When a family member develops Alzheimer’s or dementia, it’s primarily women who take on the main caregiving role, and it often comes with significant financial and medical repercussions. In the United States, more than 60 percent of Alzheimer’s and dementia caregivers are women. More than a third are daughters caring for a parent. For women caregivers, daily life is a complex balancing act involving their loved one’s needs along with their own employment, interests, and spouses and/or children.
Employment does not affect whether or not women start caregiving; however, women who do start are more likely to reduce work hours or leave their employment in order to meet caregiving demands. Indeed, nearly 1 in 5 women caregivers leave their jobs when they start caregiving or because they cannot manage both.
For those who stay in the workforce, the impact can be felt in their career trajectory along with their salaries. Some reduce their work hours or switch to part-time jobs, which can decrease annual earnings or cause a loss of benefits including retirement plans and health insurance. This, combined with the gender wage gap and stress, compounds to decrease women’s career opportunities, advancement, and pay. The effects can be long-lasting, including for women who continue to work full-time, those re-entering the workforce after a loved one enters a care facility, women without higher education, and women of color.
The financial effects of caregiving can also be serious and may differ depending upon a woman’s age when she assumes this role. Overall, women who are family caregivers are 2.5 times more likely than non-caregivers to live in poverty and 5 times more likely to receive public assistance, such as Supplemental Security Income (SSI). For younger women, lower earnings at the start of their working lives or barriers to professional development that result from caregiving can create hurdles as they progress in their careers. They also may fall behind in establishing or supplementing retirement funds, endangering their long-term financial security. Women caregivers with children can see a ripple effect with their family’s household income, including their ability to build savings for emergencies and children’s education. And older women can feel the brunt of the expenses associated with caregiving, such as purchasing wheelchairs or making home modifications, while living on pensions or retirement savings. It is estimated that 15% of women caregivers 60-61 years of age live in poverty.
It’s estimated that up to 80 percent of dementia caregivers report very high levels of stress. Dementia family caregiver stress and burden are closely associated with care recipients’ behavioral problems such as aggressive behavior, the rate of cognitive decline, having a poor relationship with the care-recipient, and lack of social support. Caregiving for family members with dementia has been consistently associated with higher levels of psychological distress, depression, anxiety, and anger compared to non-caregiving or non-dementia caregiving. A lack of time, feeling too tired, or not having a back-up caregiver can cause women caregivers to pull back from social gatherings, exercise, and activities outside the home that they enjoy and can help manage stress.
Women of color who are caregivers for people with Alzheimer’s or dementia also feel the effects of institutional biases. The effects on their careers and income are exacerbated by wider pay gaps for Black ,Latina, Native Amerian, Filipina, Vietnamese, and Korean women as well as long-standing bias that devalue their contributions to the workforce. Racial inequities continue to impact them when they go home and assume their caretaker roles, particularly when they interact with health care systems. Half or more dementia caregivers of color say they have faced discrimination when navigating health care settings for their care recipient.
All caregivers, and especially women, may feel conflicted about their role, and that is completely normal. Women may be proud of the quality of care they provide, cherish the time and love dedicated to a loved one or as apart of a multi-generational household, and feel gratified that they delayed or avoided moving a family member to a care home. Yet, the economic, social, and emotional impacts of caregiving can be overwhelming. It is recommended that women caregivers for people with Alzheimer’s and dementia be aware of these effects, advocate for their needs, and take actions to nurture their own mental, physical, and financial well-being—including seeking out outside support as needed through their doctor, a support group, or trusted and certified financial advisor.
Here are some additional resources for women caregivers:
Signs of Caregiver Burnout and Strategies for Managing Stress
Options for Securing Pay or Paid Leave for Caregiving (U.S.)
ARARF’s Facebook Page with Tips and Discussions for Caregivers
Our Research-Based Alzheimer’s Caregiver Guide Email Series and Audio Series
Note: Article was most recently updated March 2021.