Caregivers: Partners in Improving Care for Older Adults
By Robert Wood Johnson Foundation Physician Faculty Scholar Cynthia M. Boyd, MD, MPH and Jennifer L. Wolff, PhD
With increasing numbers of Americans living to older ages, it is no surprise that a growing number are challenged by complex medical needs and disability. Being able to perform activities of daily living (bathing, dressing, etc.) and instrumental activities of daily living (shopping, managing medicines, housework, etc.) make a great difference to independence, quality of life, and peace of mind.
Although these functional measures matter tremendously, older adults also often struggle with managing multiple chronic conditions. Older adults’ ability to navigate our fragmented health care system, to process the complex medical information needed to inform their health care decisions, and to carry out a treatment plan that often includes multiple medication and lifestyle changes are not reflected by ADLs/IADLs (activities of daily living/instrumental activities of daily living), yet are essential to the quality and outcomes of their health care.
Family and friends often assist with medical tasks and communicate with health care providers, and yet the health system is not well equipped to support patients in the broader context of their helping networks. For example, by some definitions, the daughter who stops by everyday to check morning blood sugar, takes off of work three times per month to bring her dad to get blood drawn for blood thinner monitoring and accompany him to various routine appointments would not be considered a caregiver. (Wolff J, Kasper J. Gerontologist. 2006, Giovannetti E, Wolff J. Milbank Quarterly 2010) Yet, the ability of health care providers to care for the dad, including both making health care decisions and implementing his treatment plan, is very dependent on the daughter’s willingness and ability to help.
So this month, we’d like to honor the many “caregivers” who are so critical to caring for patients with complex health care needs, but whose roles and contributions are too often under-recognized. Treatment burden – the aggregate effects of everything people with multiple chronic conditions are asked to do for their health – affects patients’ quality of life, quality of care, and likely their adherence and health care decision-making. Caregivers play a crucial role in helping older adults with multiple chronic conditions manage their health-related tasks, and they may also experience difficulty as a result of doing so.
Recent work from our group (Giovannetti et al, JGIM 2011) described a scale of health care task difficulty which measures caregivers’ self-reported difficulty in assisting older adults with eight health care tasks, including taking medication, visiting health care providers, and managing medical bills. Among caregivers of older adults with multiple chronic conditions, being less confident in their ability was associated with a greater likelihood of reporting difficulty helping with health care tasks; this in turn was related to strain and depression.
That caregiver confidence was strongly associated with health care task difficulty suggests educational and empowering programs could improve caregiver well-being. Such interventions could further benefit the health of older adults. Reducing treatment burden for patients and caregivers may be an important part of prioritizing the most important and beneficial parts of treatment plans for people with multiple chronic conditions.
The attention directed to patient-centered health care in recent health reform efforts is particularly interesting to us given how common it is for a family companion to be present during older adults’ routine medical visits. In fact, we have found that nearly 40 percent of older adults are accompanied to visits with their regular physician, typically by a spouse or adult child. (Wolff J, Roter D. Arch Intern Med. 2008) Not only are these family members and friends present during the visit, but they are actively engaged in medical visit communication and the exchange of health information. (Wolff J, Roter D. Soc Sci Med. 2011)
In a forthcoming paper we were surprised to find that three quarters of older adults who attended physician visits with a companion continued to be accompanied one year later, nearly always by the same family companion. (Wolff JL, Boyd CM et al. forthcoming in JAGS) Collectively, our research suggests that for the subset of older adults who are the sickest, family “caregivers” are influential to the patient-provider partnership and to coordination of health information over time.
The Institute of Medicine “Retooling for an Aging America” report recognized family caregivers as a contributing member of the health care workforce. Acknowledging the importance of this workforce represents an important first step for integrating caregivers as partners in care but we believe that much work remains to develop health care professionals’ educational curricula and health system infrastructure to support truly patient- and family-centered care. We believe that improving quality of care for people with multiple chronic conditions will require acknowledging that often it is both patients and their caregivers who are navigating our complex health care system, making medical decisions, and managing daily treatments.
Better attending to the needs of older adults therefore also will involve developing a surveillance system so that caregivers’ needs do not go unattended. Optimal care will require health care providers supporting and informing patients and their caregivers in partnership.
Wolff J, Kasper J. Caregivers of frail elders: Updating a national profile. Gerontologist. 2006;46(3):344-356.
Giovannetti ER and Wolff JL, Cross-Survey Differences in National Estimates of Numbers of Caregivers to Disabled Older Adults; Milbank Quarterly; 2010: 88(3); 310-349.
Giovannetti ER, Wolff JL, Xue Q, Weiss CO, Leff B, Boult C, Hughes T, and Boyd CM (2011) Difficulty with Health Care Tasks Among Caregivers of Multimorbid Older Adults. Journal of General Internal Medicine (27 August 2011), pp. 1-8.
Wolff J, Roter D. Hidden in plain sight: Medical visit companions as a quality of care resource for vulnerable older adults. Arch Intern Med. 2008;168(13):1409-1415.)
Wolff JL, Boyd CM, Gitlin LN, Bruce ML, Roter DL, "Going it Together: Persistence of Older Adults' Accompaniment to Physician Visits by a Family Companion, forthcoming in JAGS
Wolff J, Roter D. Family presence in routine medical visits: A meta-analytical review. Soc Sci Med. 2011;72(6):823-831
Institute of Medicine. Retooling for an aging America: Building the health care workforce. Washington, DC: The National Academies Press; 2008.