THE EFFECT ON CAREGIVERS

A new report from the Alzheimer’s Association estimates the total unpaid labor of caregivers for Alzheimer’s patients at $340 billion. This includes the work of more than 11 million people.

While this number tells us that an impressive number of Americans are engaged in giving care for people with Alzheimer’s, it is also a reflection of a public health issue. The tasks considered in the estimate included helping with daily activities, such as bathing or dressing, assisting with transportation and communication, managing finances and legal affairs, helping with medical treatments and taking medications, and emotional support, among other roles.

About 83% of the time, these jobs are done by family members or other unpaid individuals. The estimate of the total cost of this unpaid labor does not include the effects on caregivers’ productivity at work or their ability to continue working, the cost of out of pocket expenses, or the costs of home modifications.

Two-thirds of the caregivers in the study were women, and the average time investment was about 30 hours per week. The researchers calculated the cost of paying minimum wage for all the hours recorded and based their economic estimate on that sum.

Beyond Economics

Caregivers expressed satisfaction with the work they did for their loved ones. Feelings of love and duty were the main reasons people gave for their choice to be caregivers, and most said that they found the experience rewarding. However, most also felt that they had no choice when it came to their roles as caregivers.

At the same time, caregiving for Alzheimer’s patients is stressful. Caregivers were more likely that the general population to report emotional, physical and financial problems. They were more likely to be diagnosed with depression and anxiety, too. Social isolation was also a common problem for the caregivers.

Helping Caregivers

The Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act was passed in 2018. It provided support for various forms of help for caregivers. However, the Alzheimer’s Association report suggests that more research is needed before strong conclusions can be drawn about solutions to the problems faced by caregivers.

From a public health standpoint, these problems are likely to become more severe going forward. A higher proportion of the population will be elderly and more people will have Alzheimer’s disease. At the same time, smaller families and more people without children will reduce the number of unpaid caregivers available. At this point, there is no plan to make sure that there will be sufficient caregivers available for the expected number of Alzheimer’s patients.

In 2020, the American Public Health Association (APHA) identified strengthening the dementia care workforce as a public health priority. They proposed a number of bold initiatives to support unpaid caregivers and to increase the number of professional direct care providers available. Without such actions, the nation could be facing severe problems in the future.

In some countries which are facing aging populations, including Japan and some Western European nations, robots are being developed to help with elder care. However, there are practical, financial, and even ethical quandaries involved in automating the care of Alzheimer’s patients. So far, this has not become a practical solution.

The Alzheimer’s Association has a 24/7 helpline for caregivers. The number is 800-272-3900.