In June 2012, Gary Epstein-Lubow stepped out of a national conference on the topic of patients with Alzheimer’s disease to participate in a smaller, more personal phone meeting on a similar subject: the hospitalization of his mother-in-law, who had recently been diagnosed with dementia.
Epstein-Lubow, a geriatric psychiatrist at Butler Hospital in Providence, R.I., and an assistant professor at Brown University’s Alpert Medical School and School of Public Health, had spent the day hearing about numerous models of care for patients with dementia that, if widely distributed, could change the way families cope with the disease. Now, he faced a grim reality: of the resources developed to help families, none were accessible to his own family members in New Jersey and Rhode Island.
“On a personal level, I was worried,” Epstein-Lubow writes in a stark, personal essay that will be published in April’s edition of Health Affairs. “I was worried about (my father-in-law), my wife, her siblings, and myself. We would be (my mother-in-law)’s caregivers for the rest of her life. And I understood the devastating toll dementia could take on an entire family.”
The essay, “A Family Disease,” follows the difficulty that Epstein-Lubow and his family had in finding the treatment that his mother-in-law required and the support that they — her primary caregivers — so badly needed. The author also describes his own grandparents’ struggles with the same disease 25 years prior, and notes that as access to family-based solutions remains limited, “the situation today is not much different.”
Though family caregiver support has been lacking in the past, recent years have seen considerable research on the subject, along with legislation like the National Alzheimer’s Project Act (NAPA), enacted to help families struggling with dementia.
Epstein-Lubow, for his part, is hopeful that access and options will improve. “I’m very optimistic,” he told PBS NewsHour. “NAPA is helping to frame a conversation at a federal level, and it’s helping states to also do similar work at the local levels.”
The author recently sat down for a discussion with the NewsHour.
NEWSHOUR: As a geriatric psychiatrist, how did your understanding of dementia family care change after your mother-in-law was diagnosed?
GARY EPSTEIN-LUBOW: There were three ways. Living it from the inside has a whole bunch of feelings associated with it … I love my mother-in-law and my father-in-law, and it’s just terribly sad and difficult and uncomfortable to watch them suffering. It really affects all of us. It affects my son, my wife. Living that was new for me, and it really increased my empathy for what (other) family members are wrestling with when I’m working with their loved ones in the hospital.
I thought that I knew the right things to do. I could recommend, ‘This is what we need to do. We need to get care management in place. There’s different types of clinicians that my mother-in-law needs to see.’ (But) actually making that happen… wasn’t that simple. It’s not like writing a prescription. … I’ve always understood that it’s stressful for family caregivers to get these things in place, but actually seeing it within our family and how hard it is for the family members to get their loved ones the services—that was an education.
When we went actually looking for services — we wanted to find a program that would help my father-in-law and my mother-in-law at the same time — they just weren’t available. I’ve known about these types of programs in New York City and other places, but even though we’re in a busy, suburban New Jersey area, it was difficult to get services that were matched for them, and then we had to pay for them. That was an education.
NEWSHOUR: How has this experience changed the way you do your job?
GARY EPSTEIN-LUBOW: I have always taken a good amount of time with families. I can’t say that it really changed the way that I approach patients and caregivers that much because I was already oriented that way, but I think I listen just a little bit more with the family members when I see that they’re very distressed, and I’ll put extra effort in… to make sure that the family caregivers have all the resources that they need.
NEWSHOUR: You write that even after decades, “access to family-based solutions” still remains limited. What kind of solutions would you like to see, and why are they so limited?
GARY EPSTEIN-LUBOW: I’d like to see family caregiver assessment happening at the same time that the patient care happens. At the time of an initial diagnosis, when someone first learns that they have dementia, that’s a great opportunity for the team who’s working with the patient to also help the family caregiver with education and with thinking ahead about resources that they might want to plan, be they financial or supportive.
Then there are other times as dementia progresses when it’s really important to include the family caregiver: certainly when there are emergencies at a hospital, or when they’re having a dangerous situation at home and there are questions about whether they can stay at home or would need to go to a facility. … And also at the end of life.
