Early Psychosis: Learning to Recognize Psychosis Early On and What to Do About It

For schizophrenia, symptoms like psychosis can often start in the mid-to-late teen years. Sometimes no one realizes that the person is having psychosis, which means they don’t get treatment as quickly.

For several years now, one focus in schizophrenia research and treatment has been identifying and treating people with psychosis (and possibly schizophrenia) early on in the course of their illness. It is thought that, in general, the earlier a person gets treatment, the better they will do overall. (JAMA. 2013;310(7):689-690. doi:10.1001/jama.2013.8804)

There are a lot of signs that sometimes point to someone starting to have psychosis, including sudden drop in school or work performance, trouble concentrating, not trusting others all of a sudden, not taking care of appearance or hygiene like they used to, having strong, inappropriate emotions or no emotions at all, and spending way more time alone than is typical for the person. However, these signs can also just be signs of typical teen/young adult behavior, or signs of other issues (other mental illness, drug and alcohol abuse), so it’s critical to get the opinion of a professional, preferably a mental health professional with some experience with people with psychosis.

Recently, the National Alliance on Mental Illness (NAMI), a nationwide non-profit organization, posted a thorough article on how to identify psychosis early on, what it is, what you can do, helping people with psychosis get the help they need, and working with school staff to work with the person with early psychosis. They include how to recognize early signs of psychosis, different treatments, therapies, resources, and support programs for people with the psychosis and for their families.

Sometimes, a person who’s beginning to have psychosis may not understand that they have psychosis, or may not want to get help. Here is a helpful tip sheet posted in the NAMI article above that addresses ways to engage a person in treatment and things to avoid.

For information about your local NAMI chapter, look on their national webpage for a search window based on what state you live in (halfway down the page, on the left), or call their national hotline at 800-950-6264.

Here in Minnesota, there is a Youth Psychosis program at the University of Minnesota, which provides consultation with psychiatrists about medications, therapy, school consultations, and education with the family of the person with psychosis. For questions or to set up an appointment, call 612.273.8710.

The group I run, called Living with Schizophrenia, can accept people new to the disorder as well, but the focus is not specifically on early psychosis, but rather on skills and support for people at any stage of the illness. However, I do have a packet of information about schizophrenia and related illnesses as well as about how to access available resources in the Twin Cities. Contact me for a copy of the packet if you’d like one.

Resources 2

Several weeks ago I posted about urgent mental health resources for people with schizophrenia and related disorders. This post is a follow-up, a post about less urgent, more long-term resources. Please note some of these resources may not be available for those who live outside of Minnesota. Also, while I have tried to make sure all this information is updated and accurate, sometimes things change without my knowledge, please let me know if there are any errors in this list.

Getting yourself or your loved one the right treatment as soon as possible will minimize the illness’s impact. However, because of the nature of the illness, some people with schizophrenia don’t believe they have a problem and resist the treatment they need. The book “I Am Not Sick, I Don’t Need Help” by Xavier Amador gives some very useful advice on this subject.

In this second list is information about therapists, CADI waivers, home health nurses, ARMHS workers, and Community Support Programs. Look in the coming weeks for part 3, which addresses housing, foster care providers, PCAs, and job training.

Therapists:

Many people with a schizophrenia disorder can benefit from some sort of talk therapy. They often do best in a large clinic with clinicians who are experienced with their specific issues; I specialize in working with people with psychotic disorders and do individual, family, and group therapy at Psych Recovery in St. Paul. Here is a list of clinics that commonly provide services to people with schizophrenia:

CADI waivers:

Community Alternatives for Disabled Individuals (CADI) Waivers are a separate program that offers funding for home and community-based services with the goal of keeping people with serious mental illness out of the hospital or other institutions. More information can be found here and here. If possible, you want to get a case manager/social worker to help you with this application, but if none is available, the client can fill out the application here. For a list of county offices that may be able to assist you, call 1‑866‑333‑2466.

Home health nurses:

Home health care nurses are nurses who come to the client’s home and set up their medications in a weekly pill container. The nurse can also assess the client’s physical and mental health. These home health nurses can be requested by physicians (in order to get covered by insurance) or a case manager. Another way to get a home health nurse is to request a waivered program assessment from the county. There are several programs that the consumer may be able to access and the county is required to complete an assessment if one is requested. The waiver programs offer financial programs for in-home services to help individuals with mental or physical disabilities continue to live in their homes. To request a waiver program, call the county at the number listed in the case manager section. Finally, a person can call a home health nursing agency (e.g. Abbey Health Care, Aspen Medical, Dakota Valley) themselves and ask for an assessment as well.

