Dementia response for leaders

What is dementia?

Dementia as an overall term for a set of symptoms caused by disorders affecting the brain, as described by the Alzheimer’s Society of Canada. Symptoms may include difficulties with thinking, problem-solving, or language and memory loss.  It’s usually gradual, progressive, and incurable. Common types of dementia include Alzheimer’s disease and vascular dementias (often caused by strokes).  

In 2011, 747,000 Canadians were living with a cognitive impairment, including dementia according to the Alzheimer Society¹. Up to 10 percent of all cases of dementia start before age 65. The World Health Organization reports in, Dementia: A public health priority², that the risk for dementia doubles every five years after age 65. With the absence of mandatory retirement, it’s likely that workplaces will see an increase in employees who have dementia.

This is a workplace issue because some employees may struggle to cope with this disease while still trying to perform their work duties. This can especially be an issue for employees who don’t understand or remember they have this disease.

Stigma and dementia

Dementia is more common among older adults but can also affect younger people. The stigma related to dementia is often compounded with both ageism and stigma related to mental illness. Jokes such as "having a senior moment" may seem harmless but can be upsetting to those faced with this condition. Stigma can also manifest when we treat someone with impatience or as if they’re a nuisance. 

Increase awareness

Including dementia in mental health awareness education in the workplace can help increase understanding of the stages of dementia, improve the ability to respond supportively and effectively, and help affected employees identify their own symptoms earlier.

Early identification

You can reduce the likelihood of misinterpreting some of the early signs of dementia with improved awareness. Awareness can help reduce social isolation, stigma, or discrimination. Although memory loss is well known, some other early signs of dementia could include:

• Loss of initiative
• Changes in mood and behaviour
• Changes in personality
• Problems with abstract thinking
• Difficulty performing familiar tasks
• Poor judgment
• Disorientation of time and place
• Misplacing things

Being prepared and offering accommodation

Increased awareness and improved recognition of early warning signs can help workplaces be better prepared to deal with the progression of an employee’s dementia. While there will likely come a time when the employee is no longer able to carry out the essential duties of their job, employees in the early stages of dementia may be able to continue to work productively, with appropriate accommodations.

This may include the employer looking into services available from their benefits provider to help the employee be successful at work or to provide other support such as assistance with a disability claim.

The approaches described in Developing employee plans for leaders and Accommodation strategies can be helpful. Using these strategies, you can focus on planning for the future by asking the affected employee questions such as:

• What checkpoints can we put in place to help you stay on track?
• What should we be looking for that would indicate you are struggling?
• How do you want us to respond when there are performance problems so that you know we are being supportive?
• What would you think would be the signs that working is no longer an option for you?
• What kind of errors might you be concerned about making and how can we help manage these?
• What are the things that most stress or overwhelm you right now?
• Let’s check in every ___ days. What time works for you?

Termination and dementia

If the employee is unable to do the essential duties of the job, you may need to consider termination or early retirement options. It’s very important that the employer seek legal counsel to determine rights and responsibilities. You can also read more about Termination and layoff planning.

The following is based on the experience of one employer who was not sure how to respond, but acted with care and compassion for an employee whose dementia was progressing on the job.

Recognizing dementia in the workplace

"They were small signs, at first," said an employer. "My employee would forget the time of day, or lose his temper over a small issue, like forgetting to fill up the company car with gas."

The employee’s apartment was attached to the business, which allowed the employee to briefly "go home" during the workday. The employer noted: "He would often come downstairs to the office after a nap and think it was morning. Or he came prepared to work when he had the day off. The rest of the staff didn’t immediately see these actions as symptomatic of dementia because the employee would frequently use humour to deflect the situation, laughing off his mistakes."

The employer came to the realization that there was a bigger problem when clients began contacting him about the increasingly poor performance of the employee. After several of these conversations, the employer learned that clients had been covering for the employee by making excuses for him or doing some of his work. This was a longstanding employee, well-known and liked, and no one wanted to have him reprimanded or draw attention to his performance issues. Finally, when the employee’s friends came to the employer and began to ask if there were any problems, the employer realized his employee could be dealing with a form of dementia.

Taking action

The employer thought that there were some limitations under human rights legislation about what he was able to ask an employee having trouble. He said, "I didn’t think I could ask if he was experiencing a mental illness or suggest he get checked for dementia, but I was uncertain of my full rights and responsibilities," he said. The situation was complicated by the fact that the business owner was also the employee’s landlord, neighbour and friend.

