Supporting America's modern heroes
Halima Amjad, MD, MPH, recalls a time when her father wandered into the kitchen as her mother prepared dinner, snatched a piece of raw chicken and put it in his mouth. Her mother, and his wife of 37 years, yelled and ran toward him, ignoring the pain in her arthritic knee, and quickly yanked the chicken out of his mouth. The now-retired dentist was living with frontotemporal dementia.

Halima Amjad, MD, MPH, recalls a time when her father wandered into the kitchen as her mother prepared dinner, snatched a piece of raw chicken and put it in his mouth. Her mother, and his wife of 37 years, yelled and ran toward him, ignoring the pain in her arthritic knee, and quickly yanked the chicken out of his mouth. The now-retired dentist was living with frontotemporal dementia.

At the time of her father’s diagnosis in his late 50s, Amjad was about to graduate medical school. While she had seen many cases of caregiving and too many cases of dementia, her father’s experience is the only case she had experienced so completely. “As a doctor you learn about dementia, but you don’t expect it to occur in your family, especially that early,” says Amjad, now an assistant professor of medicine and geriatrician at the Johns Hopkins University School of Medicine.

Amjad, her sister and brother all help take care of their father, but the brunt of the care falls to their mother.

The John A. Hartford Foundation The John A. Hartford Foundation is a private, nonpartisan philanthropy dedicated to improving the care of older adults. Since 1982, they have awarded $565 million in grants to partner organizations. Learn More

“Seeing my mom go from happy-go-lucky to having a baseline level of stress isn’t easy,” Amjad says. “At this point, the disease is quite advanced. We have to feed and clean him. My mom is basically his brain. He can’t talk anymore. She feels lonely. As children, it’s hard to watch my mom struggle and it’s hard for us to figure out where we belong in all of this. Mom wants us to go out and build our careers and families. But we also have to balance her health. It’s physically and mentally exhausting having to take care of someone with dementia.”

“ I have been brought to my knees in tears trying to get my mom to the right provider, understanding a medication change, doing 3 a.m. internet research because the diagnosis she received did not align with what I was seeing day in and day out. ” Rita Choula, Senior Advisor, AARP Public Policy Institute





Taking care of a loved one and facing the demands of dementia is no simple task. Help can be hard to come by. Sometimes, where one lives determines access to programs and services, admits Rita Choula, senior advisor with the AARP Public Policy Institute. “Unfortunately, some zip codes have access to more or better programs than others,” she says.

18 M Americans are caregivers

of older adults

Choula’s 16-year experience caregiving for her mother and grandmother has been a bit of an uphill battle, even for someone whose work revolves around promoting the development of policies to address our common need for economic security, health care and quality of life. “It can be difficult for a family caregiver to navigate the infinite internet universe to track down what they need,” Choula says. “One of the most frustrating things for me was going into a local aging office and being handed a 50-plus page book of resources for things I didn’t know I needed.”

Still, Amjad and Choula’s stories are hardly unique. Most Americans will become caregivers at some point in their lives. According to a 2016 study conducted by the National Academies of Sciences, Engineering and Medicine, an estimated 18 million friends and family members provide care for an older person, whether it is help with daily activities like bathing and eating, medication management or other types of medical tasks and wound care. That same study, which was done in partnership with The John A. Hartford Foundation and other organizations, also found that 36 percent of caregivers reported moderate to high levels of financial strain.

36 percent of caregivers experience moderate-to-high levels of financial strain





Yet, while they’re vital to our health system and represent a large portion of our population, family caregivers are often overlooked.

Through grant-making and partnerships with mission-aligned organizations like AARP, The John A. Hartford Foundation, an organization dedicated to improving care for older adults, is committed to transforming our health care system, long-term services and other support systems to meet the needs of this 18 million-member caregiving workforce. This has included funding major national studies, programs that are linking family caregivers to support and creative efforts to raise public attention to the role of family caregivers such as a multi-media window display at New York’s Rockefeller Center.

“One of the most exciting results of the 2016 study for us has been the ability to use it as a focal point to bring together a network of leaders interested in supporting the vital role caregivers play in a variety of ways across differing settings, geographic locations and populations,” says Rani Snyder, program director with The John A. Hartford Foundation.

The high societal cost of family caregiving

Few family caregivers can or would put a price tag on what it means to care for their loved one during their time of need. Either through a sense of obligation or few available options, families cobble together finances, time and space in their homes without necessarily realizing the inherent costs. Beyond the costs of care, losses in lifetime earnings for caregivers age 50 and up amount, on average, to over $300,000, according to AARP.

Many caregivers complain that while it’s nice to see companies touting flextime as company policy, it’s often frowned upon in practice as these employees manage everything from doctor appointments to picking up prescriptions. According to research conducted by AARP and the nonprofit Respect A Caregiver’s Time (ReACT), employers offering benefits to support family caregivers can expect a return of between $1.70 and $4.34 for every dollar invested in flextime. And every dollar invested in a telecommuting option saw a return of between $2.46 and $4.45, the report revealed. Family-friendly policies have been typically reserved for new parents, but these can also be the cornerstone of human resources support for employees providing care to loved ones affected by dementia.