need of financial assistance for respite care) or a national organization like Caring with Pride (offering inclusive caregiving information for LGBTQ+ caregivers). 

“At Maimonides, we are currently developing a verified internal list our team can use for easier referrals. The list includes the type of program, supports they provide, how to access the support, contact information, cost (if any), and languages supported. For caregivers with intensive or ongoing mental health needs, we have established a referral pathway to Maimonides outpatient mental health services. We are also developing a curated library of community resources and an on-site Caregiver Lounge to provide a dedicated space within the hospital with additional information and support.

“Our Patient and Family Advisory Council has been a partner throughout this work, helping us think about caregiver support from the perspective of patients and families. Our next step is to hear even more directly from caregivers themselves through focus groups, giving caregivers in our community an opportunity to tell us about the challenges they face, the support they are missing, and what would make the greatest difference to them.

“What began with a simple question — ‘Who helps you at home?’ — is helping us make caregivers visible, include them earlier, and build a more intentional system of support around both the caregiver and the person they care for.”

Resources for Getting Started

Through this work, Maimonides has increased their caregiver identification rate from below 20 percent to 60 percent. For organizations ready to take the next step, we have created resources that translate these experiences into practical strategies and tools for implementation. Tips to Identify and Document Caregivers of an Older Adult provides an overview of ways to get started, how to ask about caregivers, how to document in the electronic health record, and ways to continue the work. For organizations interested in learning from peers, the accompanying slide deck showcases Maimonides Health’s experience along with additional case examples, tips, resources, testimonials, and sample tools from healthcare sites. Our partner, Rush Caring for Caregivers (C4C), has an additional suite of support to help sites implement the program in their setting.

Patty Webster, MPH, is an Improvement Advisor and Faculty at the Institute for Healthcare Improvement. Amanda Meier, BSW, MA, is an IHI Project Manager for Age-Friendly Health Systems.

Photo by Leiada Krözjhen.

You might also be interested in:

• Caring for the Caregivers Is Part of Optimal Age-Friendly Care
• Recognize Caregivers as Star Players on the Team