Adult Rehabilitative Mental Health Services (ARMHS) workers:

If a client has Medical Assistance, they may qualify for an ARMHS worker. A case manager can make the referral, or the client can call to an agency that offers ARMHS services. The referring agency will do an intake and assess the need and do a treatment plan. Usually issues that allow an ARMHS worker to assist is with paperwork, budgeting, maintaining an apartment, and other independent living skills. For a list of ARMHS providers by county, see here.

Community Support Programs

These are programs offering various resources like case management, housing assistance, and drop-in centers. Drop-in centers-these are like clubs for people with mental illnesses, they are places where people can go where people won’t judge them, there are many recreational activities and social opportunities available through these centers. The following is a list of drop-in centers, listed by county.

Anoka County

  • Bridgeview CSP at 7920 University Ave. NE Fridley, MN 55432 call 763-783-7440 (free transportation available)

Carver County

Dakota County

  • Guild CSP at 130 South Wabasha Street, Suite 90,St. Paul, MN 55107, call 651- 291-0067
  • Horizons CSP at 3450 O’Leary Lane, Eagan, 55123, call 651-395-5783

Ramsey County

  • Resource CSP at 651 University Ave. W., St. Paul, 55104, call 612-752-8670

Hennepin County

  • Charaka CSP at 7888 12th Avenue South, Bloomington, 55425, call 612-752-8350
  • Lighthouse CSP at 1825 Chicago Ave. S, Minneapolis, 55404, call 612-752-8200
  • Northside CSP at 1309 Girard Ave. N, Minneapolis, 55411, call 612-521-2116
  • Plymouth Drop-In at 1900 Nicollet Ave., Minneapolis, MN 55403 call 612-977-1282
  • Northwest CSP at 7000 57th Avenue North, Suite 100, in Crystal, call 612-752-8300
  • Seward CSP at 2105 Minnehaha Ave., Minneapolis, 55404, call 612-333-0331
  • Vail Place-Hopkins at 809 Mainstreet, Hopkins, 55343, call 952-938-9622
  • Vail Place-Minneapolis at 1412 W. 36th St., Minneapolis, 55408, call 612-824-8061

Scott County

  • Anchor Center at 742 Canterbury Road S., Shakopee, 55430, call Cindy at 952-496-8541

Resources: How to Get What You Need for Recovery

There are a variety of resources available to people with a schizophrenia / schizoaffective disorder, but I have found that people are often not given much guidance as to what these resources are or how to access them. Often people tell me that they don’t even know what they or their family member will need. So I have compiled a brief summary of some of the more important resources for recovery. Please note some of these resources may not be available for those who live outside of Minnesota. Also, while I have tried to make sure all this information is updated and accurate, sometimes things change without my knowledge, please let me know if there are any errors in this list.

Getting yourself or your loved one the right treatment as soon as possible will minimize the illness’s impact. However, because of the nature of the illness, some people with schizophrenia don’t believe they have a problem and resist the treatment they need. The book “I Am Not Sick, I Don’t Need Help” by Xavier Amador gives some very useful advice on this subject.

Due to the list being so long, I have separated it into two parts. This first part lists more urgent needs, the second part will address resources a person will benefit from over the long term.

In this first list is information about psychiatrists, NAMI, Social Security Disability, medical insurance, mental health case managers, and crisis resources.

Psychiatrists: The vast majority of people with a schizophrenia disorder do much better on antipsychotic medications. Your family member will need to get connected with a psychiatrist for these medications. Keep in mind that there is a shortage of psychiatrists, so there may be long waits to get in to see one. If your family member is in crisis, take them to the ER. Sometimes family practice doctors will be willing to prescribe antipsychotic medications for a limited time while a client waits to get in to see a psychiatrist. Your best bet for finding a psychiatrist is through your family member’s insurance–call or look up online and ask for a referral.

NAMI: The National Alliance on Mental Illness (NAMI) of Minnesota is a non-profit organization dedicated to improving the lives of children and adults with mental illnesses and their families. NAMI Minnesota offers education, support and advocacy. NAMI Minnesota offers more than 500 free classes and presentations and over 60 support groups each year, and was recently recognized with prestigious national and state awards for its advocacy successes. I have heard many people say that the support groups and education classes offered have been of enormous help to them. There is a specific program called Transitions for education and support for young adults and their families, as well as a youth-specific website. Contact Andrea Lee for the youth program at 651.645.2948 ext. 106, e-mail alee@namimn.org, or for general classes or support groups, go to namihelps.org or call 651-645-2948.

