Julie Ramos first realized her husband’s forgetfulness was far more serious than she had previously suspected the day he and their then 6-year-old daughter got lost in Mexico City while walking in a familiar location near their relatives’ home. Ramos, who is using a pseudonym, ended up having to call the police to find her husband and daughter. At the time, Ramos didn’t know as much about dementia and how it would impact her American military veteran husband, James, also using a pseudonym, who was in his early 70s at the time. But over the last six years of her husband’s life, Ramos, who was then in her 40s, became her husband’s full-time caregiver while also being a de facto single mother to their daughter.
“I had no help,” Ramos told Prism. “It was hard. I used to dress him and cut his nails. My husband was aggressive sometimes [as a result of dementia, but] I felt like [caring for him] was my responsibility. It was part of my commitment when I married him.”
While the Ramos family’s incident in Mexico City and following caretaking experience happened in the 1990s, stories like hers are still common for many struggling to balance care for elderly relatives or those impacted with dementia while also raising children. In the U.S, there are an estimated 11 million unpaid family caregivers of patients with dementia, including Alzheimer’s disease, vascular dementia, Lewy Body Dementia, Parkinson’s-related dementia, HIV-associated dementia, and other forms of the disease. According to the National Institute on Aging, Alzheimer’s is defined as a brain disorder where individuals develop issues with memory and thinking skills; the medical condition worsens over time. When it comes to BIPOC, many are often diagnosed later in the disease’s progression due to lack of health care access, lack of knowledge, and stigma, which can make caregiving more of a challenge.
A difficult balance
“More than one-fourth of Alzheimer’s and dementia caregivers are ‘sandwich generation’ caregivers—caring for someone with dementia and a child or grandchild at the same time,” said Beth Kallmyer, MSW, and vice president of care and support for the Alzheimer’s Association. According to the Alzheimer’s Association, over two out of three caregivers are women, and nearly 50% look after at least one parent or parent-in-law. Nearly one-third of Alzheimer’s and other dementia caregivers typically provide 20 or more hours of care per week, which can include personal care like bathing, feeding, and toileting. It can also include household tasks like shopping, cleaning, managing finances, and other routine tasks like medical appointments.
The day-to-day juggling act for sandwich generation caregivers can be difficult, especially for those from communities of color. Some experts say institutional and structural racism can lead to back-to-back crises that can overwhelm all of the members of a BIPOC family. For example, in 2017, South Carolina police tased an 86-year-old Black man with dementia, Albert Chatfield, which led to serious injuries. Chatfield never fully recovered. and his family was traumatized.
When it comes to caregivers, the challenge of providing 24/7 care can be overwhelming, particularly if the dementia diagnosis or disease progression came as a surprise. There is no current cure for Alzheimer’s, nor is there one set path for how quickly the disease might progress. An individual with Alzheimer’s or other forms of dementia might live with the condition for years or even decades. In Ramos’ case, her husband lived for six years after diagnosis.
Ramos met her American husband in her early 20s in Mexico. Ramos recalled the two had many happy times together, first living in Texas and then dividing their time between Mexico and the U.S. Ramos ultimately decided to bring her husband back to the U.S. so he could get appropriate medical treatment.
But finding culturally competent care isn’t always easy. Half of Black caregivers say they have experienced discrimination while trying to get medical care or secure health insurance for their loved one with dementia, and nine out of 10 Hispanic and Latinx caregivers say it’s important for dementia providers and medical professionals to understand their ethnic, racial, and language-based experiences and needs when providing care. For example, caregivers who don’t speak English as a first language may not have access to translation services during appointments or bilingual screening tools. Ramos experienced those language barriers firsthand during her years in Texas. As a Mexican immigrant, she recalls discriminatory and unkind behavior from both white and Mexican-American medical professionals and others while navigating her husband’s dementia-related medical care.
As her husband’s disease progressed, Ramos decided to take care of her husband at home—putting her husband in a nursing home was not an option for her. Ramos remembers how their young daughter cried sometimes while emotionally processing the fact that her formerly doting father was unable to have the same relationship as before he got sick. Ramos said she and her daughter became very close during those years. After her husband passed away, “It was just the two of us,” she said.
She continued, “I had a beautiful marriage. I took care of my husband until the last minute. Just because he lost [his] memory and they don’t remember you, that doesn’t mean that you don’t remember what he did for you.”
In search of support
BIPOC caregivers are not only juggling minor children and senior parents, they are often dealing with the demands of paid employment as well. According to the Alzheimer’s Foundation’s survey, some 57% of employed family caregivers had to go to work late, leave work early, or take time off to deal with caregiving duties, like doctor’s appointments and caretaking responsibilities. Eighteen percent of caregivers stopped working full time, transitioning to a part-time schedule. More than one in six family caregivers stopped working entirely, and 6% took an early retirement to care for their loved one.
“The reality is that one person cannot do this on their own. Have [your loved one] attend an adult day center or a center that provides dementia-specific care with trained staff. That can be helpful for a sandwich caregiver,” said Kallmyer.
BIPOC Alzheimer’s sandwich generation caregivers may also face mental health concerns as a result of feeling isolated and under pressure from their responsibilities. Among dementia caregivers regardless of race, nearly one in four have experienced depression, a rate more than 55% higher than non-caregivers, and many feel they don’t have the time to join a caregivers support group or get mental health support.