A large part of this employee’s job had been driving, which raised safety and liability issues, not just for the employee but also for clients and the public. The client complaints finally convinced the employer to not allow the employee to drive. The employee responded to this decision with intense frustration, followed by feelings of guilt. The employer remained firm but reassured the employee no one was mad at him or viewed this as a failure.

The employer tried to limit the tasks the employee had the most difficulty with such as dealing directly with clients. The employee was unable to consistently engage politely and calmly with clients. Alternate tasks were offered such as equipment maintenance or other duties that didn’t involve direct contact with clients.

These changes initially seemed positive, but the employee eventually became resentful and angry as he couldn’t understand why his regular tasks were being taken away from him. The employer was faced with the difficulty of explaining how the employee’s previous behaviour, such as getting lost on a delivery, or being abrupt and uncooperative with clients, was unacceptable. The employer stressed that these situations were not a comment on the employee’s value as a person.

The employer was able to stay in close contact with the employee’s family who by now had also recognized the issue. A year after symptoms first appeared the employee was formally tested for dementia by his doctor.

Upon diagnosis, the employee voluntarily brought his doctor’s reports to the employer and was open to discussing the information. "After reading through the reports and discussing them with the employee, it was clear that he didn’t understand what they said. The employee believed that as long as he took his medication he would get better," said the employer. "I had obviously not asked to see the reports, but when he brought them to me and was willing to disclose their contents, I realized that bigger changes would have to be made."

Addressing co-worker issues

The employer also needed to support connection between this employee and the rest of the close-knit staff. It eventually became clear to them that the employee was experiencing dementia. Without disclosing the doctor reports, the employer discussed with staff the best ways to help this employee. Some staff were unsure how to deal with their co-worker when he would uncharacteristically swear at them or become very angry. They reported that they felt hurt and uncomfortable. As time progressed, the employer could tell this employee’s behaviour was starting to be difficult for everyone, even though they generally showed willingness to be patient and compassionate.

The employer assured his staff that they could come to him if they ever felt frightened or thought that they were being threatened. He also advised them to use his name as a buffer if tense situations arose, and to suggest to the employee that he speak to the boss about any issues.

The employer’s thoughts

As the year continued, the business owner himself would feel frustrated. This employee had been a tenant, a neighbour, and a friend for many years. The burden increased when the employer realized the employee was having financial difficulty.

The employee was showing one of the characteristic symptoms of dementia: poor judgment. He began giving away his possessions, including returning his car to the dealership. While the employer was unsure what exactly the employee did with his money, he knew he was falling increasingly behind on his bills. With the employee unable to continue with his regular job description, and unwilling to perform what he viewed as menial tasks, the employer had to figure out how to manage the situation from a business perspective. He knew the employee was now a potential financial and safety liability and would eventually have to have his employment terminated.

Together with the employee’s family, a move to a retirement facility was suggested. The employee believed that they were all mad at him and trying to get rid of him. Both his family and his employer would reiterate that this was not the case. The employee finally made the move and was transitioned to a retirement facility closer to his family. The employer gave him a retirement party and the employee seemed happy to see everyone together. Almost a year later, even though the employee’s condition continues to worsen, staff are still in contact with the employee, visiting and calling regularly.

The employer reflects that the signs of dementia began with the employee’s irritability for almost a year before other symptoms were evident. He shares that to accommodate a person in this situation really depends on severity of the disease and what the employee discloses. The added difficulty with dementia as opposed to many mental illnesses is that you often can’t count on the employee getting better or regaining productivity.

His advice: "Adjust the employee’s responsibilities as much as possible and consult a legal professional to find out what the employee and employer rights are in a case like this." He also suggests awareness education for all staff so that everyone can learn to recognize the signs, increase their understanding, and gain strategies to respond effectively.

"Most people suffer silently with a dementia diagnosis instead of asking for help or realizing that they need it. We found ways to continue to show care for the employee, as we worked through this difficult situation."

Additional resources

Living with Dementia: Impact on Family and Friends

Some of the most common feelings families and caregivers experience are guilt, grief and loss, and anger. Rest assured that you are not alone if you find yourself feeling these, too. Information courtesy of the Alzheimer Society of Canada.

References

1. Alzheimer Society of Canada, Dementia numbers in Canada. 
2. World Health Organization, Dementia: A public health priority (2012) | PDF