Parkinson's disease (PD) was once considered to be a disease primarily affecting the elderly; however, over the past few decades, there has been a shift in the demographics of patients with PD who visit our movement disorders clinic. We now see a significant number of patients with early onset PD (< 50 years of age). In fact, we recently observed that the average age at the onset of PD in India is almost a decade younger when compared to other countries. This is concerning since India has a sizeable youth population, and we have learned that early-onset PD requires a distinct approach for a majority of aspects related to management.
Early-onset PD differs from late-onset PD on numerous fronts, and patients tend to face several unique challenges. For instance, the underlying etiology may often be genetic rather than idiopathic. There are distinct differences in the patterns and types of motor and non-motor symptoms, rates of progression, approaches to disease management, and outcomes. Owing to the age of patients with early onset PD and the stage of life at the time of diagnosis, there is a longer disease horizon, which leads to significant interaction of PD symptoms with social life, ability to work, and significant caregiver burden and burnout. At the workplace, patients may occasionally face discrimination and tend to worry about job insecurities due to inadequate awareness about PD.
There are several misconceptions pertaining to early-onset PD, the most common of which is that it is a disease of the elderly. As a result, patients may not seek timely and appropriate consultations and if diagnosed, they may not be willing to accept it due to the stigma associated with the disease. This invariably leads to the loss of several productive years of their lives. Further, gender discrimination still persists in India, and women frequently face delays in receiving treatment. We recently observed such a scenario when we evaluated a family where three siblings (two brothers and one sister) were affected with early-onset PD, and although the sister was the first to be affected, she was the last to be evaluated.
Another challenge is India’s vast socio-demographic and geographic spread, which causes disparities in access to neurologists/ movement disorder specialists. This is crucial given the lack of specific diagnostic tests for PD and the high reliance on clinical assessments. As mentioned earlier, patients with early-onset PD may have an underlying genetic etiology, and while the expense and ease of access to genetic testing have improved over the years, it remains out of reach for many patients. Moreover, owing to the stigma associated with genetic testing, patients may be reluctant. We believe it is critical to understand and explain to the patient and caregiver that in early-onset PD, the role of genetic testing, extends beyond diagnosis and management of the patient, as these patients are often in the reproductive age group and progeny may be affected.
Further, non-motor symptoms play a significant role in the landscape of PD symptoms and may be more disruptive than motor symptoms. For instance, we evaluated a patient with early-onset PD in whom the major concern was his preoccupation with online gambling, pornography, and excessive consumption of sweets rather than his motor symptoms. Impulse control disorders (e.g. hypersexuality, gambling, excessive spending), which are often precipitated or worsened by dopamine agonists, are prevalent in early-onset PD, of which patients may be reluctant to share about them as they may be deemed culturally inappropriate.
The management of early-onset PD extends beyond treating the motor and non-motor symptoms, and family, career, and social domains should be prioritized (Figure 1). In India, a majority of standard therapeutic options are available, however, the final choice is often driven by his or her ability to pay (Figure 2). Patients with early-onset PD, for example, have a propensity for early levodopa-induced dyskinesia, making dopamine agonists the first option. However, these are more costly than levodopa and the majority of people cannot afford long-term treatment. Furthermore, management can be complicated by the fact that dopamine agonists tend to worsen impulse control disorders as mentioned earlier. Financial limitations also hold true for deep brain stimulation, which, while optimal for certain patients, may be deferred purely due to financial limitations. Lack of adequate medical insurance often exacerbates this issue. Patients may be forced to sell their property to afford the surgery, and even if they undergo the surgery, they may not be able to afford battery replacement. Despite the fact that numerous treatment options are available, none are curative, and patients may not be willing to take these medications. They may visit multiple doctors or try alternative medicine in the hope of a cure eventually to a delay in appropriate management.
Although slow, there has been a significant improvement in the awareness of PD among the general population due to the efforts of PD support groups. An increase in the number of neurologists/movement disorder specialists has resulted in better access to specialists. In addition, telemedicine has improved accessibility for patients residing in remote areas. Furthermore, patients with PD in India are now eligible to receive disability benefits which slightly eases the financial burden. Although there are numerous challenges, steady growth is promising, and the future of PD care in India looks hopeful.
Figure 1. Challenges in management of early onset Parkinson's disease.
Figure 2. Determinants of managing early onset Parkinson's disease.
Dr. Shweta Prasad, MBBS, PhD, is a DBT/Wellcome Trust India Alliance Clinical and Public Health Early Career Fellow at the Dept. of Neuroimaging and Interventional Radiology, National Institute of Mental Health and Neuro Sciences, Bangalore India.
Dr. Pramod Kumar Pal, MD, DNB, DM, FIAN, FRCP (Lon), is a Professor of Neurology, and Movement Disorders specialist at the National Institute of Mental Health and Neuro Sciences, Bangalore India. He is also the Program Director of the post-doctoral fellowship program in Movement Disorders.