Understanding the dementia patient's perspectives of person-centered needs in facilitating positive patient outcomes has been a neglected area of study. Using Lawton's model of quality of life (QOL) in cognitively impaired persons, this proposed, interdisciplinary longitudinal study builds on the investigator's preliminary study of predictors of QOL in early-stage dementia patients. Following subjects remaining in the current study (N=74), this study will identify both patient-centered and external variables predicting QOL in dementia patients as they move through the disease stages. Quantitative measures will be used to identify both patient-centered variables (personality, maintenance of past activities, personal control) and external variables (caregiver characteristics, role stress, social support, quality of patient/caregiver relationship, facilitation of patient self care) predicting to patient QOL. Using qualitative approaches found to be effective in assessing patient perceptions, a second study aim is to assess the patient's subjective responses to the disease's progression, including a brief life history review to assess the patient's retained memories of meaningful past events, and, in turn, to identify memory-related factors associated with patient QOL. Finally, based on the strength of selected caregiver variables (caregiver role stress and quality of patient/caregiver relationship) in predicting patient QOL in the preliminary study, data will be obtained concerning approaches caregivers utilize to enhance maintenance of activities and quality in the patient/caregiver relationship as patients progress through the disease process. A descriptive, repeated- measures design will be used to address the study aims, with data collected at 5, 6-month intervals. Building on longitudinal data from the preliminary study, a total of 4 years of subject data will be available, providing a rich understanding of the patient's perspective and of predictors of QOL as patients move through the disease process. Based on the attrition rate from the preliminary study, 56 subject pairs should remain throughout the study, allowing for a power of .82. Project collaborators (Dr. Dickertson-Putman, life history review; Dr. Csokasy, personal control) and consultants (Dr. Buckwalter, methods and interpretation of data; Dr. Knafl, qualitative data analysis; Dr. Austrom, family relationship data) will assist in assuring proper interpretation of both the qualitative and quantitative data.
