by Rebecca Logsdon, PhD
Alzheimerís disease (AD) profoundly affects quality of life (QOL) of the affected person and his or her family caregivers, yet little is known about how the two are related. The caregiver / care recipient relationship in dementia is unique, placing each individual in new, unfamiliar, and interdependent roles, and interventions designed to improve QOL for the person with dementia may have unexpected consequences for caregiver QOL, and vice versa.
For example, a medication that is intended to improve function in the person with dementia may decrease, rather than increase QOL, if it must be taken several times a day and getting the person to take it is a constant battle. Because of this, it is important to evaluate QOL of both the person with dementia and the primary caregiver and to clarify the association between the two.
Research has shown that individuals with mild to moderate AD can reliably describe their own QOL when questions are structured and presented in an understandable and supportive interview-based format. In addition, investigations of caregiver QOL have found that as patient depression and behavioral disturbances increase, caregiver QOL decreases. A recent investigation by Drs. Rebecca Logsdon, Linda Teri, Susan McCurry, and Laura Gibbons, at the UW Alzheimerís Disease Research Center evaluated changes in QOL for both persons with dementia (participants) and their family caregivers who were enrolled in a behavioral intervention clinical trial. Ninety-five community-residing individuals with probable AD and their family caregivers participated in this study. Average age of participants was 80 years, and cognitive impairment ranged from mild to severe. The average duration of dementia was five years. Caregivers were primarily spouses (55.3%) or adult children (37.3%), and lived in the same house as the person with dementia (92.6%). Average caregiver age was 65 years. The study used a measure developed at the UW by ADRC researchers, the Quality of Life in Alzheimerís Disease (QOL-AD) scale.
Participants and caregivers were interviewed about their QOL at the beginning of the study, and again after two months of treatment. Participant self-reports of their own quality of life were compared to caregiver ratings of the participantís quality of life, as well as caregiver self-reports of their own quality of life. These three QOL ratings were then examined in relationship to problems being experienced by the participants (such as depression, anxiety, and behavioral disturbances), and their caregivers (including depression, burden, and distress over participant behavior problems).
Neither participant nor caregiver QOL ratings were significantly associated with age, education, or gender. At the two-month assessment, improved participant self-rated QOL was associated with decreased participant depression and anxiety, and decreased caregiver distress about participant behavior problems. Improved caregiver rating of participant QOL was associated with decreased participant depression and anxiety, caregiver ratings of their own sense of competence, and caregiver ratings of their own QOL. Improved caregiver QOL was associated with decreased caregiver and participant depression, improved participant functioning on activities of daily living, improved caregiver sense of competence, and decreased caregiver burden.
This study was unique in that it was the first to examine quality of life in both the persons with dementia and their primary caregivers, and to then explore the relationship between the two. For participants with dementia, their own depressive and anxious symptoms were very important to their self-assessment of QOL. Thus, interventions that decrease these distressing symptoms are likely to improve participant QOL. In contrast, caregiver reports of participant QOL were influenced by caregiver ratings of their own competence and quality of life, as well as by caregiver perceptions of participant depression and anxiety. Finally, caregiver reports of their own QOL were associated with caregiver depression, burden, distress over behavior problems, and sense of competence. This investigation highlights the importance of obtaining QOL assessments from both the person with dementia and the caregiver. It also illustrates that although the perspective of each member of the dyad about the care recipientís QOL is influenced by some common factors (participant depression and anxiety), caregiver ratings of the care recipientís QOL are also associated with their own personal experiences and distress.
Understanding how both persons with dementia and caregivers rate their quality of life is an important aspect of evaluating the perceived costs and benefits of treatment. Recognizing the importance of the relationship between care-recipient and caregiver will improve our ability to meet the needs and enhance the lives of both persons, rather than focusing on only one at the possible expense of the other.
This study was published in: Vellas, B., Grundman, M., Feldman, H., Fitten, L.J., Winblad, B., & Giacobini, E. (Eds.) Research and Practice in Alzheimerís Disease and Cognitive Decline, 2005, Vol. 10, pp. 221-225. New York: Springer Publications.