Many family caregivers are unpleasantly surprised to find out that neither Medicare nor Medicaid covers full-time live-in home-based dementia care. If a senior citizen with dementia has any financial assets—like a house over a state’s equity limit or a 401K—they cannot easily qualify for Medicaid until all financial reserves have been depleted or spent. The financial burden on BIPOC caregivers can be devastating.
Gaps in support mean that caregivers want and need more access to services and assistance in financial, legal, and logistical issues regarding dementia caregiving responsibilities. Unfortunately, caregivers of color are more likely to experience multiple back-to-back crises relating to dementia caregiving without getting expert advice and help. “It’s a balancing act,” said Kallmyer.
She and others on the team run the 24/7 free national helpline for individuals with dementia and caregivers. “We encourage people to call that helpline wherever they are. The social workers and counselors can help a caregiver find resources and problem solve at 4 a.m. if need be,” she said. Additionally, local chapters of Alzheimer’s organizations provide in-person and phone support, workshops, online Webinars, and more.
Impact on the family unit, including children
While Marcia Avellaneda Henne, program manager at CaringKind’s Memory Advocate Peers program (MAP) in New York, has assisted, counseled, and trained countless family dementia caregivers throughout her professional career, the issue of dementia is a deeply personal one. As the Colombian-American daughter of the late Maria Clara Avellaneda, Henne belonged to a large loving immigrant family that spent years living and traveling in the Middle East due to their father’s job.
As her mother was one of 14 siblings, there was a lot of love from a large Catholic extended family in the U.S., Colombia, and elsewhere. Henne said the family maintained ties to a home base of the New York City metro area where she currently lives. But at the same time, Henne said, growing up there was a lot of pressure to keep up appearances and not air personal information, sometimes known as “airing dirty laundry.” Their mother was the family’s beloved matriarch who took care of everyone with cooking, laundry, and a wide range of other homemaking tasks. It’s possible, Henne said, that this love, respect, and desire to protect their mother directly contributed to a collective family denial in the early years of their mother’s dementia. Although the close-knit family realized that their mother’s personality had changed by 2000, it still took a few years to get an official diagnosis.
“In Spanish, the word demented—el demente—is very disrespectful, it literally means you are out of your mind, it’s not a term you would use toward your mother or any loved one,” said Henne. “La demencia is the correct term. Whether in Spanish or English, at home or in casual conversation, it is encouraged to use the correct terminology, whether it is Alzheimer’s disease, dementia, or MCI (mild cognitive impairment).”
Henne and her three older sisters all aimed to split the caretaking responsibilities for their mother, who eventually came to live with Henne after previously living with another sister. It was a huge adjustment for the entire family. Her teen children knew their grandmother was sick, but they didn’t fully understand how much assistance their grandmother now needed. It was challenging for Henne’s teens to understand how and why their mother would handle certain situations, like when their grandmother would often repeatedly ask questions about her own late mother and other relatives who had passed away. Henne’s teens also questioned why Henne asked her mother to refold laundry that had already been folded again and again. The reason? Their grandmother had always been a stickler for providing wrinkle-free clean clothes for her children and grandchildren.
One day, soon after her mother started living with her, Henne experienced what she calls “the day from hell.” On that day, Henne was stressed by the demands of her day and her three teens were bickering. Despite not being a practiced baker, Henne decided to honor her mother’s culinary and homemaking skills by baking a cake for the family. When the cake was finished, Henne rushed to get to the oven before her mother, and in her rush she forgot to use an oven mitt. She burned her hands badly, and the baking pan and cake dropped on the floor. Henne’s mother immediately got upset and wanted to help, forcing Henne to fight through excruciating pain to give verbal directions to her teens while making sure her mother stayed safely away from the oven and hot pan.
Because Henne’s mother was prone to wandering and could not be left home by herself, a trip to the emergency room was out of the question, so Henne made do with bags of ice and massive amounts of Neosporin.
“It was a really tough 24 hours,” Henne said, noting that she can laugh about the situation now. The next day, after one of her older sisters drove up from New Jersey to take care of their mother, medical professionals were shocked that Henne went for 24 hours without professional treatment, since her burns were significant. Henne’s teens are now young adults and remember the challenges of that time. Henne said her young adult children talk about their grandmother’s legacy often, while also appreciating all of the work that Henne and their maternal aunts put in as family caregivers.
“When it comes to being a caregiver of a person with dementia, it often can feel like you are falling, it feels like a black hole sometimes. It is scary, it is lonely, it takes over your life,” said Henne. “It may be a cliche, but there is light—a positive light—at the end of the tunnel.
“As a caregiving family, we did what we could at that time. As a daughter, I think I always wished I could have done more. I now know that I did the best I could do for my mother. Her legacy and her love lives in each of us and we continue to pass that on to those that need our help.”
According to a CaringKind training guide, caregivers cannot be perfect all of the time and should not hold themselves to unrealistic standards. Recommendations that every caregiver should practice every day are to know your boundaries; know your triggers to avoid stressful situations; and find ways to care for yourself, especially if you are the primary caregiver. Ultimately, BIPOC Alzheimer’s sandwich generation caregivers are hopeful for future policy changes, increased health insurance, and coverage; funding for caregiver resources, training, and support; and above all a future cure to prevent Alzheimer’s and other dementia in its tracks.