End-of-Life Care ExperiencesLive webinar held February 15, 2012
2005 Alzheimer’s and Related Diseases Research Award*
Little is known about end-of-life care for individuals with AD. The ARDRAF-funded project produced a new instrument that can be adapted for future research to address the care needed, as well as a broader definition of the environment and how it supports the end-of-life experience for patients and their families. To explore this experience, a qualitative interview instrument was developed to use with family caregivers who were closely involved with end-of-life care for relatives with AD. In this small pilot project, four family members were interviewed after the death of their loved ones. The four cases, two males and two females varying in age from 65 to their 80s, revealed a range of end-of-life experiences.
These interviews yielded the insight that maybe there are many different ways that end-of-life care can be provided, and not just one “good” way. Many people are able and willing to take on the care of their family member, if adequate information and training are provided. For some, the ability to have their family member at home with them is the reward that makes it worth it. However, the extent of care needed, the responsiveness of the family member, the health of the caregiver(s), and the housing and support situations, can all intersect in a variety of ways that make no one scenario perfect for all. Although most people say they would prefer to die at home, in some situations the nursing home can be a satisfactory choice, particularly if hospice is involved.
Future research in this area should address the care needed, as well as a broader definition of the environment and how it supports the end-of-life experience for patients and their families.
Dr. Anne Glass, the author of this study funded in 2005 by the ARDRAF, presented on the topic on the 15th of February, Noon Eastern; discussion was moderated by Dr. E. Ayn Welleford.
To receive the full final report submitted to the ARDRAF, please contact the investigators or the ARDRAF administrator, Dr. Constance Coogle (firstname.lastname@example.org).
(Dr. Glass can be reached at 706/425-3222
Download slides here.
The Virginia Center on Aging which administers the Alzheimer’s and Related Diseases Research Award Fund for the Commonwealth of Virginia, provides seed money to researchers in Virginia to stimulate innovative research into biomedical and psychosocial aspects of dementia, including cell biology, caregiving, and animal modeling.
Anne P. Glass, Ph.D., serves as the Associate Director of the Institute of Gerontology at the University of Georgia (UGA) and she is an Associate Professor in the Department of Health Policy and Management, all within the UGA College of Public Health. She has also served as the Associate Director of the Georgia Geriatric Education Center.
She has taken a leadership role in Georgia with a statewide effort to help prepare the public and the workforce for our aging population, through the development of a training website and associated training modules, and just this month, she was interviewed on NPR (Atlanta) to discuss the question, “Are we prepared for an aging America?” She created the DVD, Aging 101 for Georgia (2009), which contains the key information people need to know about aging. This video targets not only those who work with older adults, but also older people and their adult children. The video, which she conceptualized and produced, incorporates university experts, the Executive Director of the Georgia Division of Aging Services, and older adults themselves. The DVD has been distributed free statewide to public libraries, senior centers, churches, public health departments, and other agencies, and has been very well received. It is also accessible on YouTube. It is being used widely in classrooms as well as by the public.
One of her major research interests is the new movement toward elder intentional communities and the potential for older adults to provide mutual support to each other, and she recently completed a longitudinal study on this topic, supported by the Retirement Research Foundation. Another research focus is improving long term and end-of-life care. She recently conducted a study to document the state of palliative and end-of-life care in Georgia, funded through the Georgia for a Lifetime initiative. Facilitating the interaction between healthcare providers and their older patients and patients’ families continues to be a primary research concern, particularly as it relates to long term and end-of-life care.
Glass is also the Graduate Coordinator for the Graduate Certificate of Gerontology at UGA and she teaches three courses for the certificate program. Within and beyond Georgia, she is recognized for her role as coordinator, recently for the seventh year, of the annual well-respected Regional Student Mentoring Conference in Gerontology and Geriatrics. This conference is a partnership with other institutions in Georgia, as well as the University of Alabama, University of South Florida, and the University of Kentucky.
Before coming to Georgia, Glass received her Ph.D. from Virginia Tech and worked for several years in Virginia in a variety of roles, including in government agencies, as a researcher at the Center for Gerontology at Virginia Tech, and for ten years, with a large healthcare system. Earlier, she completed the Graduate Certificate of Gerontology at UGA while obtaining her master’s degree. She has published several journal articles based on her work both in Virginia and Georgia.
The purposes of this study was to develop and pilot-test an instrument to measure family quality of life in dementia (FQOL-D).
E. Ayn Welleford, PhD, received her BA in Management/Psychology from Averett College, MS in Gerontology and PhD in Developmental Psychology from Virginia Commonwealth University. She has taught extensively in the areas of Lifespan Development, and Adult Development and Aging, Geropsychology, and Aging & Human Values. As an educator, researcher, and previously as a practitioner she has worked with a broad spectrum of individuals across the caregiving and long term care continuum. As Associate Professor and Chair of VCU’s Department of Gerontology, she currently works to “Improve Elder Care through Education” through her Teaching, Scholarship, and Community Engagement. Outside of the classroom, Dr. Welleford provides community education and serves on several boards and committees. She is the Immediate Past Chair of the Governor’s Commonwealth of Virginia Alzheimer’s and Related Disorders Commission. Dr. Welleford is the proud recipient of the 2008 AGHE Distinguished Teacher Award.