In my completed dissertation pilot study last year, I had the opportunity to interview several people (P1, P2, P3 below) who were experiencing signs and symptoms of dementia while still employed. Two were diagnosed while still working, and another was diagnosed after losing their job.
Five themes uncovered from this study were especially poignant to each of the participants and care partners.
1. Meaning of work
2. Familial / Social support
3. Concern for the care partner
4. Financial impact
5. Accepting dementia in their lives
The meaning of work was derived from the participants' comments that stated how each participant was not ready to separate from employment. Each enjoyed working, feeling productive and felt like they were still able to contribute to the success of their organizations. The concern for the care partner represented a fear of becoming a burden when the mental and physical impairments became too much for the carer to handle. Familial/social support refers to the isolation felt by the participants once they disclosed their diagnosis to family and friends. The financial impact reflected the concern of participants’ reduced income after job loss, the possibility of the care partner having to reduce hours or separate from work to care for participants, and the potential cost of placing the participant in a long-term care facility or nursing home. Finally, accepting dementia in their lives is a conscious effort to accept the diagnosis, understand the prognosis, and live as best and as full of a life as possible.
(I'll discuss these in more detail in later posts)
All participants described not being ready to retire or separate from their employer. One voluntarily left after realizing they either posed a risk to others at their place of employment or realized they could no longer perform their jobs effectively. Another disclosed their diagnosis to the employer and was given an assistant to help with various tasks; however, in the end, the cognitive impairment was too severe to continue. Another was terminated after failing to meet performance objectives after being put on a Performance Improvement Plan (PIP). Below are some of the results of the interview:
P1 began experiencing trouble managing operating systems and various software in a hi-tech field. Often, he would find other employees to perform these tasks, telling them he was too busy with other things. He remembers making excuses to himself as to why he was having difficulties at his job. He did not recognize the difficulties he was experiencing as dementia, as no one in his family had dementia and he knew little about it. He eventually retired from that job and took another job at a large home improvement store. He recounts forgetting where items were located in the store, handing customers the wrong parts, and misinterpreting what customers were describing they needed help with. He had trouble putting together simple projects; he could start but never finish them. He quit the job soon after.
P2 was employed in a service business for over 40 years. He was around 60 when he became aware that memory and cognitive issues were starting to interfere with his job. He had a familial history of dementia, so it was no surprise to him that he developed some form of cognitive impairment. Although his verbal skills were still good, his memories were fractured. Executive functioning was his biggest challenge and he really had to concentrate to get things done. He began to rely more on his assistant. It was obvious to everyone at work that he was struggling. Things at work were just not lining up, materials he was reading were not making sense. He would write down people's names, then forgot he wrote them down and repeatedly kept asking for their names. Filling out a form, a few pages down, he could not understand what was written. He would miss emails, and forget to submit forms. Finally, his employer made it clear that he was at risk of losing his job. In the end, he felt like he was a risk to his fiduciary responsibilities, so he applied for disability and left.
P3 was a manager for a large warehouse for years. He loved being productive and getting things done. He was friendly with co-workers but spent more time talking to everyone instead of doing his work. Eventually, he was placed on a PIP because of not actually being productive. However, after about six months, he was terminated from his job. This was the first that his wife learned he was having issues at work. The first symptoms appeared a couple of years before the original diagnosis. His wife remembers him coming home moody from work which he blamed on a long commute. They actually moved closer to his work, but the moodiness did not go away. He would not discuss what was going on at work, and both he and his wife attributed the moodiness to pressure and stress at work.
One interesting part of this very short study was that there was little engagement with the employer. No real in-depth discussions other than providing an assistant to one participant and no talk of accommodations or other support. Granted, the dementia diagnosis was not disclosed, nor was it known to the employees or employers at the time. Most organizations, especially larger ones, have Employee Assistance Programs (EAP), which are work-based intervention programs available to help employees with various personal issues. Curious if this resource is offered or if employees know to request it?
Stay tuned...more to come on this....
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