Written by Dr. David Bushart Edited by Dr. Sriram Jayabal
How can employment be made more accessible for ataxia patients? What barriers exist? A study of workers and non-workers with ataxia analyzes the benefit of employment, as well as how to reduce risk of injury.
A job can often become part of a person’s identity. When people meet for the first time, one of the first questions that often comes up is “what do you do for work?” While this question can be harmless, it can also be frustrating to non-workers, particularly to those who are actively looking for employment. This may include some patients with cerebellar ataxia.
It can be difficult to manage disease symptoms alongside the stress of a job. However, some patients may find that including a job as part of their routine can be helpful for physical and mental wellness. In these cases, it is important for ataxia patients to have access to fair employment. Despite these benefits, finding a job can prove quite challenging, and unfortunately, ignorant assumptions about the capabilities of workers with ataxia may make finding employment even harder. How can employment be made more accessible to ataxia patients who wish to work?
Determining the work capabilities of ataxia patients
Helping ataxia patients find work might have a significant benefit on their overall quality-of-life. Researchers in Italy designed a study to get a better idea about the capabilities of workers with ataxia and the barriers to employment that they face. The research team, led by Alberto Ranavolo, interviewed both workers and non-workers with ataxia. Importantly, the patients interviewed for this study had been diagnosed with different types of ataxia, including dominantly-inherited ataxias, Friedrich’s ataxia, and other ataxias with unknown causes. Within this group, 24 were currently workers and 58 were non-workers at the time of the study. This allowed the researchers to determine how characteristics such as age, gender, education, and duration of symptoms might impact the ability to work.
The researchers found that workers with ataxia tended to be mostly middle-aged (41-50 years old), and they had likely been in the workforce for some time before diagnosis. For patients who first experienced symptoms at an earlier age, including Friedrich’s ataxia patients, entering the workforce for the first time could be a potential struggle. Further, a significant proportion of the non-workers were over 50 years old, which suggests that age may be an additional hurdle to finding employment. Overall, the study found that workers were able to moderately adapt their working style as their symptoms progressed, with the support of their employers and co-workers.
The researchers wished to address another important question: is there any fundamental difference between employed and unemployed workers with ataxia? Are the working ataxia patients better potential workers than the non-workers, or are they unemployed for other reasons? For these questions, researchers asked ataxia patients a series of questions that focused on the way that they perceive their own abilities to perform work and deal with challenges. This helped them generate a “resilience score” that would reflect their ability to overcome obstacles at work. The researchers found that there are no significant differences between workers and non-workers in terms of disease characteristics, gender, and work resilience. This suggests that non-workers with ataxia are every bit as capable as those who currently work, and most individuals in both these groups possess good-to-excellent residual work ability. Importantly, since 78% of non-workers with ataxia search for work, yet show no differences in work capability, helping ataxia patients find work should be a priority because of the potential benefits it may provide to their physical, mental, and social well-being.
Better awareness may lead to better opportunities
In addition to the obvious reasons of earning an income, there are social and psychological advantages to being employed. A job can help workers feel that they are an active member of their community and are appreciated for their contributions. This is one reason that unemployment can be challenging. There is a large amount of social pressure that accompanies being unemployed, particularly for people who want to be working.
Importantly, the authors note that on-the-job injury is a concern for workers with ataxia. This study found that 75% of workers reported minor injuries that include falls and burns, possibly due to poor motor coordination. This is a primary concern for not only workers with ataxia, but also their employers and family members. While there can be a risk of injury at work, the authors note that ataxia patients may be able to adapt their activity levels and work styles to help manage symptoms, allowing them to remain capable workers even as symptoms progress. Employers can provide further support with ergonomic tools to help workers with ataxia minimize injuries. Employment opportunities should be made available to patients who wish to work because of the rehabilitative aspect that it can provide, and for the ability to expand their social support network.
It is important to be an advocate for workers with ataxia. Positive change can come through raising awareness of the abilities that ataxia patients can have in the workforce, and the benefits that employment can provide. For those who choose to work, finding a job shouldn’t be a hurdle that is too high to clear.
Dominantly-inherited: Inheriting a copy of the mutant gene from one parent will cause the disease.
Conflict of Interest Statement
The authors and editor declare no conflict of interest.
Citation of Article Reviewed
Ranavolo A, Serrao M, Varrecchia T, Casali C, Filla A, Roca A, Silvetti A, Marcotulli C, Rondinone BM, Iavicoli S, Draicchio F (2019) The working life of people with degenerative cerebellar ataxia. Cerebellum 18:910-921. https://doi.org/10.1007/s12311-019-01065-x