Nov 11, 2011, 4:26 PM, Posted by Cynthia Boyd
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.