Phantoms of Home Care: Medicare's Designed Neglect of Persons with Alzheimer's Disease and Their Caregivers

Background: Alzheimer's disease is a major cause of illness and death in the United States, imposing significant social, economic, and psychological burdens on clients and their caregivers. Over 5 million, primarily older, Americans were estimated to have Alzheimer's disease in 2007, with most living at home, cared for by family members or friends (Alzheimer's Association, 2007a, 2007b). A literature review indicates that there are psychosocial, rather than medical, interventions which currently benefit the Alzheimer's population. Despite these findings, the Medicare home health benefit provides virtually no psychosocial care to this population. The literature review also indicates that there has been no research on how home care social workers and nurses perceive, cope with, and make decisions about this population and the consequent impact on their care needs. Purpose & Method: The paper addresses this research gap, using a qualitative method. A New York City-based convenience sample of thirty-three home care nurses and thirty-nine home care social workers were interviewed.

Results: The overall finding is that the Medicare home health policy, as mediated by home health agencies, nurses, and social workers, significantly influences the care of persons with Alzheimer's disease and their caregivers. Both home care nurses and social workers assert the lack of coverage results in a system with many unmet client and caregiver needs, high costs, and limited quality. As a result, nurses characterized persons with Alzheimer's disease as “phantoms” while social workers characterized them as “victims of designed neglect”.

Overall (68%) social workers and nurses conformed to policy, with social workers more conformist than nurses. Both social workers and nurses agreed that the more conformist their practice, the more limited the care and greater the unmet client need. Nurses and social workers were virtually equal as innovators, seeking creative, legitimate means to provide greater care, and rebels, invoking illegitimate means to achieve their goals. These coping strategies validated, in part, pre-existing theory of Merton (1938, 1957). Home care nurses expressed greater job satisfaction, ability to effectively deliver care, and ability to use professional training than social workers.

Implications: The paper recommends research, policy, practice, and advocacy actions, including a demonstration project to create more cost-effective Medicare home health coverage of the needs of persons with Alzheimer's disease and their caregivers. The proposed model is similar to the Medicare Hospice Benefit which makes extensive use of social workers compared to the limited use in Medicare home health (i.e., 1-2% of all national home visits.