According to the United States Center for Disease Control and Prevention, approximately five million Americans live with the medical diagnosis of Alzheimer's disease. The American health care system has the expectation that a family member will provide the primary care for those individuals affected by Alzheimer's disease.
However, the implicit expectations of family caregiving lead to additional employment challenges that caregivers face when tasked with providing primary care for relatives with Alzheimer's disease. One of the immediate tasks for full-time caregivers should be disclosure. Disclosure means not only letting family members know about your decision to be the caregiver, but also disclosing your decision to your employer. Why is your employer a part of the disclosure? Because if you're going to be a caregiver and maintain your regular employment, at some point those two roles will intertwine.
When my father was first diagnosed with Alzheimer's disease, I informed my employer that I would be working with my mom and brother to help take care of my father. I wanted my employer to know that there would be doctor's appointments and other unscheduled personal occurrences with my dad that may require a need for me to be absent from work.
The initial response from my manager seemed to be supportive and empathetic. However, shortly afterward I was informed that I needed to use personal time off and complete Family and Medical Leave Act (FMLA) forms for the days that exceeded my vacation allowance. Also, it was implied and not specifically stated that too much time off would negatively affect my annual performance review. I was also advised that a leave of absence may be in my best interest if things got progressively worse.
Between my emotions of the diagnosis of my father's disease and the implication that my current employment could be at risk for needing time off to help care for my father, I felt that it would have been better served if I had not said anything at all. My thoughts were that my employer was being punitive towards me because I made a decision to support my family at a critical time in our lives.
During the final seven years of my father's life, I was able to take of time as needed without repercussions from my employer. Dividing up some of the responsibility between me, my brother and our mom made things easier for me. Although my situation resolved without loss of employment, there are many other caregivers that choose to remain employed and things don't work out quite so well.
As Alzheimer's disease progresses in the patient, a caregiver is less likely to engage in more challenging workplace activities or accept additional roles of responsibility, promotions or relocation opportunities. This type of disconnection from the work environment can sometimes cast a doubt on the caregiver's commitment to their employment. During my father's illness, I turned down promotions because I knew I could not fulfill the time commitments.
Research has demonstrated that 66 percent of Alzheimer's caregivers take time off from work to provide the support needed by the relatives suffering from Alzheimer's disease. This data reflects the need for the caregiver to share their commitment between work responsibilities and caregiving responsibilities. In some instances, working caregivers must abandon the older adults for whom they provide care because they cannot afford to be away from their employment responsibilities. The alternative is that the working caregiver must make adjustments to their work schedule and endure whatever challenges or losses arise as a result of their decisions.
Although the implications from my employer seemed a bit harsh, I do understand that they still have an organization to run and they are obligated to the other employees of the company and the stakeholders. It is my hope that the policies and laws will eventually change to make things more amenable to working caregivers.