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Theme* Quotations 1 “There's unfortunately not a lot of resources where we are for helping folks, or maybe I'm just not aware that they exist.” 1 “Well, it's mostly availability … and that these types of services aren't readily known, and those that are, are overwhelmed with requests. So, the access is more of an availability issue.” 1 “Neither the doctor nor the family has been trained to do [non–drug approaches] right.” 1 “If I could sign up every family that I diagnose as a patient or every spouse or daughter, or caregiver to a dementia navigation for the caregiver like a course, I think that would be so helpful because half of what we take care of is caregiver support issues. They either don't know what to expect or they don't know if this is a normal part of the process. Sometimes just assisting them in navigation of how to cope and handle situations that come up but also what's going to be problems in the future, I think that would—that's a resource that I wish I had—a caregiver navigation course. We have a diabetes education course, something like that I think that would be really helpful.” 1 “Counseling for caregivers, yes. And then, of course, helping the caregivers navigate situations in which their behavior problems might escalate—try to defuse those.” 1,2 “Early on, and if they've got other family members at home, it works out OK—like, reassurance, but if they're alone or if there's another elderly spouse in the house, or if they start wandering, or if they see things that really scare them, then the nonpharmacologic doesn't work very well.” 1,2 “To be honest, I think by the time they come to us and are complaining, the advocate is complaining for the patient, I think they've tried the reassurance and the nonpharmacologic things, and it's up to us to kind of step in pharmacologically and help.” 1,2 “Writing a prescription and accepting a prescription is often the easiest intervention for both the doctor and the patient or family. The other interventions require effort on both ends and oftentimes expense and inconvenience.” 1,2 “There are short-term cheap ways to address these situations pharmacologically. The long-term, more definitive approach is often more costly, and you run into barriers, too, with family members having to work outside the home or having difficulty taking time off to manage that, as well.” 2 “Well, that's almost like saying, ‘Am I relying on somebody's insulin to treat their diabetes?’ Well, of course I am, ‘cause it works… . We're getting a phone call that they're screaming or they're complaining the police are out to get them, and they're showing more of the psychotic-type behavior changes, it's nice to have medicines that control that, because I feel that I'm actually doing the patient a service. And it's not just that I'm treating that because they bother the staff, but rather that it's bothersome to the patient… . I feel like I'm doing a good job of addressing the patients.” 2 “Is it better to medicate somebody or is it better to have their caregiver give up, where they have to be moved to an institutionalized setting? … For the majority of patients that's our goal.” 2 Interviewer: Do you see the severe side effects that are described in the black box warnings in your patients? “No. Have you? [laughs]” 2 Interviewer: OK. What kind of significant side effects do you look for in meds in general? “Well, obviously with the SSRIs, it's serotonin syndrome. And I've unfortunately had that a couple of times. The benzos, obviously you worry about oversedation, falls, things of that nature. The atypicals—you know, there's some issue of increased mortality. Cardiovascular, which I have not seen. I haven't seen any of the worsening of depression, suicidal-type behavior associated with any of those so far. But I have a fairly healthy fear of them.” 3 “I see myself using less antipsychotics in this population now than I did 10 years ago.” Interviewer: What diagnosis do you use for prescribing the meds for behavioral issues? “Well, you know, there's only three diagnoses that will cover those things [chuckles], so there has to be some element of psychosis if you're getting Seroquel. Now, if it's Remeron it's gonna be probably major depression. If it's Depakote, it may be maybe some agitated features with some depression … you can't use Alzheimer's dementia to get Seroquel covered in the nursing home.” 3 “[In nursing homes] we can use benzos, but we stay away—there's virtually nobody on Seroquel or Risperidone or any of that stuff… . There's more trazodone use, and occasionally the morphine.” 3 “The state regulators, they're not gonna mess with a psychiatrist like they would a generalist … and obviously the patient's doing better and that's documented, and they're being looked at by psychiatry and looked at by me, so a regulator in their right mind is not going to want to change that.” 3 “[Regarding antipsychotics] I have not seen anything that has been truly alarming. I have seen side effects that have resulted in discontinuation, but nothing that—nothing is coming to mind as far as significant morbidity.” 3 “[Benzodiazepines] definitely share the same types of safety concerns that I have with the antipsychotics.” 3 “The cautions have become stronger over the years—the conversations that I have when a family member approaches me with the typical exasperated, ‘You gotta do something—you have to give my parent something to calm them down,’ I do have, hopefully at a level that they can understand, a discussion with them regarding the fact that they may see that in the short term, their parent is more manageable with medication onboard, but these medications have the risk of serious side effects, and assuming that I'm speaking to them as a power of attorney, they need to make a risk/benefit decision as far as whether this is an intervention they want to try. That's a conversation I probably was not having 10 years ago.” 4 “If you go back and you go through the American Academy of Family Practice and look at dementia … they're basically telling you to stay away from the medicines that almost every person ends up on anyway … because they never say what to do when [a non–drug approach] doesn't work … try harder or something, and they just need to say, ‘This is the fallback if this doesn't work.’ They have an algorithm for everything else; it has little arrows going down saying what to do. For this one, they don't.” 4 “It would be nice instead of having all of our guidelines say ‘don't do, don’t do, don't do,' it'd be nice to find out what we can do.” 4 “I would love to not give these people these medications if somebody would give me a reasonable alternative, but I have yet to see anything come out in the literature that will provide the sort of symptom relief that you're looking for, that will allow these people some sort of functional ability … because if I don't give it to them, they have no quality of life and they are basically tormented by their illness … .” 4 “I'm told that, at least in journal articles that I read, that I'm a bad doctor because we should be using all these behavioral methods and so forth, but the bottom line is those other things don't work. I've talked to doctors who've gotten special training in geriatric medicine and they will say the same thing, but ultimately all their patients end up on the same things.” ↵* Theme 1: nonpharmacologic behavioral and psychological symptoms of dementia (BPSD) therapies have substantial barriers; theme 2: medications for BPSD are “easy,” efficacious, usually safe, and address patient needs; theme 3: consequences of current policies; theme 4: primary care physicians need supportive and evidenced guidelines.
