As a dementia caregiver and the President of WomenAgainstAlzheimer’s, I’ve seen firsthand the dramatic ways that Alzheimer’s disrupts women’s working lives and careers. Yet current conversations about economic justice for women often miss this crucial point. We must demand that businesses, policy-makers, and society discuss and address the growing economic burden of dementia caregiving for women across the US.
For example, a new paper from the Kaiser Family Foundation’s Women’s Health Survey examines how child care responsibilities drain women’s income; part of an important, long-running conversation about these topics. Yet there’s a greater need for research, attention, and action on Alzheimer’s caregiving, which is one of the fastest-growing economic pressures facing women.
I know this from my own experience. When my mom first showed signs of dementia, I was in the middle of an engaging career that I loved, raising three young sons, and living hundreds of miles away. I struggled to figure out what was wrong and manage her health long-distance, but the stress and anxiety were too intense. As she grew worse, I moved my mother closer to me, left my job, and began providing care almost 24/7.
This story is all-too-common for America’s daughters, wives, and women. Alzheimer’s turns caregivers’ lives and careers upside-down, often causing them to lose wages, benefits, savings, and other resources. American women already bear a $90-billion economic burden because of dementia; more than ¾ of the national total. Nearly half of this is due to indirect costs, such as lost productivity among caregivers. And unlike the gender pay gap or child care, this economic burden is set to surge in the years ahead.
Just consider the statistics:
- Women are twice as likely to be dementia caregivers. 63% of unpaid Alzheimer’s and dementia caregivers in the US are women. This means that women bear the vast majority of the costs of dementia, as well as its health, emotional, and social impacts.
- 11.2 million American women will provide informal dementia care by 2040. According to the Milken Institute’s report, The Price Women Pay for Dementia, the number of American women providing informal dementia care will roughly double from the current total of 5.8 million by 2040.
- 60% of women dementia caregivers are employed, and 19% have to leave because of caregiving. The burden of caregiving often causes women to miss work, take a leave of absence, or drop out of the workforce altogether – often losing hundreds of thousands of dollars in missed wages and benefits.
- Dementia’s impact on American women causes $43.7 billion in absenteeism and presenteeism each year – 6x the impact on men. Dementia’s total impact on women’s productivity, including missed work and performance at work, is a staggering $43.7 billion. This is six times the impact on men, and it accounts for nearly half of the total $90 billion cost of dementia for women in the US.
- Research indicates that older people of color are up to 2x more likely than older whites to develop dementia. And the cause isn’t strictly genetic. Several research teams have presented evidence that stress, often caused by poverty and disadvantage, are strongly associated with impaired cognition later in life.
As American women, we must raise our voices to drive both short- and long-term solutions to these problems – making them a primary issue of economic justice for the 21st century. Starting immediately, we must overhaul social support, medical, and workplace systems to address and alleviate the disproportionate direct and indirect costs of dementia for women.
In the longer term, only a cure or prevention for Alzheimer’s will end this burden. We must push leaders in government, business, science, and research to prioritize developing effective treatments and approaches. This means more public funding for Alzheimer’s research, more sex-based studies, and more access to diagnosis, treatment, and clinical trials.
We won’t wait for slow or inadequate responses. We must raise Alzheimer’s as a critical issue in wider conversations about economic equality for women, and we must call for rapid, sustained solutions that help women to balance the demands of caregiving, while also driving progress towards a cure.
To achieve economic equality for women, we must beat Alzheimer’s.
Let’s join together to do both
Jill Lesser, President of WomenAgainstAlzheimer's