A diagnosis of early onset dementia does not automatically mean the end of a person's career. While cognitive and physical abilities will decline over time, many individuals in the early stages can remain productive and engaged in the workplace with the proper support. Continued employment can offer significant benefits, including promoting independence, increasing self-esteem, and maintaining social connections. The decision to continue working depends on several factors, including the type of job, the rate of disease progression, and the employer's willingness to provide accommodations.
Legal Protections and Employee Rights
In the United States, early onset dementia is considered a disability under the Americans with Disabilities Act (ADA), which protects employees from discrimination and requires employers to provide reasonable accommodations. The ADA applies to employers with 15 or more employees and covers all aspects of employment.
Disclosure to Your Employer
Deciding whether and when to disclose a diagnosis to an employer is a complex choice. To receive accommodations under the ADA, an employee must disclose their condition. Once disclosed, employers must treat this information confidentially. In safety-sensitive jobs, disclosure may be legally required. A supportive company culture can make disclosure easier.
Making the Decision to Stay or Go
This is a personal choice; some may find purpose in continuing to work, while others prefer to focus on their health and family. Thoughtful consideration with support from family and professionals is important. Working can provide purpose and social connection, while leaving can reduce stress and allow focus on well-being or other activities like volunteering.
Common Workplace Accommodations
Employers are required to provide reasonable accommodations to help employees with dementia perform essential job functions. These can include simplifying tasks, using memory aids like technology or checklists, offering flexible schedules, creating support systems with colleagues, and adjusting the workspace to reduce distractions.
When Accommodations Aren't Enough
As the disease progresses, accommodations may become insufficient. Employers and employees must then manage a respectful transition, which may involve disability benefits, early retirement, or transitioning to part-time or volunteer roles.
Comparison of Strategies for Employees vs. Employers
| Strategy | Employee Perspective | Employer Perspective |
|---|---|---|
| Initiating the Conversation | Employees must decide when and how to disclose their diagnosis, considering factors like trust and job responsibilities. | Employers should be sensitive and confidential, focusing the discussion on performance issues, not the diagnosis. |
| Identifying Accommodations | Employees should provide input on what accommodations would be most helpful, as they know their own limitations best. | Employers should engage in a conversation with the employee and relevant medical professionals to find the most effective and reasonable adjustments. |
| Protecting Legal Rights | An employee's ADA rights are triggered upon disclosure, protecting them from discriminatory practices like unfair dismissal. | Employers must understand and abide by ADA regulations, documenting efforts to provide reasonable accommodations. |
| Planning for the Future | Employees should explore financial options like disability benefits and early retirement, as well as alternative meaningful activities. | Employers can help by clearly outlining available benefits, such as short-term disability or pension plans. |
| Fostering a Supportive Environment | An open and supportive workplace can reduce the fear and stigma associated with dementia, encouraging earlier disclosure. | Training for managers and HR on how to handle cognitive impairment with compassion is crucial for building a "dementia-friendly" workplace. |
Conclusion
Navigating employment after an early onset dementia diagnosis is a complex journey. Many can continue working with supportive employers and accommodations. This requires partnership, understanding legal rights, and planning. Prioritizing well-being and finding purpose in new ways as the disease progresses is key.
Steps to Continue Working with Early Onset Dementia
- Consult Medical Professionals: Discuss your diagnosis and its potential impact on your work with your doctor.
- Consider Disclosure: Carefully weigh the decision to inform your employer. Seek legal advice regarding your ADA rights.
- Research Accommodations: Explore potential accommodations like flexible hours or assistive technology. The Job Accommodation Network (JAN) is a helpful resource.
- Plan the Conversation: If disclosing, prepare for the discussion and consider bringing a trusted person.
- Explore Alternative Activities: Recognize the value of activities beyond work, such as volunteering or hobbies, for purpose and connection.
The Role of Early Intervention
Early diagnosis and intervention are vital for managing early onset dementia and extending the time an individual can work. It allows for early planning regarding legal and financial matters and the implementation of strategies to preserve cognitive function. Early intervention empowers individuals to live fulfilling lives for longer.
Note: Safety-sensitive jobs in industries like healthcare or transportation may necessitate leaving a role sooner due to cognitive decline.
Proactive steps allow individuals with early onset dementia to maintain control over their careers and transition with dignity.
Bryant Legal Group offers additional insights on working with dementia and when to leave your job.
