Labor of Love

After a fall in the shower left Mr. Johnson bruised, it became clear that his Parkinson’s disease had advanced to the point he could no longer safely live alone. But as a bachelor who lived far from family and whose mind remained sharp, he resisted outside help.

His physician, Dr. Ronald Adelman, co-chief of the Division of Geriatrics and Palliative Medicine, turned to what he refers to as his “secret weapon:” a compassionate, well-trained, paid caregiver. He recommended BabyLou Sian, a former nursing home employee, to Mr. Johnson (a pseudonym to protect the man’s privacy).

Dr. Adelman, who is also the Emilie Roy Corey Professor of Geriatrics and Gerontology, had met Sian about 15 years earlier through another elderly patient. At one of that patient’s appointments, Sian remembers Dr. Adelman telling her, “‘Just do what you’re doing, because she looks good, and she’s doing well.’” Sian cared for the patient until her death at 100; afterward, Dr. Adelman began sharing Sian’s name with patients who needed home-based care.

Caregivers, whether they are professionals like Sian or — more commonly — unpaid family members, provide everyday yet essential support for those with chronic, disabling conditions, most often older adults. After moving in with Mr. Johnson, for example, Sian did his laundry, helped him dress, changed his bed and helped him use the toilet, even leaving the door to her room open at night so she could hear if he attempted to go to the bathroom alone.

Caregivers’ assistance makes it possible for people like Mr. Johnson to continue living where they feel most comfortable, at home. Their work also has the potential to improve patients’ health. Research, for example, has found that under the right circumstances, including when they are better engaged in discharge planning, the involvement of family caregivers can reduce hospitalizations. And like their counterparts, paid caregivers not only help patients manage complex medical conditions, but also provide emotional connection crucial to well-being.

Sian played an indispensable role in Mr. Johnson’s medical care, preparing his meals and his medications, and accompanying him to his appointments, always careful to ask his permission before mentioning a concern about his health.

As a fellow geriatrician, Dr. Adelman’s co-chief of the Division of Geriatrics and Palliative Medicine, Dr. Mark Lachs, is acutely aware of the importance of caregivers to their patients’ health — as well as the toll caregiving can take. “Tens of millions of Americans are taking care of adult family members or friends without pay or fanfare. The reward for their devotion: social isolation, the loss of income, depression and stress-related medical illnesses. They have valuable insights into the life and health of their loved ones, but are seldom acknowledged or even identified as a caregiver,” says Dr. Lachs, who is also the Irene F. and I. Roy Psaty Distinguished Professor of Clinical Medicine. “That has to change, and we are starting to understand how we can impactfully innovate in this space to benefit both patients and their caregivers.”

Drs. Lachs and Adelman and other members of Weill Cornell’s new Program for the Study and Support of Caregivers want to see both family and professional caregivers receive the assistance and attention that reflects their importance to patients’ health. Drawing on funding from the Hearst Foundation, the program will focus on training caregivers and meeting their needs, while also seeking to better integrate them into the practice of medicine. Meanwhile, its faculty, who have a long history of research in this area, will continue developing innovative ways of supporting their labor.

“There has to be a close relationship between the caregiver and the health-care team, so we can provide the best medical care for the patient,” Dr. Lachs says. “An enagaged, educated and appeciated caregiver can mean the difference between aging in place or living in a nursing home.”

To strengthen these partnerships, the program will draw on research, education and changes in clinical practice, Dr. Lachs adds. “It integrates our existing expertise under one roof.”

An Immense and Growing Need

The need for caregivers, and their contribution to health care in the United States, is immense and will only grow as the population ages.

Most often, caregiving starts out in the family, when a relative takes on basic tasks, like managing finances or transportation. A 2020 report by the American Association of Retired Persons (AARP) estimated that nearly 48 million Americans provide unpaid assistance of some sort to adult relatives or friends. This number had increased by about 8 million as compared to five years earlier. Some experts have estimated these family caregivers provide over $500 billion in uncompensated care that would otherwise be borne by an already stressed health-care system.

In time, however, the recipient’s needs may increase, sometimes leading the family caregiver to seek outside help. Estimating the full number of paid caregivers, a category that includes home health and personal care workers as well as certified nurse’s assistants, is tricky. The U.S. Bureau of Labor Statistics counts more than 5 million, but this estimate does not include self-employed workers like Sian.

It’s a workforce that faces many challenges. Historically, caregivers are paid poorly, with home care workers earning an average of about $16/hour nationally. In addition, morale can be low and turnover high as many leave the field, potentially placing more burden on family caregivers.

In 2013, Martha Villanigro-Santiago left her career as an employment lawyer to care for her mother, Cecilia, who had been diagnosed with Alzheimer’s disease and cancer. When it became apparent that her mother needed more care than she could provide, Villanigro-Santiago and her younger sister placed Cecilia in a nursing home near them. (Cecilia is her middle name, her first name is being withheld to protect her privacy.)

The facility’s certified nursing assistants help Cecilia into bed, dress her and take her to the toilet. To supplement that care, Martha visits almost daily, while also working in trips to see her father in an assisted living facility nearby.

Every weeknight, she brings Cecilia clean laundry and a meal she prepared. She oversees her mother’s dinner and gets her settled in bed. One of Martha’s recent nights off was cut short when she learned that Cecilia had become agitated, an episode brought on by her Alzheimer’s. After finally getting her mother to sleep that night, Martha returned home tired, anxious and distressed from witnessing Cecilia’s deterioration.

