Family Quality of Life in Dementia: Key Concepts in Dementia CareLive webinar held July 30, 2012
2009 Alzheimer’s and Related Diseases Research Award*
A diagnosis of a dementing illness, such as Alzheimer’s disease, affects the entire family unit and the person with the diagnosis. Yet, there is a paucity of studies on the impact that dementia has on the family of the person with the diagnosis.
The purposes of this study was to develop and pilot-test an instrument to measure family quality of life in dementia (FQOL-D).
The first phase employed professionals with expertise in dementia care and providers of services for persons with dementia and their families, to reach a consensus on items to be included in a FQOL-D scale. Twelve expert health care providers completed three Delphi survey rounds to determine face validity of items that were important for determining FQOL care. Focus group interviews with persons with mild-moderate stage dementia and their family members were conducted to fully capture their perspectives on FQOL-D. Findings were used to develop and test a clinically-meaningful instrument to be used to evaluate the effectiveness of interventions and supportive services for families and persons with dementia.
The 42-item FQOL-D instrument operationalizes family quality of life in five domains: family interactions; direct care/activities of daily living support; emotional/behavioral well-being; physical and cognitive well-being; and disease-related support/medical care. Data were gathered from families across the Commonwealth of Virginia. The psychometric properties of the instrument were assessed using two instruments (Family Resource Scale and Family APGAR) reflective of the factors included in our FQOL-D scale. When validity coefficients were greater than .70 or greater, concurrent validity was supported. The instrument demonstrated content validity based on expert consensus and family interviews. The instrument showed good internal consistency and validity.
The FQOL-D instrument is an easy to use, reliable, and valid tool to measure how a dementing illness affects the entire family. Because the patient/family population upon which the psychometric properties were tested was limited to Virginia, further research is needed before it can be universally recommended as a clinically-meaningful instrument for more diverse patient populations.
Karen M. Rose, PhD, RN and Ishan C. Williams, PhD
(Dr. Rose may be contacted at 434/ 924-5627; Dr. Williams may be contacted at 434/924-0480)
To receive the full final report submitted to the ARDRAF, please contact the investigators or the ARDRAF administrator, Dr. Constance Coogle (email@example.com).
Rose, K., & Williams, I. (2011). Family matters: Family quality of life in dementia. Journal of Gerontological Nursing, 37(6), 3-4.
PUBLISHED ABSTRACT(S)/RELATED PROFESSIONAL PRESENTATION(S)
Williams, I. C., Rose, K., & Parvulescu-Codrea, S. (2010). Family quality of life in dementia. Presented at the 31st Annual Meeting of the Southern Gerontological Society. Richmond, VA.
Williams, I. C., Rose, K., & Parvulescu-Codrea, S. (2010). Assessing quality of life of families caring for members diagnosed with dementia. Presented at the 63rd Annual Scientific Meeting of the Gerontological Society of America, New Orleans, LA.
Williams, I. C., & Rose, K. (2011). The Family Quality of Life in Dementia care: Instrument Validation. Paper presented at the Southern Gerontological Society 32nd Annual Meeting, Raleigh, NC.
Rose, K. & Williams, I. C. (2012). Invited keynote at Exploring main issues related to Quality of life and well-being across the life-span. Tuskegee University, School of Nursing and Allied Health and the National Center for Bioethicsin Healthcare and Research. Tuskegee, AL.
Ishan C. Williams, PhD, is an Assistant Professor at the University of Virginia, School of Nursing. She received her Ph.D. in Human Development and Family Studies from The University of North Carolina at Greensboro. Her current research focuses on older adults with cognitive impairment or dementia and chronic illnesses, and the health and well-being of family caregivers. She focuses on understanding the health care needs of older adults and their family caregivers within social, cultural, and geographical contexts. With colleagues from UVA, Dr. Williams is also studying diabetes self-management among older African American adults living in rural communities.
Karen Rose, PhD, RN, is an Associate Professor of Nursing and Director of the Baccalaureate Program within the Nursing School at the University of Virginia, with expertise in gerontological nursing. Dr. Rose’s research interests are in intervening to improve stress, sleep, depressive symptoms, and quality of life using non-pharmacological approaches in persons with Alzheimer’s disease and in their family caregivers.
Dr. Rose has published her work in peer-reviewed journals and has presented her work on dementia and family caregivers at national and international conferences.
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.