Phantoms of Home Care: Medicare Treats Alzheimer's Disease Clients As Deviants

The presentation is based on a May 2016-June 2017 Institutional Ethnography in one Medicare-certified home health agency in New York City. The study explores the lived experiences of 16 Persons with Alzheimer's disease (PWAD) and their caregivers, 6 home care nurses and 3 social workers involved in their care, and 4 agency managers. The focus is an exploration of the how the illness and disabilities status of the PWAD affects their assessment, plan of care, treatment, discharge planning, and meeting their physical and psychosocial needs. Results indicate the confluence of Medicare regulations and organizational policies, as interpreted by managers, nurses and social workers, result in the PWAD and their caregivers feeling they: do not receive necessary psychosocial services; are discharged with significant unmet needs, often resulting in frequent readmissions; are treated more as ghost clients than actual clients; and are deviants with significant psychosocial and physical health needs who are not normal home care patients. Mthods of analysis to distill the major themes and implications for practice and policy reform are discussed.