I highly recommend the NAMI resources, and encourage all of my clients and their families to get in touch with them.

Social Security Disability benefits: Many people with a schizophrenia disorder will not be able to work full time. If this is the case for you or your family member, it’s probably a good idea to apply for disability benefits to get some financial help. Keep in mind that these benefits can be cancelled at any time if your ability to work improves enough that you no longer need them. There are two general types of disability benefits, SSI and SSDI. If you have worked a certain number of hours, you’ll qualify for SSDI, if not, you’ll qualify for SSI. But you don’t have to worry about which one you qualify for, they can figure that out for you. To apply for disability benefits, go to the government online application or call 1-800-772-1213. (A smaller number of people may qualify for a program called RSDI, see here for a further explanation.)

Sometimes people’s first application will be denied and they need some extra legal help in getting the right information in their application. If you are denied, call a law firm that deals with these issues. There are some that do pro bono or sliding-scale fees, such as Southern Minnesota Regional Legal Services (651-222-4731).

Medical Insurance–Medicare, MinnesotaCare, and Medical Assistance (MA): It is vital that people with a schizophrenia disorder have some sort of health insurance. If they are not working due to their illness and aren’t on a family member’s plan, they are likely eligible for Medicare, MInnesotaCare, and/or Medical Assistance, which is Minnesota’s Medicaid program. Apply for Medicare through their online application here, MinnesotaCare here, and apply for MA through their online application here.

Mental health case managers: Case managers are trained people, usually social workers, who are very familiar with the “system,” in that they know the ins and outs of how to get clients certain services and benefits. To apply depends on the county that the client lives in:

  • Anoka County: call 763-422-7326 or 763-422-3283
  • Carver County: call 952 442-4437
  • Dakota County: call 651-554-6000 or 651-554-6424
  • Hennepin County: Call Front Door Access at 612-348-4111
  • Isanti County: a provider (therapist, psychiatrist, etc) can call 763-689-1711 for a referral
  • Ramsey County: call 651-266-7890
  • Scott County: call 952-445-7751
  • Washington County: call 651-430-6484.

Crisis resources:

Sometimes a person with a schizophrenia disorder will experience symptoms getting out of control, and often they are not able to get in to see a psychiatrist the same day. If a person seems overwhelmed by symptoms, seems at a point that they might harm themselves (or others), or if they are not able to care for themselves due to symptoms, they are in crisis. There are several options if someone is in crisis. They can always call 911 or go the Emergency Room of their preferred hospital, they will be assessed and possibly admitted to the psychiatric unit of that hospital.

If it doesn’t seem like the person needs hospitalization, you could call a crisis service. One such services is Crisis Connection: 612-379-6363 or 1-866-379-6363, from any location. Alternatively, you could use this online crisis resource locator.

The following is a list of crisis numbers for counties in and around the Twin Cities:

  • Anoka County-Mental Health Crisis Outreach-763-755-3801
  • Carver County- Mental Health Crisis Program, available 24-7, provides both phone assessments and on-site crisis management. 952-442-7601
  • Chisago County – Crisis Line 1-800-523-3333
  • Dakota County Crisis Response Unit at 952-891-7171, which provides 24-hour telephone or on-site response
  • Hennepin County Community Outreach for Psychiatric Emergencies (C.O.P.E) To reach our mobile team, call 612-596-1223, available 24-7.
  • Isanti County- Crisis Line 1-800-523-3333
  • Mille Lacs County – Crisis Line 1-800-523-3333
  • Ramsey County, 24/7 Crisis Hotline 651-266-7900. Also, with more limited hours, Urgent Care for Adult Mental Health. Walk-in crisis services at 402 East University Avenue, St Paul, MN 55130, M-F 8am-7pm, Sat 11am-3pm.
  • Scott County– Mental Health Crisis Program, available 24-7, provides both phone assessments and on-site crisis management. 952-442-7601
  • Washington County-crisis outreach at 651-777-5222

If you live outside the Twin Cities area, here is a list of crisis numbers, listed by the county that the person in crisis lives in.

Also see Resources Part 2, which covers information on therapists, home health nurses, CADI waivers, ARMHS workers, housing, vocational training, and community support programs.

New results for treatment of negative symptoms in schizophrenia

Boy sitting among daisies

Most people associate the word “schizophrenia” with its positive symptoms–hearing voices, seeing visions, having paranoid thoughts. However, negative symptoms can be as difficult as positive symptoms. Negative symptoms refer to symptoms where something is less than expected, such as one’s face showing less emotions than average, one having less ability to get things started, and having less interest in activities than one used to.

