Social interaction is an integral component of the human experience.¹ Tardive dyskinesia (TD) affects more than just movement, and can have a substantial impact on social and emotional functioning.²

TD can lead to self-consciousness, social isolation, and withdrawal

Even mild symptoms of tardive dyskinesia (TD) can have a profound effect on quality of life and social interactions.^2,3 One study reported that over 40% of patients with TD felt that the involuntary movements had ‘some’ or ‘a lot’ of impact on their ability to talk, carry out their usual daily activities, and socialize.⁴ Furthermore, 75.5% admitted feeling self-conscious or embarrassed about involuntary movements that they are unable to control.⁴ Indeed, the most common negative impacts of TD reported by patients and caregivers were unwanted attention (90.9% and 45.4%, respectively) and issues with speech (72.7% and 45.5%, respectively).⁵  

Stigma associated with TD can limit interaction with others 

In individuals with TD, fears of rejection and negative evaluation by others can lead individuals with TD to avoid entering close relationships, further leading to social isolation and loneliness.⁶ In a 2019 study, after viewing videos of actors simulating orofacial TD movements, approximately 50% of responders would not be “interested in meeting in person for a coffee or a drink” or would not “like to continue talking over Skype”.⁷ Similarly, significantly fewer responders rated the actor with TD movements versus without TD movements as interesting (47.0% vs 65.8%, respectively) or were interested in becoming friends with the actor (43.3% vs 59.8%, respectively).⁷

Social isolation is associated with poor health outcomes

Social isolation results in people feeling unsafe, triggering a negative self-fulfilling prophesy loop in which those who feel lonely actively distance themselves from socializing.⁸ Notably, social groups at greater risk of social isolation and loneliness include people with long-term health conditions and caregivers.⁹ Social isolation and loneliness are also risk factors for poor health and increased mortality; social isolation increases the risk of premature death from all causes and is associated with a 50% increased risk of dementia, 32% increased risk of stroke, and 29% increased risk of heart disease.¹⁰ Similarly, loneliness is associated with higher rates of depression, anxiety, and suicide.¹⁰ 

It is crucial to regularly assess the social impact of TD 

To help manage social isolation, it is important to establish regular visits with a healthcare professional, as this may be the only face-to-face interaction for a person.¹⁰ The impact of TD on all aspects of a patient’s life should be assessed routinely to guide TD treatment decisions, including evaluation of social, physical, vocational, and psychological functioning.¹¹ The impact of TD movements should not only be based on the severity of movements, but also on the effect on social withdrawal and stigmatization.¹¹ In addition to consultation with the patients, information on the impact of TD should be collected from multiple sources, including caregivers and family members.¹¹

In this video, Dr Richard Jackson (University of Michigan, MI, USA) speaks to individuals with TD about the impact of the condition on their relationships with family and friends, and social interactions in public places. 

Click here to hear from Dr Jackson, who talks to patients about the social impact of TD

References

1. Litt E, Zhao S, Kraut R, et al. What Are Meaningful Social Interactions in Today’s Media Landscape? A Cross-Cultural Survey. Social Media + Society 2020;6:1–17.
2. McEvoy J, Gandhi SK, Rizio AA, et al. Effect of tardive dyskinesia on quality of life in patients with bipolar disorder, major depressive disorder, and schizophrenia. Qual Life Res 2019;28:3303–3312.
3. American Psychiatric Association. The American Psychiatric Association Practice Guideline for the Treatment of Patients with Schizophrenia. 2021. 3rd ed. Available at: https://psychiatryonline.org/doi/book/10.1176/appi.books.9780890424841 (Accessed April 2022).
4. Caroff SN, Yeomans K, Lenderking WR, et al. RE-KINECT: A Prospective Study of the Presence and Healthcare Burden of Tardive Dyskinesia in Clinical Practice Settings. J Clin Psychopharmacol 2020;40:259–268.
5. Farber R, Sparta D, Gauthier M, et al. Tardive dyskinesia: patient and caregiver perspectives on signs, symptoms, and impact. Poster presented at the Psych Congress Annual Meeting. September 16–19, 2017, New Orleans, LA, USA.
6. Hatzenbuehler ML, Phelan JC, Link BG. Stigma as a fundamental cause of population health inequalities. Am J Public Health 2013;103:813–821.
7. Ayyagari R, Goldschmidt D, Mu F, et al. An Experimental Study to Assess the Professional and Social Consequences of Tardive Dyskinesia. Poster presented at the Psych Congress 2019. October 3–6, 2019, San Diego, California, USA. Poster 116.
8. Hawkley LC, Cacioppo JT. Loneliness Matters: A Theoretical and Empirical Review of Consequences and Mechanisms. Ann Behav Med 2010;40:218–227.
9. World Health Organization. Social Isolation and Loneliness. 2021. Available at: https://www.who.int/teams/social-determinants-of-health/demographic-change-and-healthy-ageing/social-isolation-and-loneliness (Accessed April 2022).
10. Centers for Disease Control and Prevention. Loneliness and social isolation linked to serious health conditions. 2021. Available at: https://www.cdc.gov/aging/publications/features/lonely-older-adults.html (Accessed April 2022).
11. Jackson R, Brams MN, Citrome L, et al. Assessment of the Impact of Tardive Dyskinesia in Clinical Practice: Consensus Panel Recommendations. Neuropsych Dis Treat 2021;17:1589.

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