People with neuropsychiatric disorders often have poor mental health, which frequently stems from the experience of social isolation and loneliness caused by stigma. Stigma is a key barrier to medication adherence among people with schizophrenia,¹ as the stigma associated with tardive dyskinesia negatively impacts how people are perceived socially and by employers.²

At the American Psychiatric Association Annual Meeting in 2022, Dr. Craig Chepke (Excel Psychiatric Associates and University of North Carolina School of Medicine, NC, USA) gave a presentation on how to address the mental health implications of neuropsychiatric disorders, using case studies to illustrate the need for an individualized approach and the consideration of multiple domains when assessing the overall impact of tardive dyskinesia on life and function. 

Social isolation and loneliness are risks among people with neuropsychiatric disorders 

Dr Chepke introduced the case of a 67-year-old woman visiting his practice for the first time. Her chief complaint was the return of her depression; during the prior 6 months, she experienced classic symptoms of depressive mood, low energy, interrupted sleep, and poor appetite.

Examination of her history revealed a diagnosis of bipolar I disorder, with several prior hospitalizations for mania. Up until 3 years ago, she had been managed with an oral second generation antipsychotic (AP) but was not taking any AP medication at the time of her visit. Given her prior AP use and having noticed some abnormal movements during her consult, Dr. Chepke performed an Abnormal Involuntary Movement Scale (AIMS) examination, which revealed a total score of 5 (lips = 2, tongue = 1, hands = 2)

While the AIMS score may suggest mild movements, the number did not reveal anything about the impact on the patient’s psychological and social issues, highlighting the importance of exploring these aspects further. Conversations uncovered that she had retreated socially from her friends and family after they began noticing her mouth and hand movements. This seemed to be the real cause of her low appetite and weight loss. Hence, despite the low AIMS score, the impact of TD on this woman was severe. In addition, as a widowed female, the patient had risk factors for loneliness,³ which is associated with depression.⁴

Listen to Dr Chepke describe the ‘loneliness loop’, which exacerbates problems for people who experience social isolation.⁵

Addressing stigma is key in neuropsychiatric disorders

Stigma can be defined as “an attribute that is deeply discrediting”.⁶ Although one study suggests that almost two-thirds of people with schizophrenia perceive some form of stigma related to their condition,⁷ Dr Chepke suggested that this number is too low, and almost all patients experience stigma and alienation, which combine to make a potent negative interaction with social deficits and self-esteem difficulties and increased depression and anxiety. Stigma is also a risk for non adherence to treatment,⁷ as people worry about others finding out they are taking AP medications, so do not take them. 

Dr Chepke also highlighted the importance of language in overcoming stigma. He describes a study about the effect of language used to describe people with schizophrenia.⁸ 

An individualized care approach is essential for people with schizophrenia

An individualized approach is necessary when caring for people with schizophrenia.⁹ Although it seems obvious to consider patients’ views, Dr Chepke asserted that it doesn’t always happen in practice, and management is too often authoritarian. He questioned how many people with schizophrenia would be likely to adhere to their treatment if they did not feel supported and validated as human beings.

People with schizophrenia are capable of making their own decisions.¹⁰ When their condition is not considered as an illness, but as a lived experience that is valuable to the decision-making process, patients feel listened to and not just medicated. Therefore, it is important to create a positive relationship by giving them options, providing education, and understanding what matters to them, rather than recommending a course of treatment that is based on the clinician’s own personal biases and beliefs about what is important.

Dr Chepke highlighted the need to explore the impact of the patient’s disorder across a number of different domains.¹¹ They may not fully recognize or articulate the impact of the disorder on their life, until their healthcare provider digs deeper and asks specific questions.

Dr Chepke describes how this may be true for people with tardive dyskinesia. 

To conclude, Dr Chepke summarized another case study to demonstrate the importance of looking beyond AIMS score when assessing the impact of TD on a patient, emphasizing that there is always more than meets the eye.

Learn more by viewing the full APA presentations.

References

1. Hudson TJ, Owen RR, Thrush CR, et al. A pilot study of barriers to medication adherence in schizophrenia. J Clin Psychiatry 2004;65:211–6.
2. Ayyagari R, Goldschmidt D, Mu F, Caroff SN, Carroll B, et al. An experimental study to assess the professional and social consequences of tardive dyskinesia. Clin Psychopharmacol Neurosci 2022;20:154–66.
3. Petersen J, Kaye J, Jacobs PG, et al. Longitudinal relationship between loneliness and social isolation in older adults: results from the Cardiovascular Health Study. J Aging Health 2016;28:775–95.
4. Beutel ME, Klein EM, Brähler E, et al. Loneliness in the general population: prevalence, determinants and relations to mental health. BMC Psychiatry 2017;17:97.
5. Hawkley LC, Cacioppo JT. Loneliness matters: a theoretical and empirical review of consequences and mechanisms. Ann Behav Med 2010;40:218–27.
6. Goffman E. Stigma: notes on the management of spoiled identity. ed. New York: Simon & Schuster, Inc. 1963.
7. Gerlinger G, Hauser M, De Hert M, et al. Personal stigma in schizophrenia spectrum disorders: a systematic review of prevalence rates, correlates, impact and interventions. World Psychiatry 2013;12:155–64.
8. Granello DH, Gorby SR, et al. It’s time for counselors to modify our language: it matters when we call our clients schizophrenics versus people with schizophrenia. J Couns Dev 2021;99:452–61.
9. Swedish Council on Health Technology Assessment. Schizophrenia – pharmacological treatments, patient involvement and organization of care. SBU Yellow Report No. 213. November 2012. 
10. Carrotte ER, Hartup ME, Lee-Bates B, Blanchard M, et al. “I think that everybody should be involved”: What informs experiences of shared decision-making in supporting people living with schizophrenia spectrum disorders? Patient Educ Couns 2021;104:1583–90.
11. Jackson R, Brams MN, Citrome L, et al. Assessment of the impact of tardive dyskinesia in clinical practice: consensus panel recommendations. Neuropsychiatr Dis Treat 2021;17:1589–97.

NPS-US-NP-01150