Alzheimer’s and dementia is a growing area of concern for the workplace, with more than half a million Canadians currently living with dementia and the number expected to almost double to more than 900,000 by 2030, said Sharon Cohen, neurologist and medical director of the Toronto Memory Program, during Benefits Canada’s 2021 Chronic Disease at Work conference in late February.

Further, said Cohen, up to 80 per cent of individuals with Alzheimer’s begin their symptoms under the age of 65, which has major implications for employers. “I would like to demystify this disease and how it impacts the workplace because this is a huge, huge topic and of growing importance.”

Read: One in four Canadians taking on caregiving responsibilities: StatsCan

Alzheimer’s is a progressive and irreversible chronic disease that’s ultimately fatal. More than 6,000 Canadians die of Alzheimer’s ever year, making it the eighth leading cause of death in the country. While dementia — the decline of cognitive abilities that impacts someone’s capability to function independently — can be caused by many diseases, 80 per cent of cases are caused by Alzheimer’s.

The cost for both dementia and Alzheimer’s is substantial, Cohen said: in 2021, the disease will cost Canada $11.3 billion in health-care system and out-of-pocket expenses — a number five and a half times greater than the health-care and out-of-pocket expenses for individuals with other illnesses. Caregivers and family members spend about $4,600 per year out of pocket in care for individuals living with Alzheimer’s and dementia. They also spend about 26 hours a week on what Cohen called “informal” caregiving, such as supervising or hands-on caregiving. “There are many hidden costs in looking after individuals with dementia.”

One hidden cost, she said, was on caregivers’ mental and physical health. According to the Alzheimer’s Association, the emotional burden of caring for a patient with dementia is twice as high as caring for someone who has another illness. Caregiving for dementia patients is also associated with increased hypertension, heart disease and other physical health problems such as back strain and even trauma from being assaulted by their loved one as the disease progresses and they become more agitated.

Read: How to support working caregivers

Employers have a role to play in helping employees who are either living with dementia or caring for someone who is, Cohen said. Without adequate support from employers, she says both patients and caregivers may exit the workforce — and in the case of patients, earlier than they actually needed to, due to stigma or out of fear their disease could cause them to make mistakes and expose them to liability.

“We have a continued loss of skilled labour in all sectors of society,” she said. “This can be highly trained individuals, surgeons, chiefs of staff, dentists, lawyers and truck drivers, factory workers, clerks . . people [from all industries].”

For caregivers, who are estimated to make up 35 per cent of working Canadians, she noted professional opportunities decline as their loved one’s disease progresses, and they become more distracted, need to arrive late to work or leave early and pass up promotions.

Cohen recommended human resources managers, when dealing with an employee who is living with Alzheimer’s, treat the disease the same way they would any other brain disease. She suggested employers promote activities that support both mental and physical well-being for patients and their caregivers and update their benefits offering to accommodate the current and future needs of people with Alzheimer’s, especially as the menu of offerings for diagnosis and treatment is expected to increase in the coming years.

Read: The business case for supporting carers in the workplace

Employers can also help their employees with Alzheimer’s and dementia stay in the workforce longer by making accommodations specific to the person, Cohen pointed out. While one person with Alzheimer’s may find reducing noise and distraction in the office helps them perform better, she says another may appreciate adjustments to their phones or computers. “There are individual combinations that can make a big difference in this disease.”

For employees who are caregivers, Cohen said employers should emphasize connecting them with existing resources — either through their benefits plan or through other sources — that can help reduce the burden and make caregiving more manageable.

“We really need to increase awareness [and] reduce stigma, encourage people toward diagnosis and early identification. We want to offer accommodations,” she said. “This will go a long way . . . [toward] making sure we’re not underestimating the strain and psychological stress or challenges to patients and caregivers . . [or] underestimating the strengths of . . employees who could continue to work if they were provided appropriate accommodation.”

Read: How employers can help staff take care of aging parents