Ann is a successful attorney practicing elder law. Her interest in this specialty grew in part from her personal experience in dealing with her mother’s rapid decline due to early onset dementia. There were other siblings. But Ann was the youngest, and so her mother moved in with her. Several years later, an aunt began to show similar signs of Alzheimer’s. Family members suggested Ann could take her in, too, “because you know how.”
Jean made regular site visits to an adult day program. One of the participants lived with multiple chronic health conditions in addition to his dementia. He took a lot of medications and needed a lot of treatments. Occasionally, this meant a trip to the hospital or a short stay for rehab, followed by a return home. There was a rhythm to it. He would have an episode, get treatment, then rally and return home to his routine. Jean had not seen him at the day program for several weeks and asked about him. “His daughter just couldn’t do it anymore.” She had given up being able to care for him at home.
One morning on my way into the office, I encountered a middle-aged couple and their adult child in the lobby looking at the building directory. It was a few minutes before 8:00 a.m. and this was their third attempt to find the location of the therapist’s office they had been referred to. Their son, who was on the autism spectrum, was becoming agitated and was acting out. He towered over both parents. They looked exhausted. I invited them upstairs to see if we could help find out where they needed to be.
November is National Caregiver Month. This year’s theme, “#CaregiverAnd”, encourages family caregivers to identify other roles in their lives: as students, as professionals, as parents. Judging from my Twitter feed, many people have responded, with hashtags about aspects of their lives, and to share a passion, a hobby or an achievement. They are more than their roles as caregivers.
When we talk about “family caregivers” at Benjamin Rose, we mean the “informal” and unpaid supporters who provide care for their loved ones. Family caregivers pay bills, run errands, schedule appointments and provide direct care for their loved ones. They serve as advocates, translators, nurses and counselors. AARP estimates the value of this uncompensated long-term care at more than $470 billion annually. That’s more than the total outlay of payments by Medicare, Medicaid, charity care and out-of-pocket expenses combined. Effective community-based long-term care relies on this network of these informal supports. But they are often overlooked in discussions about health, treatment, chronic disease and long-term care planning. Why?
An invisible population
Family caregivers are invisible, in part, because they often do not identify themselves as caregivers. They are dutiful parents, loving children or devoted partners. Caregivers assume their roles gradually. It may begin with helping with a few household chores or running errands. Over time, the responsibility may increase, as their loved ones experience declines in health or cognition. Or demands may grow as a child with developmental disabilities grows to adulthood and outgrows the supports they may have received from special needs programs at school. Other times, the responsibilities come quickly, when an accident or illness leads to life-altering changes for their loved ones. Whether gradually over time, or in an instant, the caregivers’ responsibilities are not always immediately evident to others, or even the caregivers themselves.
Caregivers’ other roles and responsibilities do not end when caregiving duties increase. Working mothers and fathers are part of the sandwich generation, caring for their own children while also taking care of an older parent or grandparent. Financial and career responsibilities continue. The family dynamics of sibling rivalry or parent and child relations don’t vanish when caregiving responsibilities enter the picture. One of the reasons why the #caregiverand… resonates is that it acknowledges that caregivers are people, too.
Caregivers may not recognize themselves, but they are also invisible or ignored by health care providers and payers. Working with family caregivers, one often will hear a variation on this story: “I went with Dad for his test results. The doctor came in and told us that Dad has cancer/Parkinson’s/dementia. Then the doctor left the room.” A diagnosis of a chronic health condition introduces a new, and likely lifelong, relationship between a patient, the family and the health care system. But far too often conversations leave the patient and caregiver feeling alone. I heard the wife of a person living with dementia describe it as “diagnose and adios.” A hospital stay generally incudes a discussion of discharge planning, but sometimes little attention is given to the person’s home environment or the caregiver’s ability to assist with a plan of care. Instructions for wound care, medication or home therapy is a cursory review of a printed set of instructions. There is no assessment of the caregiver’s ability to provide care, nor of the supports required to meet the caregiver’s own needs.
Of course, there are examples of caregiver support, and person-centered treatment that work. Atul Gawande’s Being Mortal provides many examples of how the needs of the whole person, and their family caregivers, can be addressed, and lead to better health outcomes. Tia Powell and Louise Aronson have also written about how health care professionals can consider the needs of patients as people, including the relationships of family and friends.
For more than 60 years, Benjamin Rose Institute on Aging has focused on the needs of family caregivers. Our Center for Research and Education developed evidence-based supports for the family caregivers, including BRI Care Consultation™ and SHARE for Dementia. We partner with many organizations to deliver these high-quality programs across the country. And, we offer a variety of resources, articles and tips for families on www.benrose.org
During the pandemic, we ramped up efforts to direct people to resources such as WeCare. . .Because You Do, which offers telephone and remote support to caregivers, and Best Practices Caregiving, a partnership with Family Caregiver Alliance to support the dissemination and adoption of caregiver support models in health systems and health plans. This is all part of our commitment to caregivers, and our appreciation for the critical role they play in our society.
This past year, Mark Lee shared his experience as a caregiver for his parents as a series of guest blogs on our website. Mark has a knack for telling a story, and he has a great story to tell.
Maybe you have a story to share as well. Giving voice to your experience helps inform others, and helps make caregivers visible. There are many examples of being a “caregiver and. . .” Your story helps bring awareness of the importance of family caregivers, and helps others realize they are not alone.
If you want to read more about caregivers and their experiences with health care , I recommend:
Being Mortal, Atul Gawande
Dementia Reimagined, Tia Powell
Elderhood, Louise Aronson
Welcome to Wherever We Are, Deborah J. Cohan