At the 2008 convention, I was fortunate to catch up with Dr. Ken Duckworth, NAMI's medical director, and his colleague, Stephen M. Goldfinger, MD, professor and chair, Department of Psychiatry and Behavioral Sciences, State University of New York Downstate Medical Center. Their insights into schizophrenia in young people I offer as a complement to my first blog outlining the findings of NAMI's recent survey. We chatted outdoors in the Florida sun.
CB: First, I'd like to know how you got involved in the blog for MTV's True Life: I Have Schizophrenia. All three of the people featured had different stories. Schizophrenia in each person is as unique as his or her thumbprint. Comment on this, and how MTV put human faces on the illness.
KD: I think MTV did a great job, and they picked interesting young adults living with schizophrenia and each of them has a different kind of package of what they're doing, how they're living, the supports and the symptoms they have. MTV did a good job. NAMI was a resource to MTV. Basically, I answered some questions that have come in, and it's been fun.
CB: Do you believe stigma is the culprit in not getting the treatment that works?
KD: I think it's one of the culprits. Young people tend to not like the idea of having an illness, and that's normal. Also, if you have an illness like schizophrenia, you can't see that you're ill, and that makes it harder, too. Most young people like to hang out and drink, that's how they socialize, or in some cases smoke dope and socialize. That complicates life for a person with schizophrenia. Then of course the attitudes that people have in society of people with mental illnesses are still negative. So that it's hard for a person to consider that they may have such a condition.
SG: I'd add that the larger healthcare system harbors the stigma that isn't talked about: unlike virtually every medical illness, mental illness hasn't been insured the same way, and the availability of treatment, even if it exists, is often not paid for in the frequency where you can see your doctor or get your medication covered. That makes it even harder, because if you have someone who is willing and wants to participate, a clinic will say, "We'll see you fifteen minutes a month," and what he really needs is a person to spend half an hour twice a week with him. That's just not part of the package.
CB: That's sad, so sad because given the right treatment, one can recover. Talk about the statistics on recovery from schizophrenia after a first episode.
KD: After a first episode, I think many people do pretty well for a period of time, but then many have recurrences. Yet if you look more longitudinally, which is Courtenay Harding's study, it shows about half the people do pretty well over time. How much of that is age or better services, how much of that is rehabilitation, these are really good questions. Not every first episode is a lifetime of episodes.
CB: Describe the kinds of challenges young people face living with schizophrenia.
KD: First of all, our system doesn't do well for young people. We don't have a system geared to young people wanting to get into a system. So you take a nice kid who's 22 years old and accepts he has schizophrenia [and half the people don't accept they have an illness, so you've taken half off the table], then you say, "I want to introduce you to this great program with all this interesting art stuff and work stuff." They go there and see people 50 and 45 years old, you know, who are having symptoms and struggling with whatever they're struggling with, and the person who is 20 or 25 says, "I don't know if I want to join this club." There are not services directly for young people. We're not great as a country, as a mental health culture, in helping people get back to school and work, which is of course what young people should be doing, they should be engaged in normal social roles.
SG: Young people have a difficulty with any illness, whether it's diabetes or dietary restrictions or various conditions. Part of being young is thinking, "It's going to go away, I'll live forever." It's particularly hard when the illness you have distorts your ability to think clearly, and it's even harder to hear the messages. If part of the illness is believing you can't trust anybody, then you can't trust the people who are telling you your feeling that you can't trust people is part of your illness.
CB: What are some early warnings that a parent or teacher should look for? It often strikes when one is a teen or young adult, and mirrors the moods and hormones of someone who's going through changes.
KD: That's a good question. First of all, I think there's an age range of vulnerability. I'm going to say 15 to 30 years old is the range. Maybe a little older for females, three or four years older, on average but not always. The most common symptoms you see, which are not specific symptoms but common ones, are withdrawal and isolation. Now you can't say that's because a person's depressed, or not interested in people, or has schizophrenia. The development of other symptoms, such as hearing voices and delusional beliefs or paranoia, is clearly something that needs to be evaluated. Every person who has those symptoms doesn't necessarily have schizophrenia. It could be bipolar disorder or substance abuse, taking hallucinogenic drugs, rarely it could be a medical problem that causes those things. Parents need to be alert to the possibility, because the earlier you get someone into treatment, typically the better they do. Also, if you ask families to look at their own family history, and you have a family history of major mental illness, and your child is isolating, hiding in their room, you should have a higher index of suspicion.
