A Lifeline For Caregivers  

Jed Levine interviews Carol Levine

JED Levine (JL): Carol, what led you to the cause of caregiving?

Carol Levine (CL): The family caregiver cause chose me. After working in medical ethics at The Hastings Center and then in AIDS policy issues as Executive Director of the Citizens Commission on AIDS for New York City, I moved to Manhattan. My husband Howard and I bought a small house in Dutchess County. Coming back to New York one icy early-January morning in 1990, the car spun out and overturned. Howard was very severely brain damaged but I was uninjured. I spent the next three or four years struggling with his care — first in an acute care setting, then in rehab and then at home — and feeling inadequate at every stage. I kept asking myself, “What’s wrong with me?” before I had an “ah-ha” moment and realized that it wasn’t about me. Without realizing it, I had become a family caregiver, and the system was failing me. So, I shifted gears. I had been a grantee of the United Hospital Fund for my AIDS work so I talked to David Gould, the Fund’s Senior Vice President for Programs, about taking on a new health policy issue (and hiring me to direct it). I joined the Fund in October 1996. My commitment came out of both a sense of personal frustration and professional realization that this was an important health policy issue that was not being addressed.

JL: How have things changed since 1996?

CL: There is more understanding of family caregiving as a phenomenon, and more individual programs available —including two new federal programs. However, despite this, the healthcare system has become so complicated that it’s harder to navigate. When I show the focus group video that we did in 1998, we can see that caregivers expressed many of the same frustrations then as now, but things now move much faster and people are cared for in more settings, like short-term nursing homes for rehab. Real recognition has come on the social service side, so that there are more support groups and training and education. But on the healthcare side, relatively little has changed. Family members are still seen primarily as “visitors” in hospitals, and not as partners in care. Patients are still being discharged without adequate consultation with and training for their family caregivers.

JL: Have you looked at the prevalence of caregiving?

CL: It’s a highly variable statistic, because it depends on how you’re counting, who you’re counting, when you’re counting and what is defined as “caregiving.” Our estimate several years ago was that there are over a million family caregivers in New York City. Personally, I think there are more caregivers now, although not all are doing the intense, high-degree involvement of caring for someone with dementia or managing 24/7 care. The tasks of caregiving get lumped together and we hear, “Well, 50 percent of people don’t find it so difficult.” But these may be the 50 percent who are not doing very much. Ask the 50 percent who are on call 24 hours a day and you’ll get a different answer. As the population ages and home care services and hospital stays are cut, there will be greater need for people to take up the slack at home.

JL: We talked earlier about the fact that there are so many more caregiving alliances, books and articles. It’s part of the popular culture to think about caregiving. Yet, despite that, there seems to be very little action politically or legislatively or concrete family support. How can we get more attention to this issue and raise the profile of family caregivers?

CL: This is a really good issue and a hard one. The National Partnership for Women and Families, an advocacy group in Washington, is launching a campaign to do just that, bringing together the forces that are supportive of family caregiving to develop policies and an agenda for change. Lynn Friss Feinberg, who was at the National Family Caregiver Alliance in San Francisco, is heading this up. They have a lot of Washington clout. The problem is that caregiver, aging, and disability advocates often have very different agendas and getting them to agree on key items is not easy.

Caregivers themselves are not generally able to be consistent advocates. They can tell their stories and that’s effective. But unless the stories are connected to a policy “ask,” they don’t further the agenda. The health reform process has not helped much because it’s so focused on access to care and financing. Every time something is proposed that would be a change in service delivery or a support for family caregivers, we hear “We can’t afford that. It’s not the highest priority.”

JL: That’s disappointing.

CL: The one place where there has been some real traction is in the Veterans Administration. They have a very powerful case and the families who are taking care of these injured young men and women have been much more successful. So, maybe we can learn from them that it’s not a question of new drugs, it’s basic support that you would need for a long-term caregiving situation. It’s harder to get people excited about that.

JL: How does the element of cognitive impairment affect the caregiver?

CL: It changes the dynamic of the caregiving relationship. It’s not just the loss of memory but the change of personality. I experienced this with my husband who did not have dementia, but had significant brain damage which made him very volatile and emotional at times. At other times he was extremely lucid and witty. It varied. I never knew when I came home which person I was going to see.

The uncertainty about how to react and how to deal with other people in the family and community is difficult. They may not be as sensitive, so you close yourself in because you don’t want to risk an embarrassing situation for your family member.

The loss of memory of the things that brought you together or that defined your relationships makes caregiving very difficult for Alzheimer’s caregivers. And often there are other chronic conditions. So, you have all this to deal with at once. But there is actually more support available for people caring for someone with Alzheimer’s and organizations like the NYC chapter have made it possible to find help. Caregivers dealing with other conditions may not know where to go.

JL: We’ve worked hard to make sure that people know that support is available and that our services are free of charge to family caregivers. One of the things we frequently hear from families is “I wish I knew about you five years ago.” There are still a large number of people out there who don’t know where to start — don’t know where to go for help.