“The emotional part of this process, it’s not like one and done. It’s constant, and it grows the more time passes,” she says. “We all know Alzheimer’s is a losing battle.”

‘Invisible Patients’

The psychological strain Villanigro-Santiago describes is common among caregivers. In the AARP survey, for example, 36 percent of unpaid caregivers said they experienced a high level of emotional stress. These caregivers may face other challenges, too.

Some, like Villanigro-Santiago, forego paid work. And their own physical health may suffer. Villanigro-Santiago stays on top of her parents’ medical care, keeping track of the details in notebooks she brings to each appointment. But she’s fallen behind on her own care, delaying her mammogram and other tests.

“Caregivers often neglect their own health, their own well-being and their own needs,” says Dr. Catherine Riffin, an associate professor of psychology in medicine and a member of the new caregiving program. Because problems with their own health may fall under the radar, caregivers are referred to as “invisible patients,” according to Dr. Riffin, who met Villanigro-Santiago when they worked together on a conference on family caregiving.

Research indicates that caring for someone with dementia places additional demands on caregivers, according to Dr. Sara Czaja, the Gladys and Roland Harriman Professor of Medicine and the program’s director.

As time goes on and dementia progresses, caregivers must assist with increasingly more complex tasks. Meanwhile, the person for whom they are caring can develop more serious behavioral and memory problems. “It could be a wife who’s caring for her husband of 40 years, and now the husband doesn’t recognize her,” Dr. Czaja says.

Dr. Riffin and Dr. Czaja have developed questionnaires intended to help clinicians support caregivers with common issues, including their emotional struggles. Dr. Riffin’s eight-question assessment covers the medical and logistical aspects of care — like managing medications or medical costs — and asks the caregiver if they need help coping with their feelings, worry or stress.

Dr. Czaja and her colleagues developed their assessment, which is tailored to the needs of caregivers of people with dementia, about 16 years ago as part of an NIH-funded project. It covers issues related to safety and explores the caregiver’s emotional state and the support they receive, if any, from others.

Dr. Czaja and Dr. Riffin hope to integrate both assessments into patient appointments at Weill Cornell Medicine’s outpatient geriatric clinic, The Center on Aging.

“By using these screening tools in the clinic, we can better understand what caregivers need, and direct them to resources that can help,” Dr. Czaja says. These could include, for example, a discussion of medications or a referral to the in-house social worker.

Part of the Medical Team

The results of the assessments could also guide the development of new resources for caregivers, notes Dr. Adelman. He envisions creating a program that encourages caregivers to form friendships with one another as well as “Caregiver 101” training, which could help caregivers with fundamental aspects of health such as hygiene and fall prevention. Other courses could touch on more specialized topics.

Such resources could address a common challenge facing caregivers, who may be expected to perform complex, high-stakes tasks with little to no prior training. The program’s faculty have already begun developing programs intended to better prepare them, which some research indicates could benefit both caregivers themselves and the patients they serve.

Dr. Riffin and her colleagues, for example, created a four-session program to help family caregivers better recognize pain in dementia patients, who cannot communicate what they are feeling. In a preliminary trial described in Innovation in Aging in 2023, the majority of caregivers who participated reported that the training helped them discern signs of pain and feel more able to share their observations with clinicians — both critical steps toward alleviating that suffering.

Likewise, paid caregivers may lack the training they need to feel confident in their work. To explore this issue, Dr. Madeline Sterling, an associate professor of medicine whose research focuses on paid caregivers and home health care, started with heart failure, a chronic condition which occurs when the heart no longer pumps enough blood.

In research published in the Journal of the American Heart Association in 2018, Dr. Sterling and her colleagues found that many aides who care for patients with heart failure lack formal training in this condition, which the aides described as unpredictable and frightening. What’s more, they reported being unable to reach their supervisors or the patients’ physicians when they needed guidance.

Sian has experienced a similar unease. As a former nursing home employee, she received some training in various conditions, including Parkinson’s. But when she began caring for Mr. Johnson years later, she felt “not 100% prepared.”

“I tried to do my best with some knowledge,” says Sian, who would welcome the prospect of learning more about her clients’ conditions.

Dr. Sterling, who will direct a division within the program focused on paid caregivers, is now leading a project funded by the National Heart, Lung, and Blood Institute that seeks to train paid caregivers in heart failure and use technology to connect them to clinical supervisors. In the study, conducted with partner VNS Health, caregivers receive a 90-minute online course on heart failure and an app that allows them to message a nurse with questions. Her team has completed the trial and is now analyzing the data.

If successful, this approach could reduce visits to the emergency room and otherwise benefit patients’ health. It could also offer a solution to the difficulties these workers face.

“When aides feel confident and supported, I suspect they enjoy their jobs more,” she says, noting the benefits could go beyond job satisfaction. “Why couldn’t an aide with additional training and disease-specific skills receive higher wages?

Despite the difficulties inherent in the job, some paid caregivers — like Sian — stick with it, client after client. For them, caregiving is a calling, Dr. Sterling says.

As she had for her previous clients, Sian cared for Mr. Johnson until his death. When asked about what it’s like caring for someone at the end of life, Sian tears up and laughs sadly at her own reaction. “It’s my passion, giving them the care that they need, the love,” she says.