Living with a mental health disorder is challenging, but the anxiety that accompanies a diagnosis of mental illness isn't limited to the patient. One in five adults and one in six youths between the ages of 6 and 17 in the US face mental health disorders each year, according to the National Alliance on Mental Illness. The family members and close friends of these patients number in the millions. Caregivers often share the patient's anxiety and frustration, and they may feel helpless because they don't understand why their loved one refuses to seek help, take medications, or even acknowledge a problem. This is especially problematic in relation to the patient's presentation to a hospital or healthcare provider with first episode psychosis (FEP) and the correlated phenomena of anosognosia, or lack of insight.
Virtually all nurses will care for a patient with a mental health disorder. Therefore, it's important to understand anosognosia and be ready to develop strategies for caregivers to contend with this condition. The scenario of Frankie's experience with FEP illustrates how these issues may present in the hospital setting.
Frankie's FEP threw into disarray what had until recently been a tranquil home life. Police accompanied the 18-year-old to the ED this morning. Frankie's family also came to the ED and informed the triage nurse that he had been awake every night for the past week screaming and, at other times, laughing inappropriately. The family also stated that Frankie hadn't showered or changed any clothes during this week. Before the incident leading to the ED admission, he had never exhibited the type of behavior they associated with mental illness. Despite the family's many requests, Frankie refused to be seen by a healthcare provider. When he became violent shortly before dawn, the family felt they had no choice but to call 911 for police and emergency medical services.
While in the ED, Frankie received an initial nursing assessment, blood work, and medical evaluation, which were all within normal limits. He was then transferred to the Comprehensive Psychiatric Emergency Program (CPEP) for a mental health evaluation. At the CPEP, Frankie received a diagnosis of schizophrenia and was admitted to the hospital's inpatient mental health unit. The family confided to the psychiatric nurse that they're struggling to care for Frankie and at a loss for where to turn for help.
Frankie denies that there's anything amiss with his mental state. Instead, he insists that it's his family who has a problem. According to Frankie, despite all appearances to the contrary, his family is trying to poison him and has also plotted with an intelligence agency to have him killed. In short, Frankie is exhibiting rather typical signs of not only the primary diagnosis, but also anosognosia.
The term anosognosia was initially used to described neurologic conditions associated with stroke and dementia. Later, researchers estimated that 50% of patients with schizophrenia and 40% of patients with bipolar disorder exhibit signs of anosognosia. The patient is unable to assimilate new information about deficits because of a brain lesion or psychopathologic problem. As a result, the patient will deny or minimize his or her mental illness. Patients may rationalize psychiatric symptoms or confabulate, filling in memory gaps by creating imaginary experiences.
Although anosognosia may not be unusual, it's a source of high stress among family, friends, and other caregivers of patients with mental health disorders. In addition, research on treatments for anosognosia has been sparse. There's no medication that's been proven effective to treat anosognosia in patients with a mental illness. Medications used to treat schizophrenia may improve anosognosia; however, treatment regimens may not be adhered to by some of these patients. The benefits of psychoeducation and cognitive therapy haven't been found to be statistically significant when used for anosognosia. However, one researcher found that yoga had a statistically significant association with improved insight in patients with schizophrenia. As a result of the lack of effective treatment, anosognosia may persist and interfere with treatment of mental health disorders such as schizophrenia and bipolar disorder.
The expectation of care is recovery. The road to recovery may be long and have more than a few difficult moments but working together with caregivers at home and in the hospital can give patients the best chance of living a full and productive life. Here are some strategies that can be used to assist family and other caregivers to cope with a patient's FEP.
In 2008, the National Institute of Mental Health launched the RAISE (Recovery After an Initial Schizophrenia Episode) project. This initiative was developed to study different aspects of coordinated specialty care treatments for patients experiencing FEP. Since the start of this program, researchers continue to publish their findings on how best to reduce the time of untreated schizophrenia and place the patient on track toward treatment. The RAISE website functions as a valuable resource of information on FEP for patients and caregivers, providing guidance on treatment options and coping strategies (www.nimh.nih.gov/health/topics/schizophrenia/raise/index.shtml).
Perhaps the most important ideas that we can impart to the family are patience and dignity. Encourage family members not to become confrontational with a patient who refuses to take medication no matter how frustrated he or she may become. The family should be invited to listen to the patient and explain the importance of following the prescribed treatment. Willing family members should clarify that the medication has been prescribed to help the patient improve. This calm and dignified approach will allow patients to become partners in their care plan.