SG: I think one of the difficulties is a lot of these things are happening at a time when kids are behaving differently anyway, or are less in their parent's frame of vision. So what 15 to 20 year old doesn't spend less time talking to their parents and more time out, so that an awful lot of kids who are not going to develop schizophrenia are going to hang out in their rooms. And with substance abuse-there are probably five kids, I'm making up the number-who are somewhat paranoid, suspicious and more disorganized, do worse in school. If you look at the prevalence of marijuana use in 20 year olds versus schizophrenia, a large, large percentage of kids are using drugs so you don't want parents to begin by thinking, "Oh, I bet my kid has schizophrenia because he's holed up in his room" and sleeping more often and fighting with his friends, he may just be a teenager. There are some cardinal rules. If you begin to see things that are not the landmark of current diagnostic systems, but are the wisdom of the ages, pretty much if your kid thinks there are plots to get him, get him in for an evaluation. If the television is talking directly to him or he tells you people in his homeroom class can read his mind, those are very high. It's sort of the difference between feeling fullness in your chest and a lump in your breast. A lump in your breast, get yourself in for an evaluation. These are really the classic signs you can't ignore.
CB: What factors do you believe will enable a teen to succeed in life after having gotten sick?
KD: Well I think a supportive family, the absence of substance abuse, relatively preserved cognition-and this is just the luck of the draw, some people have beautiful brains, go back to school, do all those sorts of things, and others struggle more. I also think that connecting to something bigger than themselves-NAMI, a support group, volunteering-then their role is not just as a person with a mental illness, but they're engaged in some other activity which is an identity. As a volunteer, a part-time worker, those are important things to have in a person's life because being a person with schizophrenia in society is not highly valued.
SG: The only thing I would add, and this also is sometimes the luck of the draw, is getting a decent treater, whether that is a really good doctor, or if you have a not so great doctor, a social worker who's really connecting to you or living in a place that has a good case management group, or drop-in center or clubhouse, having some part of the caretaking system that is of high quality or that you respond to and feel cares about you.
CB: As someone who blogs and writes about schizophrenia, I'm sometimes at a loss when I hear about these stories-unfortunately, 50 percent are in this realm-how would you respond to a mother or father whose son or daughter has negative symptoms or deficit syndrome, lacks motivation or the desire to get off the couch. What hope can you give?
KD: That's one of the greatest challenges we have. It's pretty clear the medicines don't do much for negative symptoms or deficit syndrome, and they don't do much for cognition, so these are very substantial problems. I'd encourage the parents to be very patient with themselves, non-judgmental of themselves, and to figure out if the person has a depressive syndrome that's been untreated, because depression and negative symptoms look alike, so I might recommend a trial of an anti-depressant. And I would also try to find anything a person is interested in, no matter how unusual or quirky-and I would go with that. I'd probably ask them to get an evaluation from a different doctor to re-look at everything, get an independent consult. Mostly to be forgiving with themselves, because the field has not developed a way out of this problem in an active way.
SG: The other piece of it is, and I think about it a lot, is that 25 years ago, HIV infection was 99 percent fatal and now the problems we face as treaters are all the people we've been dealing with for 20 years. There is no area of medicine that is moving ahead at the speed of the neurosciences. And what would give them hope? I would not be at all surprised if 10 years from now we have a remarkably different spectrum of treatments. The disease hasn't changed over the years, but we have gotten better and better at figuring out how to make the lives of people living with this illness better. There are several clinical trials even just at my medical school specifically on cognitive enhancers. That doesn't mean, you know, next year you're going to be able to go to your doc and have them write a prescription for it, but it does mean in three years from now you'll be able to do it because treatments are getting better.
CB: Any final words of encouragement?
KD: Don't ever give up on yourself, and don't give up on other people. Stay with it.
Published On: June 19, 2008