CL: In my case there was literally a car crash. In Alzheimer’s the car crash is 100 miles away, so you tend to minimize the possibility. There’s often reluctance to identify that something is happening, because the change happens slowly. I frequently hear stories in which a daughter knows that mom is declining, but when the son comes to visit, mom is suddenly fine. The son says “I don’t know what you’re talking about. She seems okay to me.”

JL: Until the son spends the weekend with mom without his sister. Then he gets it. Whether one is caring for somebody with a chronic disease or somebody who’s had an acute episode of an illness or injury, there are multiple transition points. In some cases it might be a transition from one stage to the next which requires a different level of care or a different setting. The family member might need respite. What kinds of situations and transitions are most difficult for caregivers?

CL: When there is hospitalization or an emergency room visit, because you’re dealing with two alien environments that confuse and disorient people. Going in and out of the hospital is a very difficult transition. ER and hospital staff are not trained to recognize the signs of dementia, and it’s not coded as a reason for admission. They may think the patient is just being hostile or combative. They may send the family caregiver out of the examining area, which only makes the patient more agitated.

JL: The crisis nature of transitions makes them more difficult.

CL: Transitions make it necessary for everyone to rethink what’s been going on. Is the plan, to the extent there is one, still working? If not, what does that mean? How do I have to change? And it reopens initial emotions that you felt when you first heard the diagnosis. You feel as though you’re reliving the whole thing again.

Ten years ago we said that transitions were critical, but unaddressed, points in healthcare. Now it’s the hot issue. We know that effective transitions can prevent hospital readmissions and improve care coordination, and there may be cost savings as well. We also know that ineffective transitions result in poor patient outcomes and frustration and anxiety for the family.

JL: We know that hospitalization should be avoided for people, especially for people with dementia, unless it is absolutely medically necessary. All too often, a person with dementia comes out of hospitalization in worse shape than when he or she was admitted.

CL: It’s easy to understand how that happens. Even if you’re fully competent, hospital procedures don’t always make sense. If you are not cognitively intact and there is no one to help you, to explain and comfort you, then it’s truly disorienting. Adding new medications may cause side effects and make things even worse.

When my husband was in the hospital, there was another patient in his room who probably had dementia. In the evening an orderly came and took the patient away. The patient didn’t know where he was going. Apparently, some test was ordered and the machine was available. The orderly didn’t know that the patient was confused. All he knew is that he had to bring him down to x-ray. But the patient was hysterical, “Where are you taking me? What is happening?” And there was no one to explain what was happening

JL: What’s the goal of “Next Step in Care”?

CL: “Next Step in Care” is a United Hospital Fund campaign to improve transitions in care settings — admissions and discharges in hospitals, rehab units in skilled nursing facilities and home care agencies for chronically ill, seriously ill, disabled patients and their family caregivers. We want to improve the relationships between providers and family caregivers, and transitions in care is the best place to start. We developed a series of guides for family caregivers designed to give caregivers a better way of understanding what is happening, how to plan for it and how to get their questions answered. We also have guides for providers about the key elements of transitions. The tools are on a website we created — www.nextstepincare.org — and they’re free, downloadable in English, Spanish and Chinese. We’ll soon have Russian.

We want to connect directly with family caregivers and help them use these tools. To do so, we’re working with groups like the Alzheimer’s Association, Medicare Rights Center, MS Society, SAGE, and other community organizations in New York to do trainings, so that their staff members have a better chance of engaging family caregivers when they’re not overwhelmed in the ER or hospital room. It’s a way to prepare people for what might happen and help them learn about how the system works. We’re also working with a group of Alzheimer’s experts around the country who have expressed an interest in or are working on improving hospital staff recognition of dementia. They will help us develop a provider’s guide within the next several months.

We are also working with another really important audience—health care providers. We just finished a six-month quality improvement collaborative design group in which fourteen health care providers formed six partnerships. They tried to understand what is happening in their own institutions about transitions and developed interventions, using some of our tools. Based on these experiences, we’re launching a full-scale quality improvement collaborative in April with forty to fifty NYC teams. It’s called TC-QuIC (Transitions in Care-Quality Improvement Collaborative).

JL: The fact that you have the providers on board is a big step.

CL: We’ve had them on board from the very beginning. Those in the design group have been very candid, honest, committed and hard-working. They identified some barriers, but were good about saying, “This isn’t working; we’ve got to try another way.” I think the most important thing that they’ve all learned is that the caregiver perspective is different from theirs and unless they talk to the caregivers, they’re not going to get it.

JL: That’s an important message. There are a lot of assumptions about what caregivers can and can’t do and what they know about the health care system.

CL: One of our more innovative tools is a caregiver needs assessment. Not a competency assessment, but a way for the family caregiver to say, “OK, these are the sorts of things that may be required. I can do some of them now or I might be able to do them if you train me. But there are some I’m never going to be able to do.” It’s a kind of permission-granting exercise to recognize that not everybody can do everything.

Part II of our Reflections interview with Carol Levine will be in our Summer 2010 issue.

Carol Levine, Director, Family Caregiving Project,
United Hospital Fund

— Jed Levine
Executive Vice President,
Director of Programs & Services