For years, there have been medications that target positive symptoms, but there aren’t many medications that target negative symptoms, and they are not always effective. However, the research continues, and now there’s more hope on the horizon for treatment of negative symptoms. An article cited on ScienceDaily.com from the European College of Neuropsychopharma-cology sheds more light on these medications and what they can do.

Social Skills Recovery in Schizophrenia

making connections

Often, when a person’s schizophrenia symptoms begin to emerge, one of the signs is social withdrawal and isolation. The person finds conversations more difficult to follow and his or her thinking can be constantly interrupted by symptoms such as paranoia and voices. However, there are several ways a person with schizophrenia can work on their social skills and improve their social life. Individual and group therapy, which can provide Cognitive Behavioral Therapy for Psychosis and social skills training and practice, can be of great help (see previous blog posts about Meeting New People and Small Talk).

In addition, club houses and Cognitive Enhancement Therapy are two other resources that, where available, can be a powerful tool to improve the quality of one’s social life.

Club houses (also called Community Support Program) are clubs for people with mental illness, where there are activities and opportunities to meet others. They offer a straightforward approach of offering a place and the structure to meet new people and do fun things. They’ve been around for decades, and improved the lives of many people.

Cognitive Enhancement Therapy (CET), on the other hand, is one of the newer treatments for people with schizophrenia disorders. Still in the research phases, it is available in many larger universities’ research programs, and has shown great promise with social skills improvement. Here is the link to one man’s experience with CET.

What Makes Schizophrenia Symptoms Worse?

What makes symptoms worse?

This is a question I get a lot. Some people with schizophrenia disorders feel like their symptoms are random and unpredictable. It’s true that we can’t pinpoint exactly which symptoms are going to be up or down on a specific day, there are things that will usually make them worse. For ways to manage symptoms, see previous blogs. However, if you want to know what NOT to do, keep reading….

Using Alcohol and/or drugs. Over 50% of people with a serious mental illness abuse alcohol or drugs at some point in their lives, and this can really mess with your symptoms. It makes the effectiveness of your meds lower, it makes your emotions fuzzy and numb, and it makes symptoms worse overall. Plus people who are under the influence tend to make poor decisions and be more vulnerable to people taking advantage of them. Alcohol and drugs can make you feel numbed out for a while, but that will be canceled out by the negatives of using.

Ignoring stress. People with schizophrenia disorders are often affected by stress more than people without those disorders. You need to learn about stress management, and use those skills whenever stress comes up. Try to avoid situations that you know will bring you unhealthy stress, such as usign drugs or spending time with unsafe people.

Tinkering with your meds without talking with your doctor. As you know, not every medication affects everyone in the same way. However, if yours aren’t working right, talk with your doctor to come up with a better plan. One of the most common reasons for mental health relapses in people with schizophrenia is stopping meds. Your doctor went to many years of school to learn how to figure out which meds might be a good fit, put your trust in him or her and make sure your doctor knows if you’ve changed your meds.

Not taking care of your physical health. Everyone’s mental health is better when they eat right, get regular exercise, get enough sleep, etc. Take care of your body so that your mind is in good shape.

Spending too much time alone in your home. When you’re by yourself too much, symptoms can start getting worse without you even realize it. Make sure you get out and about and see people 5-7 times a week. Also, friends can be really helpful for support and keeping symptoms away, even if you aren’t talking about your symptoms with them. Just spending time with a good friend helps keep symptoms lower.

Not having any hobbies or daily activities. If you don’t have enough to do, symptoms will creep up. With too much time on your hands, it’s easy to fall into the pattern of sitting there with symptoms going over and over in your head, getting worse and worse. Having daily activities can keep symptoms lower. Examples include hobbies, work, volunteering, going to a drop-in center, or visiting friends.

Never talking about your problems or stress. Everyone benefits from getting support from other people. Friends, family members, crisis lines, therapist, and social workers can all help you get through tough times, whether it’s stress or symptoms getting worse. If you don’t tell anyone, no one can help you get better. Talking about your problems with a trusted person is very important.

Rain on window

Early Treatment for
Schizophrenia Disorders

Many people feel at a loss when a loved one is diagnosed with schizophrenia or schizoaffective disorder. Should my loved one take antipsychotic medications when they’ve got so many potential side effects? Can therapy help treat a schizophrenia disorder? Are community and job support services worth it? The answer is yes. Research has been pointing towards the effectiveness of early treatment for those with a schizophrenia disorder. NAMI (National Alliance on Mental Illness), a nation-wide nonprofit which advocates for effective treatment and education of people with mental illnesses and their families, recently linked an article summarizing these findings.

