Caregiver and older woman looking at mobile phone screen
Project Type - GBHI Projects, Pilot Projects

Palliative Care in Dementia

Northern America


The Palliative Care project has identified the palliative care needs and end of life challenges of persons with dementia using chart reviews and conducting interviews with patients and caregivers. Analyses have been conducted on quantitative data and two manuscripts have been drafted. Additional goals of the project include developing a holistic definition of optimal palliative care for individuals with dementia and their families to inform the development of an appropriate dementia palliative care tool for clinicians. It is anticipated that Atlantic Fellows will be able to use project data to develop complementary clinical interventions and research projects in the future.

Project Details

There are more than 5 million people living with Alzheimer’s disease (AD) and related dementias (ADRD) today in the United States, and this number is expected to increase to 16 million by 2050. People with dementia and their families face many challenges throughout the course of the illness, not the least of which is decision making regarding medical goals and end of life care. There is no cure for the many neurodegenerative diseases that cause dementia including Alzheimer’s disease (AD), vascular disease (VD), dementia with Lewy body disease (DLB), frontotemporal degeneration (FTD), and Huntington’s disease (HD). Therefore, dementia is a progressive and ultimately terminal illness. Little is known about the palliative care needs of persons with dementia (PWD) and their caregivers as their diseases progress, particularly those not living in nursing homes. Furthermore, little is known about what palliative care needs PWD have at what phase of their disease course.

  • Aim 1. Identify the palliative care needs and end-of-life challenges of PWD
  • Aim 2. Identify the educational needs of dementia health care providers.
  • Aim 3. Define, develop and evaluate a dementia palliative care intervention.

We will accomplish these aims via a combination of interviews, focus groups and/or modified Delphi process. Collectively, these three aims will significantly improve patient quality of life, decrease caregiver burden, and provide a dignified end of life to people with terminal and painful diseases.