End-of-Life Care for Patients with Dementia

As the United States population continues to age and the incidence of Alzheimer’s Disease and related disorders (ADRDs) increases, it is crucial that we examine end-of-life care in this patient population.

The prevalence of dementia in older adults is currently at 50% of the population over age 85. By 2030, approximately 8 million individuals will suffer from dementia. Unfortunately, end-of-life care for this population is less than adequate, and hospice care is too often underutilized. To explore this issue further, the Pennsylvania Hospice Network (PHN) developed a Task Force to survey Pennsylvania Hospice providers about barriers to and facilitators of hospice access for patients with dementia. PHN partnered with the Jefferson School of Population Health and the Delaware Valley Chapter of the Alzheimer’s Association to develop and refine the Survey instrument. The Survey link will be sent to hospice agencies via email this week with a request for response no later than October 31st.

In addition to hospice demographic data, the survey will illuminate providers’ access and quality concerns, such as the number of hospice enrollees with dementia and length of hospice stay in 2006-2008, trends in hospice admission for patients with dementia, perceived regulatory and other barriers to hospice care for this population, hospice capabilities in providing care to persons with dementia, and community outreach activities.

The Survey is a first step toward quantifying hospice access for persons with dementia. We expect that the findings will provide direction for further research and enhanced advocacy efforts, and data to inform policy direction. We will update you with more information in the near future.

If you have questions, please contact JoAnne Reifsnyder, PhD (joanne.reifsnyder@jefefrson.edu) or Laura Kimberly, MSW, MBE (laura.kimberly@jefferson.edu).

JoAnne Reifsnyder, PhD
Assistant Professor
Program Director, Chronic Care Management
Jefferson School of Population Health