CAREGIVER QUALITY-OF-LIFE AND THE CARE PROVIDED TO PERSONS WITH ALZHEIMER'S DISEASE

Abstract

Primary informal caregivers are mainly responsible for the care of persons with Alzheimer's disease (AD). Research has shown that the quality-of-life (QoL) experienced by unpaid caregivers of persons with AD is generally lower than the QoL of caregivers of persons who do not have AD. The literature does not report on any studies undertaken to examine whether caregivers' QoL is related to the level or quality of care that they provide to persons with AD. This thesis investigated the association between caregiver QoL and the level or quality of care provided. I conducted a systematic review and found no study designed specifically to examine this association. I included only one study in the systematic review because it contained variables that were relevant to caregiver QoL and the level or quality of care. However, this single included study did not specifically examine the association between QoL and level or quality of care. In addition, I could not find an instrument designed specifically to measure level or quality of care in AD. To answer this question, I contacted the authors of the single study included in the systematic review and obtained their dataset. Quantitative analysis of these data did not show a statistically significant association between caregiver well-being (surrogate for QoL) and level or quality of care. Further, I conducted a qualitative study of AD caregivers to obtain data on the components of a useful questionnaire for measuring level or quality of care. Caregivers suggested the development of a questionnaire that addresses the following areas: case management approach, increasing care demands due to declining status of the care recipient, social support, and the role of hired help. The thesis concludes with an integrative discussion of the aforementioned studies. I discuss important areas for future research, including the need for a longitudinal study.