Sharing a dementia diagnosis is a challenge facing thousands of Americans.
There are many factors to consider when you’re still active in the workforce but have received a diagnosis of dementia. How has your job performance been affected? Have you been able to devise a system for maintaining your performance levels, or are you not able to safely proceed with the tasks of your job?
For a neurosurgeon, early stages of dementia would probably require an immediate end to their career. However, someone in a less demanding occupation, might be able to figure out a way to continue working. The situation is never easy, explains Next Avenue in the article “Dementia Diagnosis: When Do You Go Public?”
In one case, a man who was diagnosed at age 58 with minor cognitive impairment had found workarounds but knew that he was heading into dementia. He shared his information with his employer, colleagues and professional acquaintances, as well as his large family, which includes a nearly 90-year old father. Not everyone can have these conversations, and few are ever prepared for them.
According to the Alzheimer’s Foundation, 200,000 Americans have the early onset variation of Alzheimer’s, meaning they are 65 or under when they start having symptoms. Another 5.7 million Americans who are 65 or older live with Alzheimer’s.
The director of palliative care and medical ethics care at New York University, Dr. Hamilton, has delivered the bad news to hundreds of patients. She says that most of them are not surprised with the diagnosis. They are scared and worried, but rarely surprised. She believes that the rewards outweigh the risks, when it comes to sharing this news, and that families live with less uncertainty when everyone knows what has happened. This knowledge allows the family to move forward with practical planning.
The first step is to get legal and financial matters in order. That means an estate plan, including a health care directive and a Power of Attorney for financial matters and a health care proxy to make decisions, when the person no longer can do so themselves.
It’s a scary conversation to have with employers. It may be that the federal civil rights law, the Americans with Disabilities Act (ADA) prohibits discrimination and requires employers to make “reasonable accommodations” for employees with disabilities. However, this isn’t always what happens.
Dr. Sujatha Hamilton says that many people today need to work past age 65, and disclosing their illness is helpful, if their employer can have their duties modified or their schedules restructured. They are more likely to be terminated or forced into retirement, if their employer does not know why things are going wrong, when their performance starts to suffer.
As part of planning for a next stage of life after a dementia diagnosis, care directives and estate plans may need to be revised. Your estate planning attorney will be able to help make the changes to the estate plan and what plans need to be made for long-term care, as the disease progresses.
Reference: Next Avenue (Feb. 4, 2019) “Dementia Diagnosis: When Do You Go Public?”
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