Another approach toward medication adherence involves the concept of “personal medicine.” Focus the patient and family on the social roles, activities, and so on that the patient most values. Family members and other caregivers can then emphasize how medication adherence will allow the patient to function in these capacities.
If the patient concurs, incorporate strategies designed to include loved ones in his or her care. For example, suggest pill reminder containers or a smartphone app to aid the patient in remembering when to take medication. Encourage family members to observe the nurse administer and the patient take medications.
The healthcare team should start planning for discharge on the day of admission. A patient who has a psychotic disorder may be hearing distressing voices and, therefore, may have difficulty understanding discharge instructions. Ask the patient to repeat back the discharge instructions to ensure comprehension. It may also be beneficial for the patient to have a family member present to reinforce the discharge instructions. A copy of the discharge instructions, as well as a list of the patient's medication, should be provided as a resource tool. Encourage family members to assist with treatment by volunteering to take the patient to healthcare provider appointments and pick up medication refills when necessary.
We can act as a resource for important information concerning the patient's diagnosis, related conditions such as anosognosia, and postdischarge treatment options. It's vital for a person with a mental health diagnosis, as well as their loved ones, to understand that such a diagnosis isn't the end of living a productive and satisfying life.
Optimal level of wellness
After spending 3 weeks on the inpatient mental health unit, Frankie was discharged home. Discharge instructions were explained to Frankie and his family. Follow-up appointments were made with the mental health care provider and information about support groups in the community was shared. Because the hospital's healthcare team incorporated Frankie's family in his treatment plan and discharge, he's returning home confident of their support, respect, and love. Together, this formidable team will restore Frankie to an optimal level of wellness.
Priority assessment for patients with anosognosia
- Safety: Assess for suicidal and homicidal ideation.
- Reassure: Assure the patient that he or she is safe.
- Nonjudgmental: Assure the patient that you aren't judging his or her beliefs.
- Empathize: Display understanding of the patient's frustration.
- Patience: Display patience with the patient's lack of insight.
- Deescalate: Help family members understand that they can help the patient by moving beyond their frustrations.
- “Motivational enhancement therapy:” Use this therapy to help the patient objectively look at his or her condition.
- “Personal medicine:” Emphasize how treatment will enable the patient to accomplish roles and functions that mean the most to him or her.
- Educate: Help the patient and his or her family access resources that will reduce frustration and increase treatment adherence through education about anosognosia.
- Resilience: Emphasize patient and family resilience through teamwork.
Remember TEAM RESTORE to provide support for family members as they work with the healthcare team to restore the patient to an optimal level of wellness.
- Take care of yourself. Encourage family members to address their own health. Advise them to take time for themselves. Although this advice may seem odd at first to many family members, remind them that the recommended procedure during an emergency on an aircraft is for each passenger and crew member to deploy their own oxygen mask before helping others.
- Educate yourself. Urge family members to educate themselves about the patient's disorder. To become an advocate for the patient, they'll need to understand the illness. Family members should also learn about prescribed medications and treatments to better aid the patient's recovery.
- Ask for help. Enlist the assistance of the entire family in supporting one another during this challenging time. Initially, it isn't unusual for family members to be in denial during a mental health crisis. Siblings should be encouraged to express their fears and frustrations over this life event and the impact it may have on family dynamics. Remind them that in supporting one another, they'll be supporting the patient as well.
- Make a plan. Advocate for family members to assist the patient with developing a medication adherence plan and attending therapy sessions.
- Respect. Explain to family members that the patient isn't deliberately acting out. Instead, the patient's behavior, which they may find bizarre, offensive, or even dangerous, is part of the disorder. Assist the family in understanding that no matter how different the patient seems to have become as a result of the illness, he or she is entitled to our respect.
- Empathy. Ask family members to place themselves in the patient's shoes. Patients and caregivers often feel isolated and victimized by a judgmental society. Nurses can break through this isolation by exhibiting genuine empathy and validating their concerns.
- Safety first. Ensure the family is aware that safety is always a priority. Instruct family members on what to do if the patient decompensates. Contact information for healthcare providers should be shared with family members and made easily accessible. Family members should be instructed not to hesitate before reaching out for assistance if the patient becomes a threat to him- or herself or others.
