Meet Melanie. Melanie is the new face of caregivers today and her Brain Story is one of an outpouring of love with a lot of responsibility. She is a 42-year old work-from-home mother of two elementary school boys living in the suburbs of Westchester County, NY. Her husband commutes over an hour each way to his full-time IT job in Manhattan. Melanie’s job as a freelance public relations consultant gives her the flexibility to shuttle her children to activities and manage other household responsibilities, while still being able to contribute financially to her family. Melanie also represents the new face of caregiving, which encompasses family caregivers and loved ones who care for family members in their own homes.
Melanie helps her 83-year old father care for her 80-year old mother, who was diagnosed with Alzheimer’s and Parkinson’s nearly two years ago. Her parents live in an assisted living facility 15 minutes away, so Melanie sees them nearly every other day. Between managing her own household, PR career, cooking meals for her family and parents, as well as assisting her parents with various doctor appointments, errands, and other household tasks, Melanie spends the majority of her days taking care of others. She rarely has the time, energy, or motivation to exercise, get together with friends or partake in activities like the Cookbook Club that once gave her much enjoyment.
While Melanie manages all her responsibilities with ease, she is noticing the change in her mood and the darkening of her spirit. She may find joy in her caregiving role for both her own household and that of her parents, but there are times she feels depleted and doesn’t know how much more she can give.
Introducing the “Sandwich Generation”
Melanie’s Brain Story is very common, as so many other middle-aged Americans have found themselves in the “Sandwich Generation” – a generation of people who care for their aging parents while supporting their own children. Literally squeezed between two situations that pose their own challenges, this group of people is attending to senior parents with health or age-related issues, while still raising their own children, too young to care for themselves.
Dorothy Miller, an American social worker, created the term “Sandwich Generation” back in 1981, and was originally referencing younger women in their 30s-40s who were taking care of both their children and parents. This concept continues to be studied, as this demographic is dramatically growing in the U.S.
According to the US Census Bureau, the population is growing older. There are now over 50 million seniors, and thus, more Americans are finding themselves in a family caregiving role. An estimated 100 million people – 45 percent of the US population – are caring for a loved one. “The Sandwich Generation” accounts for about 47% of adults in their 40s and 50s who have a parent 65 or older and are also raising/supporting a young or grown child.
According to the Family Caregiver Alliance, “With the responsibility of providing care for multiple individuals of varying ages weighing on their shoulders, caregivers understandably feel overwhelmed, over-stressed and under-appreciated.”
Amy Goyer, AARP’s national family and caregiving expert, says, “We care for many layers of our family and friends (parents, children, grandchildren, grandparents, siblings, spouses, partners, neighbors, pets) while working, managing finances and households and caring for ourselves. Our lives would more accurately be described as a gigantic club sandwich — or perhaps a pressed sandwich, flattened by the pressure.”
A Few “Sandwich Generation” Stats
- Mostly middle-aged, or between the ages of 40-59
- 19% of the members are younger than 40, and 10% are age 60 and older
- Men and women are both members, although the caregivers are predominantly women
- Married adults are more likely than unmarried adults to be sandwiched between their children and parents
- More affluent adults, or those with annual household incomes of $100,000 or more, are more likely than less affluent adults to be in the sandwich generation
- Hispanics are the biggest ethnic population in the sandwich generation situation (31% of Hispanic adults have a parent age 65 or older and a dependent child, whereas approximately 24% of whites and 21% of blacks are sandwich generation caregivers)
- About one in seven middle-aged adults, or 15%, is providing financial support to both an aging parent and a child
The Face of Caregivers Today – A Broader Look at the Modern Caregiver
While the “Sandwich Generation” encompasses a part of the caregivers’ group, a recent study conducted by Cambia Health Solutions titled, “Wired for Care: The New Face of Caregiving in America”, the overall profile of today’s caregiver has also changed. They are younger, more digitally savvy, and juggling responsibilities between work and home, which often means putting key life events on hold.
This study sought to redefine what this modern caregiver looks like by exploring how caregiving responsibilities co-exist with personal and professional duties and desires.
Some Key Learnings From This Study
A few stats about the new face of caregivers in America:
- Average age: 42 with 36% being 18- to 34-year-olds
- 53% are women, 47% are men
- 62% married or living with their partner
- 54% of caregivers are employed full-time or part-time
- 58% have a child in the household
- Digitally savvy: 64% of caregivers use at least one digital tool to help manage their caregiving responsibilities
- On average, today’s caregiver spends 32 hours a week supporting a loved one
Struggles & Satisfaction of Today’s Caregivers
The video below showcases the day in the life of a caregiver:
The role most caregivers have in the U.S. is that of “informal caregiving,” which means individuals are not getting paid for the countless hours of care being put in. Studies show that if a price tag were attached to the hours put in by informal caregivers, the numbers would exceed a staggering $500 billion. If caregivers were replaced with skilled nursing care, the cost would jump to $642 billion annually.
Though each situation is unique, caregivers often feel:
- Ill-prepared for their responsibilities: Based on the Cambia research, when it comes to the “Care-Life Balance,” 76% of caregivers state that no one taught, prepared, or trained them to perform these tasks.
