Janet S Benvenuti MS MBA, Elaine B Goodman MD, and Sachin H Jain MD MBA.
America is aging. By 2030, 72 million people age 65 and older will live in the United States and the number of >85 year olds will increase dramatically to 19 million by 2050. Though media attention has focused on the burgeoning health needs of our aging population, little attention has been given to the deleterious effects of the health problems of the aged on their adult children.
Families and communities will be strained by the increasing need to successfully manage the care of the aged with the burden of care falling most heavily on the family caregiver, who is often the elderly patient’s child. Family caregiving is an invisible killer, silently contributing to negative health outcomes for middle-aged patients and sky-rocketing costs of health care, both for their aging relatives and themselves. However, primary care physicians are neither given rigorous training in assessing for caregiver burden, nor are they necessarily aware of the resources available in the community. Most importantly they lack the luxury of adequate time to devote to routine implementation of lengthy survey screening tools. We posit that family caregivers are a high risk population at greater risk for a variety of illnesses, including mental health problems, and that they incur greater health care costs. We furthermore propose a rapid screening intervention that could easily identify which patients are at greatest risk and would benefit from further referrals or counseling.
Family caregivers, typically spouses or adult children, are often neither trained for nor prepared for the challenges that may arise abruptly, as with a stroke, or over time with advanced age, as a loved one manages chronic illnesses and the mild or severe disability that accompanies ill health. Family caregiving remains labor intensive for patients with advanced age or dementia who require coordination among health care providers and family members to optimize functionality and reduce injuries and preventable hospitalizations. The adverse impact of caregiving on health has been well documented. Chronic stress, such as that observed in family caregivers, increases a predisposition to autoimmune and inflammatory diseases, cardiovascular disease, diabetes and metabolic syndrome. Increased levels of anxiety and depression coupled with behavioral negatives such as increased drinking or eating may compound poor health outcomes for those who provide higher levels of caregiving support. One study found that caregivers experienced 63% greater mortality than non-caregiving peers (JAMA 1999). As may be expected given their increased risk for a variety of health issues, caregiving employees incur 8% higher health care costs than non-caregiving peers. Indirect costs of caregiving are high as well; $17-35 billion is lost per year in work absenteeism, and 60% of elders deplete all of their life savings paying for custodial care, subsequently relying on financial support from their adult children, extended family, or Medicaid.
Some have highlighted the need for physicians to expand an aged patient’s history and physical to include an assessment of the family caregiver, especially if that caregiver is an elderly spouse. However, more attention needs to be paid to the unique issues that face adult children, especially the designated son or daughter who may hold the health care power of attorney and is involved in managing the care of their aging loved one over time. Many of today’s estimated 55 million family caregivers are adult children in the sandwich years², juggling the needs of their aging parents and in-laws, often long-distance, while supporting their children and working outside the home. By assessing the degree of caregiving burden on these adult children and orienting them to the issues and dynamics of this stage in life, physicians can mitigate a decline in the health of their caregiving patients while simultaneously improving the care of their patients’ older family members. When attempting to identify those at highest risk for caregiver burden, it is important to know the demographics of our country’s caregivers. Today, two-thirds of unpaid family caregivers of a patient 50 years of age or older are working women, 48-53 years old, although notably half of Asian-American family caregivers are male. For some, the duration of care will be less than one year, but one third of elders will need support for 1-4 years and another third for five years or more. With family caregivers often supporting two sets of grandparents or more in blended families, a middle-aged patient may assume the role of a family caregiver for decades.
While physicians will likely be the first point of contact for caregivers and should be prepared to advise them on their increased health risks, the issues facing the middle-age patient go beyond the need for clinical advice. Exhibit 1 summarizes the eight categories of issues that impact family caregivers as they help older loved ones navigate the aging journey.
Legal matters must be addressed as elders prepare wills and determine who will hold a durable power of attorney and health care proxy should they be unable to make their own financial or medical decisions. Family caregivers are often involved with medical decisions as they help their older loved ones navigate the health care system, manage the arc of illness, adjust to new prescriptions or recover from surgery. While most elders want to age in place, housing changes often are required as a parent transitions to the old-old stage of life, with family caregivers evaluating options and moving their parents, a transition fraught with emotion. Caregiving becomes an increasing priority, as family caregivers tap friends and relatives and hire professional support for their parents, reversing roles in the parent-child relationship. Most family caregivers face financial strain, dipping into college and retirement funds to pay for their parents’ home care and out-of-pocket expenses. Tension among siblings may escalate as adult lives are interrupted by the increasing demands of an ailing parent and end of life discussions, while needed, may be avoided out of discomfort or disagreement. Moreover, geographical separation only compounds the challenges of open communication and cooperation among family members.