Getting Early Treatment

Getting a person early treatment can be challenging, the health system is huge and confusing, and each different state has different laws and resources available for people needing help. I strongly urge you to find a good psychiatrist first, as people with schizophrenia disorders tend to do much better when on antipsychotic medications (and many primary care doctors don’t feel comfortable prescribing those meds). This can be difficult in and of itself, as there aren’t enough psychiatrists in many areas. You many have to wait before you can get an appointment, but this is better than not seeing one at all. Also, ask if there is a waiting list or cancellation list, sometimes you can get in sooner that way.

Finding a good therapist is also important, not only for helping your loved one deal with their schizophrenia symptoms, but also for working through the life changes, losses, and depression that often accompany the disorder. Look for a good fit between your loved one and the therapist, a trusting therapy relationship can be extremely beneficial over time.

Finally, look into the support services for you and your loved one in your area. This can include social workers, financial workers, guardians, representative payees, home health nurses, vocational trainers, and others. They can help you navigate the system and get your loved one the supports to assist them improve their symptoms and their quality of life. Contact your local NAMI chapter for help on locating these resources as they vary from state-to-state.

Finally, getting treatment for your loved one can be especially challenging if your loved one’s have caused them not to think anything is wrong. Sometimes focusing on their goals and how they can achieve them more easily with treatment is helpful. An excellent book about working with people who don’t believe anything is wrong (when others all agree they have a schizophrenia disorder) is I Am Not Sick, I Don’t Need Help! By Xavier Amador. Other strategies include having them see a therapist only briefly every few weeks to check in, letting them have some control over their life and treatment choices, and giving them time to adjust. If you’re unsure how to proceed with this, talk to your local NAMI chapter, there are education and support groups for relatives of people with mental illness, they can likely give you some tips on how to best manage the situation.

Symptom Management: Persistent Symptoms

Boot Camp

What are persistent symptoms?

For many people with schizophrenia disorders, medications don’t completely get rid of all symptoms (though for some they do). The medications do get rid of some symptoms, and make the others less severe, but it can still be helpful for you to learn to manage those that are still there. These symptoms, called “persistent symptoms,” are ones you experience even when you are taking your medication as prescribed. (They are different from “warning signs,” which will be addressed in a later blog.)

Persistent symptoms can be any type of symptom, including voices, visions, paranoia, other delusions, getting stuck on thoughts, trouble with concentration and memory, trouble getting things started, over-interpreting things, problems showing emotions, thinking everyone is focusing on you, and others. If it bothers you even when you’re stable, it’s probably a persistent symptom.

Ok, but how do I cope with these symptoms? Skills to cope with persistent symptoms are critical to quality of life—the better you can manage your persistent symptoms, the more you’ll enjoy everyday life. Everyone’s symptoms are somewhat different, so you may want to try different coping skills until you find the right ones for you.

Examples of persistent symptom coping skills:

  • Make sure you’re taking your meds every day exactly as prescribed. If you don’t think your meds are working right, see your doctor, even if it’s not a relapse or emergency.
  • Learn to recognize the symptoms as symptoms, not reality (do a reality check with someone you trust if you’re not sure), remind yourself it’s just a schizophrenia symptom, not reality.
  • Take PRN (as-needed) meds if you have them for the symptoms that are bothering you.
  • Get support from a trusted person. It can help to talk to someone who cares.
  • Try therapy. Therapy can be extremely helpful in managing symptoms and stress.
  • Focus on something productive, like tasks you have to do at home or work.
  • Do something fun that takes your mind off your symptoms, like TV, music, time with friends, going for a walk, working out, doing hobbies, journaling, or sports.
  • Make sure you take care of yourself physically (eat right, sleep, meds, avoid alcohol and drugs, etc.) and emotionally (get support, get therapy if needed, be kind to yourself, etc.) so that you’re in the best shape you can be to manage your symptoms.
  • Keep a list of people to call and coping skills to use when symptoms are bad. It’s sometimes hard to problem-solve when symptoms are bad, it’s helpful to have a plan ready for when this happens

This is a brief list, there are many other skills you can use to cope with persistent symptoms. Try out different ones to see what fits your style and works on your specific symptoms. And once again, make sure you keep in contact with your doctor, and let him or her know if you feel your meds aren’t working right.