Project Description
Experience and Palliative Care Needs of People Living at Home with Severe Dementia and their Caregivers
In
the United States, more than 30% of people with advanced dementia die at home
every year. Even more live at home with severe dementia, relying on help from
caregivers with activities like dressing, eating and bathing while symptoms,
behaviors, and ability to communicate progressively worsen. Despite agreement
about the appropriateness of palliative care for dementia, few receive this
care. Researchers have focused primarily on understanding the experience of
people with dementia in nursing home settings and testing palliative care
approaches to improve their quality of life. Yet relatively little work has
been done to understand the alternative locations of care: residential home
settings.
The
proposed study will address this critical knowledge gap about people living at
home with severe dementia. First, I will use a nationally-representative dataset
to describe the population and understand the medical, functional, and social
factors associated with mortality and time to nursing home placement among
people living at home with severe dementia. Second, I will use interviews with
people with dementia and/or their caregivers to identify anticipated needs,
values and priorities for palliative and end-of-life care decisions.
As
a PhD-trained health services and policy researcher, Assistant Professor in the
UCSF Division of Geriatrics, and former leader within a large community-based
hospice, I am well-positioned to conduct the proposed study. Engaging in the
proposed research and career development activities under the mentorship of
Christine Ritchie and Alex Smith, I will gain additional knowledge and skills
with: a) clinical care for dementia, b) advanced quantitative methods, and c)
interviewing people with dementia and caregivers. The NPCRC Career Development
Award will provide me with necessary data and skills for strong K01 and R01
applications to develop and test evidence-based and person-centered primary
palliative care interventions that address the needs of people living at home
with severe dementia.
Bio
Krista
Harrison, PhD, is an Assistant Professor in the Division of Geriatrics within
the UCSF School of Medicine. She completed a PhD in Bioethics, Health
Policy & Management at Johns Hopkins Bloomberg School of Public Health and
postdoctoral training & at the University of California, San Francisco
(UCSF) including an aging research fellowship and a certificate in
implementation science. Before joining faculty at UCSF, Dr. Harrison evaluated
national policies and programs at Mathematica Policy Research and led the
research and education programs at Capital Caring, a large nonprofit hospice.
Her mixed-method research aims to improve the quality of life of older
adults with severe dementia and other serious illnesses who live in home-
and community-based settings by transforming clinical practice, health
systems, and policy. Dr. Harrison is also a UCSF Pepper Center Scholar,
UCSF K Scholar, AAHPM Research Scholar, and Atlantic Fellow for Equity in Brain
Health at the Global Brain Health Institute.
Email: krista.harrison@ucsf.edu