- Trust. Remind family members that people share their feelings with those they trust. Just sitting quietly with the patient may develop that trust.
- Open communication. Remind family members to take a breath and listen. Listening is a vital component of therapeutic communication.
- Resume life. Encourage the family to resume their normal activities. Although it may be difficult at first, activities that include the whole family can be useful in restoring normalcy to what otherwise may be a chaotic situation.
- Expect recovery. Family members need encouragement almost as much as patients. The goal is for the patient to return to his or her optimal level of functioning. Recovery should be an expectation despite the possibility of multiple setbacks. Consistent encouragement from loved ones reinforces to the patient their love, care, and support.
on the web
Patient and family outreach resources
National Alliance on Mental Illness
Hours: Monday through Friday, 10 a.m. to 6 p.m. EST Call: 1-800-950-6264 Text NAMI to 74174
National Suicide Prevention Lifeline
Hours: 24 hours a day, 7 days a week Call: 1-800-273-TALK (8255) Text HELLO to 741741 Veterans crisis line: Call 1-800-273-TALK (8255) and press 1 or text to 838255
Acharya AB, Sánchez-Manso JC. Anosognosia. StatPearls. 2020. www.ncbi.nlm.nih.gov/books/NBK513361
Amador XF, David A. Insight and Psychosis: Awareness of Illness in Schizophrenia and Related Disorders
. 2nd ed. New York, NY: Oxford University Press; 2004.
Bauer R, Sterzinger L, Koepke F, Spiessl H. Rewards of caregiving and coping strategies of caregivers of patients with mental illness. Psychiatr Serv
Budak FK, Yilmaz E. The effect of yoga on clinical insight and medication adherence in patients with schizophrenia - a randomized controlled trial. Eur J Integr Med
Butler RW, Light R. Late diagnosis of neurodegenerative disease in children: anosognosia by proxy. Clin Neuropsychol
Chan RCH, Mak WWS, Chio FHN, Tong ACY. Flourishing with psychosis: a prospective examination on the interactions between clinical, functional, and personal recovery processes on well-being among individuals with schizophrenia spectrum disorders. Schizophr Bull
Deegan PE. The importance of personal medicine: a qualitative study of resilience in people with psychiatric disabilities. Scand J Public Health Suppl
Dondé C, Senn M, Eche J, Kallel L, Saoud M, Brunelin J. Well-informed but not aware: the P.A.C.T.®
psychoeducation program for schizophrenia improves knowledge about, but not insight into, the illness. Asian J Psychiatr
Emami S, Guimond S, Chakravarty MM, Lepage M. Cortical thickness and low insight into symptoms in enduring schizophrenia. Schizophr Res
Farhall J, Cugnetto ML, Mathews S, et al. Outcomes and change processes of an established family education program for carers of adults diagnosed with a serious mental health condition. Psychol Med
Haselden M, Dixon LB, Overley A, et al. Giving back to families: evidence and predictors of persons with serious mental illness contributing help and support to families. Community Ment Health J
Lehrer DS, Lorenz J. Anosognosia in schizophrenia: hidden in plain sight. Innov Clin Neurosci
Mahone IH, Maphis CF, Snow DE. Effective strategies for nurses empowering clients with schizophrenia: medication use as a tool in recovery. Issues Ment Health Nurs
Mueser KT, Meyer-Kalos PS, Glynn SM, et al. Implementation and fidelity assessment of the NAVIGATE treatment program for first episode psychosis in a multi-site study. Schizophr Res
National Council Medical Director Institute, Medication matters: causes and solutions to medication non-adherence. 2018. www.thenationalcouncil.org/wp-content/uploads/2018/09/medication-non-adherence-082918.pdf
Nordby K, Kjønsberg K, Hummelvoll JK. Relatives of persons with recently discovered serious mental illness: in need of support to become resource persons in treatment and recovery. J Psychiatr Ment Health Nurs
Pastore P, Griswold KS, Homish GG, Watkins R. Family practice enhancements for patients with severe mental illness. Community Ment Health J
Prigatano GP. The Study of Anosognosia
. London, UK: Oxford University Press; 2010.
Semahegn A, Torpey K, Manu A, Assefa N, Tesfaye G, Ankomah A. Psychotropic medication non-adherence and associated factors among adult patients with major psychiatric disorders: a protocol for a systematic review. Syst Rev