Who takes care of the caregivers?

12.6.19

13 million men and women will be living with dementia in the United States in the next 20 years. After a diagnosis like dementia, the effects are felt by the friends and family members of the patient.

One of the most disruptive effects of dementia are the economic and emotional obligations that are thrust onto the caregivers. This role directly impacts the quality of life for millions of individuals, yet caregivers often don’t receive formal training or the support they need to carry out this full-time job.

According to a study in The Journal of the Alzheimer’s Association, 66% to 70% of these caregivers are family members worldwide and the Centers for Disease Control (CDC) found that each year in the United States more than 16 million people provide over 17 billion hours of unpaid care for family and friends with dementia.

In order to properly address this nationwide issue, the total economic impact must be recognized as a public health issue.

The economic strain on caregivers is made up primarily of lost wages when they miss work. Caregivers reduce their hours or quit their jobs to take care of a loved one amounting to hundreds of thousands of dollars in the U.S. alone with the total economic value reaching over $234 billion. This burden is typically carried by women.  Approximately two-thirds of dementia caregivers are women, and one-quarter of dementia caregivers are “sandwich generation” caregivers, caring not only for an aging parent, but also for a child.

While the solution to this issue of caring for the caregivers is not singular, there are steps we can take to alleviate some of the economic pressures. The first is mutually beneficial: early detection. As Kevin Matthews, Ph.D., a Health Geographer at the CDC shares, “An early assessment and diagnosis is key to planning for (the patient’s) health care needs, including long-term services and supports.” Early detection is valuable for the dementia patient as it allows for more accurate diagnosis and treatment plans, while also aiding the caregiver in allowing more time to plan.

Other solutions are more complicated and will require workplace or policy fixes. Employer subsidized caregiving leave would ease the economic strain and allow for more planning in the absence of the worker. AARP found that about half of employers provide policies that support the caregiving population, 53% offer flexible work hours/paid sick days, 32% offer paid family leave, 23% offer employee assistance programs and 22% allow telecommuting.

Changes in how future Social Security benefits are calculated would grant credibility to individuals who have left the formal workforce and have gaps in their work histories due to caregiving. Other policy options presented include, an income tax credit and payment for some hours of care provided. In 2019, a bipartisan measure known as the Credit for Caring Act of 2019, or S. 1443, was reintroduced in the U.S. Senate that would grant eligible caregivers up to $3,000 in tax credit.

As the U.S. plans for the increasing elderly population, the gap between the number of caregivers and the anticipated population of individuals requiring assistance must be addressed. To do this we need to ensure protections are in place at both the employer and federal level for these caregivers to guarantee proper care is possible.