The Beatles' song wonders whether a sweetheart "will still need and feed" you when you're sixty-four. What about those of us getting older who live with schizophrenia? Will society feed us if we can't do it ourselves? When we're no longer needed, will we be cast aside?
In "Aging with a Life-Long Serious Mental Illness," a session at the NAMI 2007 conference, those kinds of intimate questions weren't asked. Next year in Orlando, I'd like to see a workshop where people in their 50s and 60s or older, living with schizophrenia, talk from a first-hand perspective about recovery and lifestyle changes.
At this point, I want to tell you emphatically that the workshop was spot-on in its analysis of schizophrenia and treatment outcomes for those of us with a diagnosis. The speakers detailed useful and beneficial information in a clear, friendly way. It was easy to understand. So perhaps I read into things when I saw the words "baby boomers " in the program guide and thought it was going to be about lifestyle.
In this blog entry, I'll give the statistics and information presented, and ask the hard questions that nobody has yet asked. I'll end with a pointed question to the establishment, because I won't let psychiatrists and other professionals off the hook. Write in and let me know if you think I'm on-target.
Laurie A. Lindemar, Ph.D., Associate Clinical Professor of Psychiatry at the University of California, San Diego, presented "Aging and Life-Long Serious Mental Illness: an Update" at the Saturday afternoon session. Under the "Prevalence of Psychosis," two percent (1 million) over the age of 54 suffer from a serious and persistent mental illness, not dementia. The majority of these individuals have the diagnosis of schizophrenia. Over the next 30 years the proportion will double.
That's enough to give anyone gray hairs!
However, the research is hopeful. The course of EOS (early onset schizophrenia) shows that some improve, some decline, and most are stable. The University of California, San Diego had specific criteria for sustained remission:
- Met DSM-IV criteria for schizophrenia in past, but not currently.
- No hospitalization for last 5 years.
- Med-free or on lose dose of an antipsychotic medication.
- Level of daily functioning comparable to that in older normal subjects, per caregivers.
(Auslander & Jeste, Am J Psychiatry, 2004)
The "study of sustained remission" included 145 middle-aged and older patients with schizophrenia living independently. Twelve percent had been labeled "clinically remitted," and 8 percent met research criteria for sustained remission.
Delving into the literature, we find interesting correlations. Predictors of sustained remission include social support, greater cognitive/personality reserve, and early initiation of treatment, NOT age or duration of illness.
As regards to "EOS in Late Life: Some Deteriorate," the harsh truth is the statistics come from earlier studies of institutionalized persons with schizophrenia. Many chronically institutionalized persons show functional decline. (Harvey, et al, 2003)
Under "EOS in Late Life: Most are Stable," it shows these patients have a relatively stable and non-deteriorating course; negative symptoms persist while positive symptoms show a modest improvement; and the rate of age-related cognitive decline is similar in patients and normal subjects.
Here's where I ask the hard questions: could repeatedly going into the hospital for multiple episodes actually be dangerous to our health? If there's no alternative and treatment on a ward is deemed absolutely necessary, so be it. Yet the idea of living one's whole life on a back ward makes me shudder. Today most people can affect drug changes with their psychiatrists on the outside. The hospital isn't a place anyone should call home.
My other beef is that to be given the "sustained remission" bill of health, a patient has to be "med-free or on low dose of an antipsychotic medication." To hold us to a standard of recovery based on whether we take drugs or not doesn't help us. In my experience, it's rare that someone not on meds is able to function as well as those of us who take the pills. One person I know has been off them for three years and acts odd and hears voices, yet hasn't been hospitalized and lives independently.
Does he get the recovered label? I would like an admission from the psychiatric community that one can be fully recovered even if he or she takes the meds. To make us strive for the nearly impossible isn't fair. If the establishment doesn't acknowledge our successes, how are we supposed to get energized about our treatment outcomes?
For 15 years, I was on only 5 mgs. of a drug when the maintenance dose was usually 10 to 20 mgs. The drug stopped working, and I needed to switch. It's dangerous to use a low-dose as the holy grail of recovery if a patient needs a higher amount. Undermedicating can be just as risky as overmedicating.
The other presenter, Daniel D. Sewell, M.D., director, Senior Behavioral Health, Center of Excellence for Stress & Mental Health, VA San Diego Healthcare System, summed up the consequences of non-treatment: "Most people with schizophrenia need continued pharmacotherapy in order to avoid relapse."
He presented a "Shared Decision-Making" model based on these points:
- Discussing with patients, family members, caregivers (as appropriate) benefits and risks of different treatment options.
- Giving an informed opinion with rationale.
- Regularly reassessing the treatment.
- The final decision made by the "consumer."
- Issues of proxy, consent, assent, advance directive.
- "Enhancing" the informed consent process.
- Documenting the discussion.
In closing, I urge everyone diagnosed with schizophrenia to be candid about your symptoms and what's going on in your life, and to speak up and be a self-advocate to get the treatment you deserve. To subtly ease into this new outspoken role, "act as if" you're confident. Picture yourself at the psychiatrist's office talking calmly about what your needs are. Write down your questions and bring them on your next visit. Role-play the session with someone you trust.
I'd love to hear from those of you in your 50s and 60s or older. How do you deal with residual symptoms? Do you have lifestyle challenges not being addressed by the medical community? What about relationship issues? Travel? The loss of parents? Do write in and let me know what you think.
Next up, I'll return to my daily life, and focus on what's going on. I've written some blog entries that I hope are insightful and inspiring. See you soon!
Published On: July 10, 2007