“They Are Lost Souls”: Medicare Home Care Nurses’ Perceptions of Medicare’s Inadequate Coverage of Homebound Persons With Alzheimer’s Disease

Abstract

Alzheimer’s disease is a major and increasing cause of illness and death in the United States, imposing significant social, economic, and psychological burdens on patients and their caregivers. This article explores the perceptions of Medicare home health nurses as to the impact of Medicare home health requirements on their decisions to admit, treat, cope with, and meet patient care needs of Alzheimer’s disease patients. It presents an exploratory study, which resulted from a gap in the literature review that found only 3 studies and 1 article since 1965. The study is based on interviews of a convenience sample of 37 home care nurses from 5 home health agencies in the New York City metropolitan area. Analysis followed the grounded theory 3-stage coding of interview data: open, axial, and selective coding. This research methodology was used because it was developed for interpreting qualitative data in the absence of a pre-existing theory. Five themes emerged from interviews: (1) Most Medicare home health patients have some level of Alzheimer’s disease (AD). Medicare home care regulations: (2) restrict nurses’ admissions of persons with AD and lack a mandatory evidence-based assessment for AD; (3) restrict the care that nurses can order for persons with AD; (4) do not cover evidence-based non-pharmacological interventions for AD patients ; and (5) nurses use 3 coping strategies to deal with the restrictions: most as conformists, others as innovators, some as rebels. Policymakers are urged to consider legislation expanding coverage of home-based, evidence-based non-pharmacological interventions for persons with Alzheimer’s disease; expanding Medicare home care social work services to allow delivery of appropriate services; requiring an evidence-based Alzheimer’s disease assessment at intake and as part of the OASIS; additional reimbursement for home health agencies treating Medicare homebound persons with Alzheimer’s disease.