Parkinson's disease ranks among the most common late-life neurodegenerative diseases, affecting approximately 1.5% to 2.0% of the population older than age 60 years. Young onset Parkinson’s (before age 40) occurs in 5-10% of people diagnosed while 20% of those affected are under the age of 50.
Regardless of age of onset, we are all united to some extent by a similar life experience that Parkinson’s brings but those with YOPD may face very different obstacles, from diagnosis to disease progression and response to treatment to duration of disease – those with YOPD must live longer with the complications of this diagnosis.
Not to minimize in any way the challenges that those with late onset disease face – diagnosis later in life leads to a number of unique issues as well. So although the diagnosis may be shared, the experience of how this disease manifests may be different in many ways.
First of all those with young onset disease don’t necessarily present the same way as their older counterparts. Studies have shown that in the young-onset form of the disease patients are more likely to present with rigidity and pain; cramps and dystonic posturing occurring more often than in those with late onset disease. This is likely why an initial diagnosis of tendonitis particularly involving the upper limb is quite common in the early stages of the disease for many younger patients. Partly due to the atypical nature of symptoms at presentation along with the fact that clinicians still tend to rule out Parkinson’s due to a patient’s younger age , studies have shown that physicians take longer to diagnose early onset patients. In one particular study that discrepancy in time to diagnosis was on average 15 months longer for younger patients.
YOPD patients are also at increased risk for non-motor symptoms of PD (such as sleep disorder, depression, anxiety, constipation, low energy, urinary issues, apathy and so on) although they have a lower rate of dementia. Early onset patients also suffer an increased rate of dystonia initially and during treatment,
With regards to management, younger patients have an increased rate of dyskinesias in response to L-DOPA treatment. YOPD patients are more likely to develop treatment related complications such as motor fluctuations and dyskinesias earlier in the course of their disease. Schrag et. al. found that 100% of the YOPD subjects in their study had developed treatment complications within 10 years or less of the diagnosis.
Regarding course of illness, the available evidence suggests that PD patients with a younger age at onset also have a slower disease progression. In one study YOPD patients took significantly longer (2.9 years) to reach H&Y Stage 1 from symptom onset compared to late onset patients (1.7 years). (Jankovic et al.)
Therefore there are many medical and management challenges that are unique to the YOPD group. Not only is the management of symptoms difficult but also Young-onset Parkinson's disease (YOPD) patients have psychosocial issues that create more challenges. Studies have shown that a younger age at onset was significantly associated with worse overall quality of life scores. Younger onset was also a risk factor for poor emotional well-being independent of depression status.
Those with YOPD are diagnosed during the most productive years of their lives, at the peak of their careers, as they are establishing themselves financially, raising families, often young families who themselves are living hectic life schedules. Issues that may otherwise not be major obstacles are raised - around employment, financial security, relationships, parenting and future goals. These psychosocial problems require as much attention as the medical problems; they negatively impact the emotional stability of both the patient and family, interfering with all relationships. YOPD patients can benefit from a team approach to their treatmentin order to address all areas of concern and to maximize quality of life.
Works Cited
Rana, Abdul Qayyum, Ishraq Siddiqui, and Muhammad Saad Yousuf. "Challenges in Diagnosis of Young Onset Parkinson's Disease." Journal of the Neurological Sciences323.1-2 (2012): 113-16. Print.
Schrag, A. "Dyskinesias and Motor Fluctuations in Parkinson's Disease: A Community-based Study." Brain123.11 (2000): 2297-305. Print.
Silver, Greg A., BBA, Kevin D. Vuong, MA, and Joseph Jankovic, MD. Young-Onset versus Late-Onset Parkinson's Disease: Clinical Features and Disease Progression. Baylor College of Medicine. N.p., n.d. Web.