Alzheimer's in the workplace: a double challenge

Alzheimer’s changing the face of the workplace
For a growing number of people in the workforce, the workday does not end when they punch out of their paying job. As our population ages, increasing numbers of people find themselves going to their “second job” as an unpaid caregiver for a loved one living with Alzheimer’s disease or another form of dementia.

Employers and employees alike are moving into uncharted territory as more and more individuals take on the dual role of breadwinner and care partner, and employers struggle to manage the changes in employees’ availability and productivity. 

Nationally, more than 11 million individuals are providing unpaid care for 6.7 million Americans living with dementia, according to the Alzheimer’s Association. In Colorado, over 160,000 people are caring for 76,000 loved ones living with the disease. Primarily family and friends, those caregivers are providing an average of 30 hours per week of unpaid care. In 2022, that amounted to 18 billion hours of care nationally that was valued at nearly $340 billion, equal to 14 times the total revenue of McDonald’s ($23.3 billion).

Combining a job and responsibilities at home
The real rub for many employees is when the demands of caring for a loved one with a progressive disease begins to conflict with or interfere with the paying job. There are implications for both the employer and the employee. 

Karen Burke understands both sides of that equation. As director of Human Resources for the City of Fort Collins, which employs 2,400 part- and full-time employees, she leads a large team of colleagues. But for more than 10 years, she and her husband supported Karen’s mother in providing care for Karen’s dad as his dementia progressed. That experience, she believes, has shaped her approach to helping other full-time employees balance their jobs and home life, and helping the City keep good workers.

“I understand so much more now,” said Burke. “I already knew what it was like to be a mother and raising kids while in the workforce, but I didn’t understand the stress and love that came with caring for a parent (while parenting her own kids ages 6 and 12). Some days I felt absolutely broke.”

The importance of being transparent
While the needs of the employer do not always coincide with the ability of the employee to perform while simultaneously caring for a loved one with dementia, Burke believes that the situation often can work, but it requires communication and flexibility. The first move must be made by the employee.

In Burke’s case, the first step was telling her new manager the challenges she had faced at her previous employer. When she was interviewing for her new position with the City, she decided to share what she thought the next few years would be like if she was hired.

“What I gave my leaders was transparency, and in the beginning it didn’t come quickly for me,” she said. My manager at the City’s response was: ‘I’ll be with you on this journey.’ These were wonderful conversations. I was seen as a whole person.”

The next step for Burke was to plan ahead as much as possible so that conflicts, such as doctor’s appointments for her father, could be anticipated. But she acknowledges that living in the same community as her parents made that situation work much more smoothly.

“If I had lived in a different state than my parents, I would have had a very different experience,” she said.

The value of flexibility for employers
In her role as a director, Burke said there are important reasons for the employer to be as flexible as it can to try to accommodate staff members wearing the dual hats of employee and family caregiver. However, it’s not a given that it can work.

“We learned during the (COVID) pandemic that many jobs we thought were essential to be performed on-site were not,” she said. That’s not always the case for ‘essential on-site’ workers such as police officers, bus operators and utility workers. “You can’t leave those jobs open,” she said. “We still have to meet the needs of a community.”

On the other hand, Burke is cognizant of the downsides of employee turnover.

“We must consider the cost (of turnover) to the organization,” she said. “If an employee can’t do the job, we have to recruit and train someone new and get them up to speed. Is it better to be creative…step back and see if we can make an accommodation? Looking at the cost of turnover can help free up a lot of ideas on how to resolve the situation.”

Burke noted that studies have shown that highly-engaged employees are more productive and profitable. A Forbes survey said that “happy employees are as much as 20% more productive in the workplace than unhappy employees.” For some organizations, the benefits go higher, as the survey showed that salespeople were 37% more productive, and even stock prices were higher.

That has encouraged her and the City to focus on flexibility to help employee/caregivers continue in both roles.
“Some good lessons came out of the COVID pandemic,” she said, “such as reduced work weeks and shifting to evening hours. This is where HR can lean in and help managers understand, because it’s likely that we’ve seen these challenges before. There can be things that have been done elsewhere that the manager hasn’t thought of.”

A creative approach by employers
A number of employers in Northern Colorado have come together to talk about the value of employee resource groups (ERGs), Burke said. In the case of the City of Fort Collins, she said that several ERGs have been formed with specific audiences in mind. The Caregivers’ Alliance allows for various groups to support one another such as single caregivers and new fathers. The “Caregivers Alliance” has an executive sponsor – in this case, the City’s CFO – who will bring issues raised in the ERGs to the attention of the city’s senior managers for resolution.

“You get great information from people who are living the experience,” Burke said. “Our goal is to look at how we can adjust policies to make them more friendly. What we’re working towards is a philosophy. Life only happens once.”

Caregiver stress statistics
The Alzheimer’s Association cites a number of statistics that illustrate how the physical and emotional stress of caregiving affects those who provide care while in the workforce:

1. Workplace attendance
   1. More than half of employed caregivers work full-time (56%), 16% work between 30 and 39 hours, and 25% work fewer than 30 hours a week. On average, employed caregivers work 34.7 hours a week. 
   2. 69% of working caregivers caring for a family member or friend report having to rearrange their work schedule, decrease their hours, or take an unpaid leave in order to meet their caregiving responsibilities. (AARP Public Policy Institute)
   3. 6 out of 10 (61%) caregivers experience at least one change in their employment due to caregiving such as cutting back work hours, taking a leave of absence, receiving a warning about performance/attendance, among others. (National Alliance for Caregiving and AARP - 2015)
   4. 17% of caregivers of people diagnosed with dementia quit their jobs either before or after assuming caregiving responsibilities. 54% arrive at their place of work late or leave early, 15% take a leave of absence. (Alzheimer’s Association – 2015 Alzheimer’s Disease Facts and Figures)
2. Productivity
   1. Caregiving has shown to reduce employee work productivity 18.5% and increase the likelihood of employees leaving the workplace. (Coughlin, J. – 2010)
3. Employer awareness/initiatives
   1. According to 2010 Pfizer-ReAct/Gallup poll of 2,805 caregivers, 28% of those caring for an aging parent, relative or friend report their employers are unaware of their caregiving status
   2. In 2017, the Business Group administered a quick survey on supports for caregivers. Fifty-four Business Group members responded to the survey, and 88% of respondents indicated that caregiving will become an increasingly important issue in the next five years
   3. Less than 10% indicated offering leave sharing (5%), access to respite care (8%), on-site support groups (8%), employee discounts (6%) and subsidies (2%) for elder/adult care
4. Employee health
   1. 74% are “somewhat concerned” to “very concerned” about maintaining their own health since becoming a caregiver
      1. 59% rated emotional stress of caregiving as high to very high, and the chronic stress of caregiving is associated with physiological changes that could increase the risk of developing chronic conditions. (Family Caregiver Alliance)
      2. The prevalence of suicide ideation (thinking about or making plans for suicide) in dementia caregivers with a mean age of 64 was 32% compared with 2.7% in U.S. adults age 56 and older
   2. Nearly half of caregivers took money from their savings or retirement fund (Based on a survey of more than 3,500 American caregivers of someone with dementia)

To learn more about information, educational programs and services offered by the Alzheimer’s Association at no charge, go to alz.org or call the Association’s free 24/7 Helpline at 800-272-3900.

Alzheimer's Association

The Alzheimer's Association leads the way to end Alzheimer's and all other dementia — by accelerating global research, driving risk reduction and early detection, and maximizing quality care and support. Our vision is a world without Alzheimer's and all other dementia.™ For more information, visit www.alz.org or call the 24/7 Helpline at 800.272.3900.