Why It Matters
Family caregivers provide invaluable support to millions of older adults around the world, but are too rarely the focus when considering ways to improve care.
When Noreen Bock, LCSW, began asking family caregivers about their well-being, some were caught off guard. In one case, a patient’s brother started off by answering the questions on behalf of his sister. “No, it’s about you,” Ms. Bock clarified. “He told me it was the first time anybody had asked him how he was doing.”
Ms. Bock is Director of Social Work at Jamaica Hospital Nursing Home (JHNH), a 228-bed nursing home and rehabilitation center, which is part of Jamaica Hospital Medical Center (JHMC), one of the leading health systems in Queens, New York. JHMC is a participant in Age-Friendly Health Systems, an initiative of the Institute for Healthcare Improvement (IHI) and The John A. Hartford Foundation, in partnership with the American Hospital Association and the Catholic Health Association of the United States. In Age-Friendly Health Systems, age-friendly care is defined as care that is based in the “4Ms”: What Matters, Medication, Mentation, and Mobility (see Figure 1).
Recently, IHI has deepened its commitment to supporting caregivers of older adults. The John A. Hartford Foundation has provided funding for Rush University Medical Center to partner with IHI on the Caregiver Intervention (4Ms-CGI) program, which has two goals: 1) transform how the staff of health systems think about and interact with family caregivers; and 2) provide programs and services for family caregivers to address their own needs and help them provide a reasonable amount of care for the older adult in their lives.
Rush and IHI engaged six pilot sites across three health systems for the 4Ms-CGI research study, to test and refine the model in their health care settings. One of the pilot sites was JHNH, where Ms. Bock took the lead. “We don’t always focus on the caregiver and their needs in addition to those of the patient’s,” said Ms. Bock. “Some caregivers clearly struggle, so we thought it would be a good project.”
The process starts with a meeting to get to know the caregiver. This includes a comprehensive evaluation of the caregiver to determine areas of strength and areas in which they need additional support. From there, the family caregiver may speak with a social worker or psychologist to connect with a variety of resources. They may also be referred to skill-building or care team planning meetings and participate in What Matters sessions, a dedicated time to discuss what matters to the caregiver and care recipient.
At JHNH, many residents receive subacute care and are admitted for short-term stays. To identify appropriate candidates to participate in the caregiver support pilot, Ms. Bock relied on the facility’s social workers, who had a good sense of which caregivers might need more assistance when they went home. They ultimately chose ten caregivers, with a distribution among different family relationships: brothers, sisters, spouses. “It was interesting to see everybody’s different role that they play as a caregiver,” said Ms. Bock. She found that most of them were open to receiving support.
To assess the caregiver’s needs, the program prescribes administering multiple tools: the Burden Scale for Family Caregivers (BSFC-s); the General Self-Efficacy Scale; the GAD-7, which screens for anxiety; the Patient Health Questionnaire (PHQ-9), which screens for depression; Brief Health Literacy, which addresses possible learning barriers; and a Social Determinants of Health tool (Figure 1 below), which assesses whether the caregiver is getting enough food, lives in adequate housing, or is getting their other basic needs met. Ms. Bock began by taking it slow, telling the caregivers that they could start with one tool and go from there. Most ended up completing all of them.
Figure 2. Rush University Medical Center Social Determinants of Health Screening Tool
Although it made the caregivers uncomfortable at times, Ms. Bock found the Burden Scale yielded particularly useful information. “Nobody wants to say their family member is a burden,” she noted. She emphasized that they were free to decline to answer. But a number of the participants were able to express their emotions about their caregiving role. Some wept. “I saw a lot of guilt,” said Ms. Bock. For example, a patient with Alzheimer’s had made her caregiving sister promise never to place her in a nursing facility, but she had no choice when she was no longer able to safely care for her sister at home. Ms. Bock also observed how culture and gender influence how caregivers view their role, as in the case of a woman who said that in her tradition it was the wife’s duty to care for her husband 24 hours a day.
After the initial meetings, Ms. Bock held one additional meeting with most of the caregivers. With others, she had two or three more. The lengths of the meetings varied, typically from an hour to an hour and a half, with more time needed for older caregivers on average. Ms. Bock was able to hold most of the conversations in person, which she preferred. She conducted two by telephone but felt that “you lost the personal connection.”
Through this work, Ms. Bock and her colleagues learned that the 4Ms can apply not only to the patient but also to the caregiver. Thinking about What Matters to the caregiver is important, too. And addressing a patient’s 4Ms must take the caregiver into account. Some medications, for instance, may require training of the caregiver for their administration.
When residents are almost ready to leave, the team gets together to work on discharge planning. The pilot project provided a checklist of things for a subacute rehab facility to teach the caregiver before they go home, including diabetic teaching, training with physical therapy, and wound care.
The final part of the process is to follow up with the caregivers one month, three months, and six months after the end of the intervention. So far, Ms. Bock has checked in with three of the caregivers. One was the sister who had to place her sister in memory care. “It kills her every day that she had to do that, but she goes to visit every day,” Ms. Bock said. “[Caregiving] doesn’t really end.” She has also spoken with the woman who had been caring for her husband 24/7 because she felt it was her duty. “We talked about her maybe taking a day or two to clear her mind,” said Ms. Bock. The woman found someone else to care for her husband while she goes to a place to meditate once a week.
For next steps, the team will continue following up with the first round of caregivers. They also plan to engage more caregivers, but they do not yet know how their approach will evolve. Although it would be ideal to engage every caregiver, the process is time-consuming, and doing so would require substantial staffing increases. The team is also considering offering a monthly wellness group for caregivers.
One key to the success of the pilot was support from leadership. Thomas Younghans, LCSW, MBA, LNHA, Vice President of JHNH, said, “We see now there is a need to go deeper than just discharge planning.” Family members “needed a little more attention than we realized,” he went on. “That’s something we are going to incorporate into our work moving forward.”
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