Close to half (46%) of caregivers are managing their responsibilities without any paid or unpaid help, often with little, if any, instruction or experience. Adult children or spouses are often called on to dress wounds, give injections, dispense multiple pills several times a day (nearly 46% of people ages 70-79 take at least five prescriptions a day!), or operate specialized medical equipment.
- Stressed and overwhelmed: Multigenerational caregivers experience high levels of stress, and many reports being pulled in many directions and simply don’t have enough time in the day to accomplish their multitude of responsibilities. Among all adults with at least one parent age 65 or older, over one-third say their parents or parents need help to handle their affairs and rely on them for emotional support.
“The Workplace Care-nundrum,” as coined by the Cambia study, highlights the “balancing act caregivers must make to perform at work, while not jeopardizing the care provided to a loved one.”
- Financial strain: There are often financial burdens put on caregivers as well. About one in five middle-aged adults have provided financial support to a parent aged 65 or older in the past year.
In a study conducted by the National Alliance for Caregiving/AARP, they found that 61% percent of working caregivers had to cut back or change their hours (arriving at work early or late), take a leave of absence, or turn down a promotion. The fallout is lost wages, health insurance, retirement savings, and Social Security, which will further exacerbate the financial strain that may arise from caregiving.
- Their needs are put on hold: Many caregivers may find that it’s harder to take care of themselves when they are caring for others. The Cambia study reports that 76% put an important event on hold, or sacrifice things such as hobbies, personal time, saving money, travel, exercise, or career advancement because of their caregiving responsibilities.
Caregivers are also more likely to put their own physical needs aside. Research shows that 45% of caregivers report chronic conditions, including heart disease, cancer, diabetes, and arthritis versus 24% for Non-caregivers. Caregivers are also more susceptible to depression and anxiety than non-caregivers.
Despite the challenges that being a caregiver can pose, according to the National Opinion Research Centre, eight in ten people reported their time as a caregiver to be a positive experience.
Studies show that caregivers generally report solid to high levels of happiness and satisfaction, and feel a great sense of self-worth, accomplishment, and joy by providing for their loved ones. Statistics also show that those in the “Sandwich Generation,” particularly those living under the same roof, foster closer family bonds between the generations.
“Ten years ago, I would not have guessed my mother would live with us. We just didn’t think about what was down the road. The experience is equal parts challenging and rewarding. On the one hand I am juggling work with the needs of both my mom and my kids, and it’s tough financially. On the flip side, my children are getting to know their grandma in a special way while I am getting to know my mom on a different, deeper level,” relayed an anonymous 41-year-old caregiver.
Implications of Caregiving
The video below offers a perspective on the challenges facing caregivers today and how we can support them.
Given the countless hours spent and growing demands placed on caregivers today, what does this mean for the rest of our society? What would happen if these invaluable human resources of care diminished as a result of the mental and physical challenges imposed by caregiving?
In Other Words, Who is Taking Care of the Caregivers?
In January 2018, Congress passed and signed the Recognize, Assist, Include, Support and Engage (RAISE) Family Caregivers Act, which required the U.S. Department of Health and Human Services to create and maintain a strategy to recognize and support the millions of Americans who serve as unpaid caregivers.
The RAISE Act aims to accomplish this by establishing a national family caregiving agenda and improving coordination across government programs that support caregivers and care recipients. Its goals include:
- Improving the collection and sharing of information on family caregiving, especially as it relates to promising practices and innovative models for care
- Better coordinating and assessing existing federal programs to recognize and support family caregivers, maximize their effectiveness, and avoid duplication
- Assisting and informing state and local efforts to support family caregivers
It is through initiatives like the RAISE Act and research such as the Cambia Health Solutions Study that bring to light the challenges faced by today’s caregivers and the need for support from the government, employers, etc.
Lending Our Support
Whether you or a loved one is a caregiver, we at United Brain Association understand the challenges that may arise. We know there are long days, frustrations, and sacrifices, but through your dedication and efforts, we also see the best in humanity. The act of caring for another is one of the most selfless acts we can commit to, and for this, we salute and support you. Please remember that the best thing you can do for yourself as a caregiver is to care for yourself just as intensely as you do your loved ones.
If you’d like to reach out to tell us your caregiver Brain Story, or would like to learn more about our upcoming or ongoing research projects, please visit our website, here. To learn how you can help fund promising life-changing research, please see the ways you can help by visiting our website, here.
You Are Not Alone
For you or a loved one to be diagnosed with a brain or mental health-related illness or disorder is overwhelming, and leads to a quest for support and answers to important questions. UBA has built a safe, caring and compassionate community for you to share your journey, connect with others in similar situations, learn about breakthroughs, and to simply find comfort.
Make a Donation, Make a Difference
We have a close relationship with researchers working on an array of brain and mental health-related issues and disorders. We keep abreast with cutting-edge research projects and fund those with the greatest insight and promise. Please donate generously today; help make a difference for your loved ones, now and in their future.
The United Brain Association – No Mind Left Behind