Health care providers have a unique opportunity to orient patients to these issues and to help guide family caregivers to resources for support. However, adequate assistance with these issues clearly demands a multidisciplinary team including social workers, care coordinators, psychiatrists, and financial counselors. We propose that the role of the primary care physicians should be to identify patients at the highest risk for these issues, to refer these patients to the appropriate multidisciplinary providers for the various social issues as listed above, and to provide appropriate screening and treatment for the conditions that this particular population is at higher risk for. We outline a proposed plan for this screening approach below.
Screen middle-aged patients
All middle-aged patients (40-65) should be screened for caregiver’s burden. While the AMA’s caregiver’s self-assessment tool provides a quick screen, it is limited in its effectiveness for middle-aged family caregivers as it was not designed to assess people in the “sandwich years” whose responsibilities differ significantly from those of an aged spouse. Additionally, many primary care physicians may struggle to incorporate a multi-question survey into their visits with all of their patients >age 40. We propose that a single question, “Are you currently assisting in the care of an ill or aging family member,” be added either to the pre-visit intake questionnaire or the verbally obtained social history. A yes to this question could then prompt administration of a more comprehensive survey. In addition to the questions on the AMA caregiver’s self-assessment tool, a more comprehensive screening survey for middle-aged individuals would include:
- An assessment of dependency
- Are parents of advanced age? Living with dementia? Cancer?
- Are others (in-laws, older siblings, and children) dependent upon the caregiver?
- Are caregiving responsibilities shared by other family members?
- An assessment of medical knowledge and resources for parental care
- Knowledge about aging and chronic disease management
- Knowledge about prescription medication management
- Knowledge about fall prevention
- Knowledge about and the ability to find community resources
- An assessment of self-care practices
- Work burden: Full time, part time, flex time?
- Diet optimization
- Stress management practices
Screening can highlight the allostatic load on the family caregiver and triage those caregiving patients at most risk for health impairment. The highest-risk features that the physician should focus on include having a parent with dementia, having other dependents, and having an inflexible work schedule.
Direct patient to care coordination staffs
Today’s emphasis on more effective transitions of care provides an opportunity for primary care physicians to direct caregiving patients to care coordination units for support. Often caregiving patients are unaware that hospitals are staffed with social workers and registered nurses who can advise family caregivers about community resources when their loved ones are hospitalized. Guiding family caregivers to utilize these services can relieve some of the caregiving burden while improving the support for their older loved ones.
Encourage use of free support groups, Employee Assistance Programs, community resources
America has a plethora of resources for family caregivers, often underutilized. For example, most middle-aged family caregivers are unaware of the services available for them through local Councils on Aging nationwide. Many Employee Assistance Programs provide access to geriatric care managers who can advise family caregivers as well. Each major disease association, such as the Alzheimer’s Association, the Parkinson’s Foundation, and National Alliance for Mental Illness offer free support for families and more than 8 million websites regarding aging parents exist on-line. Encouraging family caregivers to tap into these resources can help them find ongoing support inexpensively.
Monitor family caregivers
Once acknowledged, the primary care physician should continue to monitor the caregiving burden on their patient, providing empathy and guidance through the aging journey with their older loved ones and mitigating the more negative health outcomes caused by chronic stress.
American health care is in a period of profound transformation, where there is more focus than ever on the consumer. As we focus more and more on the consumer of health care–we must also consider family caregivers and, indeed, caregiver health. By helping caregivers remain healthy and supported–we help ensure that our sickest and most needy patients continue to have access to the people who care for them most.
Janet Simpson Benvenuti, MS, MBA, is the author of Don’t Give Up on Me! Supporting Aging Parents Successfully and the founder of Circle of Life Partners, an advisory practice on aging.
Elaine Besancon Goodman, MD, is a Harvard-trained primary care physician. Her research, publications, and editorial work focus on patient safety and patient-centered care. She is currently pursuing an MBA at Harvard Business School with a focus on healthcare entrepreneurship and primary care innovation.
Sachin H. Jain, MD, MBA, is chief medical officer at CareMore Health System, an innovative health plan and care delivery system subsidiary of Anthem, Inc with $1.2B revenue and over 100,000 members. He is also the co-editor-in-chief of Healthcare: The Journal of Delivery Science and Innovation.