Hospice Care for Individuals with Progressive Dementia
Beliefs and Practices of Social Work Providers and Familial Caregivers
Director
Director: Sara Sanders, Ph.D, MSW
Research assistants: Jim Power and Peggy Swails
Funding
John A. Hartford Foundation, Faculty Scholars Program
Description
With the number of individuals with Alzheimer’s disease, the most common form of progressive dementia, increasing, it is essential that interventions at all stages of the disease process be examined. Much of the focus thus far has been on the types of services that caregivers and individuals with progressive dementia need at the early and middle stages of the disease process, thereby neglecting their needs at the end stages of the disease. Hospice care is a valuable service for individuals and families dealing with other types of end stage diseases; however, limited focus has been given to the role of hospice with individuals and families experiencing end stage dementia.
The primary purpose of this ethnographic study is to articulate the beliefs and practices of social workers towards the care of individuals with end stage progressive dementia regarding hospice services. Social workers from hospice settings within the state of Iowa will be utilized for the sample. This study will also examine the beliefs and practices of familial caregivers who have utilized hospice care for their care recipient with progressive dementia, particularly noting the role of the social worker in the care of the care recipient and the caregiver. Ultimately, this study will provide information on how the role of the social worker on hospice teams can enhance the support for familial caregivers as they provide care to the care recipient with end stage dementia.
Data will be collected in five main ways: Interviews with hospice social workers; Interviews with family caregivers; Observations of social workers in the field; Chart Reviews; and Focus Groups. With the assistance of an outside qualitative consultant, data will be analyzed utilizing the techniques for ethnographic inquiry. This study has significant implications for social work practice, policy, and research and to national organizations including the National Alzheimer’s Association and the National Hospice and Palliative Care Organization.
