­Becoming a caregiver for a person living with dementia takes a toll on a person in many ways. One of the biggest challenges is that caregivers can be forced to reduce their work hours or lose their jobs in order to care for their loved one. 

“I just called and said, ‘Listen, I’m not coming back. I don’t know when I’m coming back,’” said Kimberly Kelly, who had to take time away from her job at a school district to become a dementia caregiver for her mother.

From the stress of needing to be around someone all the time, to the experiences one might miss out on because of their time caregiving, to watching someone close to you decline in health, the dementia caregiver role is an incredibly tough one to handle; with the loss of wages a caregiver may face, those other challenges may be amplified.

“We’re giving up thoughts of things,” Laurie VanTrieste, a dementia caregiver for her mother who has faced financial struggles, said. “Weddings and things like that ... for my own kids, giving up things for them that we would’ve liked. We make choices for people we love.”

Family caregiving is often an expensive endeavor between the costs of the direct patient care, accommodations that must be made in a home, and other financial opportunities that are missed out on. Money can be a major concern for a dementia caregiver. 

Caring for someone with dementia in the U.S. can cost upwards of $350,000 over the lifetime of that person, according to a 2020 report by the Alzheimer’s Association. Family caregivers are forced to pay a portion of this sum out of their pockets each year. A recent report from the AARP found that yearly out-of-pocket expenses for three-quarters of these caregivers averaged over $7,000 per year. 

“I think it’s sad,” VanTrieste said. “I think that people get more and more frustrated with people they care for when they are such a drain on them emotionally and financially.”

On top of health costs, family caregivers may need to make changes to their home in order to make it accessible for a person living with dementia, such as ramps, rails, or alarms. Since caregiving is often such a time-consuming role, a family may need to hire a professional at-home  aide for periods when they cannot be home. All these costs can add up for a family caregiver.

Paid leave can help some family caregivers survive financially when they cannot work. However, there are restrictions and requirements that must be met in order to get the time off. This limits the access to financial help that caregivers can get, even if they need it. 

 

VanTrieste, who also works at a school district, can use paid sick or personal days off when she needs to care for her mother or take her to appointments. It works at the moment, but an extended leave from work would not be financially feasible due to the limited amount of paid time off she has. VanTrieste is building toward a pension as her mother’s condition deteriorates and she requires more care.

“I’m fortunate to have that with the school district,” she said of the pension. “It is not a good time for me to think about having to take a long-term leave of absence.”

When Kelly took her indefinite leave from work, she also used her allotted days of paid time off. After those ran out, other school district employees were permitted to “donate” up to 20 days of their paid time off. Once that period was over, there was no more paid time off.

“Depending how many days you take, you may go out and then they become deduct days,” Kelly said. “You just do not get paid for that. It comes to where some paychecks, you just get partial paychecks. You don’t get much of a paycheck.”

An expansion of paid leave put into place by law could help alleviate some of the financial pressure in cases where a family member needs to care for a person living with dementia. President Joe Biden’s Build Back Better bill had proposed such an expansion of paid family leave in the United States, especially for lower-wage workers. This would guarantee paid leave for workers who are not currently afforded it, benefiting low-wage workers, Black and Latino workers who are given paid leave less often than white workers, and women who become caregivers at a higher rate than men do.

However, it appears as of early December 2021 that paid leave expansion is likely to be dropped from the bill as it reaches the Senate from the 

House of Representatives. With a majority in the Senate, the Democratic senators will finalize the bill before it passes. West Virginia Democrat Joe Manchin, whose vote would swing the tally in favor of the majority, opposes the inclusion of expanded paid leave.

An expansion of health care and in-home care for elderly people is expected to be in the bill as of now — with reluctance from Manchin that could be an obstacle — which could be of assistance to caregivers, but the lack of a boosted paid leave system would be a dis

appointment for caregivers. Supporters of the original bill have still been speaking out about the importance of paid leave.

“One of the most important planks in our proposal is paid leave,” Senate majority leader Chuck Schumer (D-NY) said Thursday. “We’re here to say that we are fighting very hard to get national comprehensive paid leave in the Build Back Better.”

Expanded paid leave could allow caregivers to have a flow of income to use on themselves and the person they are caring for, and also provide better quality of care for the person living with dementia. It could also help secure the financial status of caregivers in the long run, because they will know their jobs are still in place for whenever they are no longer serving as caregivers.

“The United States is one of the few first-world countries that don’t give you paid time off for things like that,” human resources professional Barbara Stoyell said. She expressed her support for an expansion of paid leave in conjunction with more accessible outside resources for care and flexibility in the workplace for caregivers.

Dementia caregivers put in extensive work to care for those in need. Despite this, caregivers are constantly struggling to pay for the people they are caring for and to make ends meet for themselves in numerous cases. New policy implemented to expand the financial support a caregiver’s employer provides could help stabilize the situation for many caregivers. A reliable income and job security reflecting the hours caregivers work could be a solution in lessening the financial burden they carry.