Tardive dyskinesia (TD) is an involuntary movement disorder that negatively affects daily functioning and general well-being of patients.^1,2 TD disrupts various aspects of life not only for patients but also for their caregivers.³ The results of two surveys have been collated on a website to show what a day in the life of a patient with TD or their caregiver looks like. 

TD is caused by dopamine-receptor blocking agents, primarily antipsychotics.² It is estimated that one in four people taking antipsychotics develop TD, with a higher prevalence in patients using typical compared with atypical antipsychotics.² The incidence of TD is expected to increase further with the rising use of antipsychotics in schizophrenia and mood-related disorders, such as major depressive disorder (MDD) and bipolar disorder.^1,4 

Two surveys were developed to assess the burden of TD; one for patients with TD and schizophrenia or MDD, and one for caregivers providing unpaid care for patients with TD for more than three months.⁵ The impact of TD on daily life and on the treatment of the underlying psychiatric disorder was measured.⁵ Caregivers also completed a separate survey assessing the impact of TD on their psychological well-being, daily activities, and professional lives.⁶ 

Living with TD and schizophrenia⁷

The daily activities of patients with TD and schizophrenia can be affected from when they wake up until they go to sleep. Of the 269 surveyed patients, 74 had TD and schizophrenia. The majority reported difficulty brushing their teeth and bathing or showering. Eating and speaking were two of the main physical concerns among patients, resulting in patients eating slowly to avoid choking or feeling frustrated by their speech difficulties. TD also interferes with socializing and the ability to run errands, with more than 80% of patients saying they felt embarrassed, sad, anxious, shy, or angry as a result of their TD. Caregivers are also impacted by TD: 40% said helping with bathing or showering was a burden, and over half said caring for someone with TD impaired their work and interfered with socializing. Additionally, TD can have an impact on the treatment of schizophrenia, with over half of patients reported to skip or reduce antipsychotic doses, and 43% reported to stop visiting the doctor. 

Learn more about living with TD and schizophrenia 

Living with TD and MDD^7,8

Between 50 and 70% of patients with TD and MDD reported an impact of TD on bathing, showering, and eating. The majority of patients reported feeling embarrassed, sad, anxious, or angry, leading to many limiting their social activities. Most patients with MDD specifically highlighted the impact of TD on the ability to fall asleep or stay asleep, do schoolwork, focus, hold things, and exercise. The burden for caregivers of patients with TD and MDD was similar to those caring for patients with TD and schizophrenia. The treatment of MDD can also be affected, with 43% of patients reported to stop taking their antipsychotic medication, and over a quarter reported to skip doses or stop visits to the doctor. 

Explore the impact of living with TD and MDD 

Conclusions

TD imposes a substantial burden on patients’ physical functioning, mental well-being, and social activities.⁵ Results from these surveys suggest that better TD symptom control may reduce patient burden by decreasing disruptions and nonadherence to antipsychotic treatment required for underlying psychiatric conditions.⁵ It is also important to recognize the impact of TD on the activities and psychological well-being of caregivers supporting patients with TD.⁶

References

1. 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.
2. Carbon M, Hsieh CH, Kane JM, et al. Tardive Dyskinesia Prevalence in the Period of Second-Generation Antipsychotic Use: A Meta-Analysis. J Clin Psychiatry. 2017;78:e264–e278.
3. Cutler AJ, Caroff SN, Tanner CM, et al. Caregiver-Reported Burden in RE-KINECT: Data From a Prospective Real-World Tardive Dyskinesia Screening Study. J Am Psychiat Nurses Assoc. 2021; doi: 10.1177/10783903211023565.
4. Dhir A, Schilling T, Abler V, et al. Estimation of epidemiology of tardive dyskinesia in the United States. Poster presented at the American Academy of Neurology 2017 Annual Meeting; Boston, MA, USA; April 22–28, 2017. P2.018.
5. Jain R, Ayyagari R, King S, et al. Impact of Tardive Dyskinesia on Physical, Psychological, and Social Aspects of Patient Lives: A Survey of Patients and Caregivers in the United States. Poster presented at Psych Congress 2021; San Antonio, TX, USA; October 29–November 1, 2021.
6. Jain R, Goldschmidt D, King S, et al. Caregiver Burden of Tardive Dyskinesia in the United States: A Survey of Impact on Caregiving Tasks, Psychological Well-Being, and Daily Activities. Poster presented at Psych Congress 2021; San Antonio, TX, USA; October 29–November 1, 2021.
7. Living with tardive dyskinesia and schizophrenia summary. Available at: https://living-with-td.com/living-with-td-and-schizophrenia-summary/ [Accessed 31 May 2022].
8. Living with tardive dyskinesia and major depressive disorder summary. Available at: https://living-with-td.com/living-with-td-and-mdd-summary/ [Accessed 31 May 2022].

NPS-US-NP-01060