There are other reports in the Health Affairs issue about work that’s happened in Indianapolis with dementia care management and Mary Mittelman’s program for longitudinal caregiver support. If those programs were systematically tied to all of the dementia care in a particular area—Indianapolis is doing it somewhat, and if you happen to live in New York City you can connect to Mary Mittelman’s program—those are the types of resources that I would like to see more universally available.
I was invited to a meeting in Washington, D.C., in the summer of 2012 called “Translating Innovation to Impact” … and we were discussing exactly this issue: ‘How do we—with all this evidence about these programs that work for family caregivers and help patients stay at home longer—make an impact? How do we get them disseminated so that they’re more easily available?’ That same day that I was at that meeting, I had to step out during lunch and was on a phone conference call with my family because my mother-in-law was in the hospital. I talk about that in the essay: I was actually standing there in D.C. feeling how frustrating it was that there were all these resources, but we can’t get them to the families in need.
NEWSHOUR: Can you speak to why it’s so difficult to get these resources to the families?
GARY EPSTEIN-LUBOW: That Innovation to Impact meeting, that was what the whole day was about: ‘What do we need to be doing next, and why is it so difficult?’ I think a lot of it is that we don’t have the fiscal or financial models yet. It takes a lot of time to just work with a dementia patient in the outpatient setting, and a lot of that time goes into educating the family caregiver on what they need to do specifically for the patient. To add in the time that it takes to assess the caregiver and how she’s doing, that’s additional work.
The patient is the person with dementia, and when an outpatient program starts to work with the family, then you have to think ‘Is the family caregiver going to get services from us also, or do they get services someplace else?’ So those can be complicated models to set up. … Examples exist, but they haven’t made their way into routine payment models. We’re demonstrating that they’re cost-saving in the long run, but how to pay for them in the short run is what’s complicated.
In the Innovation to Impact meeting, there were some other suggestions about what’s critical to really move this work forward. In addition to finances, (we need) more evidence about the cost-effectiveness of it that will convince payers. (We also need) some common language so that when we talk about caregiver support services, it means the same thing to a neurologist as to a social worker as to a psychiatrist … We (need to) have better definitions for all the aspects of delivering helpful ‘caregiver support.’
NEWSHOUR: Are you optimistic that with the help of these conversations and recent Alzheimer’s legislation, care and service will be improved?
GARY EPSTEIN-LUBOW: Yes, I’m very optimistic. NAPA (National Alzheimer’s Project Act) is helping to frame a conversation at a federal level, and it’s helping states to also do similar work at the local levels. One example: in Rhode Island, we have recently put together a state plan and going to the national plan as a model is very helpful to us.
That said, the resources that need to go to NIH (National Institutes of Health) to demonstrate the cost-effectiveness of this work … are still limited, and the agenda — this is not exactly my area, but the scientific agenda to produce medications that are disease-modifying and that slow the course of the illness, will require a very substantive investment of scientific resources to the NIH. It’s not clear to me if the amount of funds that are allocated through NAPA to the NIH to complete that scientific mission are adequate.
NEWSHOUR: As someone who has personally experienced the effect that dementia can have on a family, and as someone in the psychiatric field, what advice would you offer to families suffering from this disease?
GARY EPSTEIN-LUBOW: Contact your local Alzheimer’s association or groups that are like that in your area that are easy for you to get to, convenient, so it’s not stressful to reach out to that help.
If there’s not an agency nearby, use the phone help lines, which are available everywhere.
I would talk with people who have been through the situation before. If you can find a support group, that could be a great way to get information and be able to talk openly about how you’re coping.
Practically, you would want to make sure that there’s an accurate diagnosis. However you would get that diagnosis — it’s typically from a physician — and that person or another person then needs to become a primary contact that the family can go to over time. Establishing that consistency of a clinician or a group of clinicians that can help with the dementia care over months and years can be very reassuring to the family.