Self-concept in early stage dementia: profile, course, correlates, predictors and implications for quality of life

Although it is increasingly accepted that people with dementia retain a sense of self, there is a need for empirical evidence regarding the nature of the self-concept in early stage dementia, how this changes over time and how it relates to quality of life.

Self-concept was assessed using the short form of the Tennessee Self-concept Scale in 95 individuals with early stage dementia; 63 were reassessed after 12 months, and 45 were seen again at 20 months. Participants also completed measures of mood, cognitive functioning and quality of life. Caregivers provided proxy ratings of self-concept, completed measures of symptoms and distress at symptoms and rated their own levels of stress and well-being.

Self-ratings of self-concept were close to the average range for the standardization sample, and the distribution did not differ significantly from expected values. Although caregiver ratings were slightly lower, discrepancies were small. There were no significant changes over time in self-ratings or informant ratings or discrepancies. At Time 1, self-ratings were predicted by anxiety, depression and memory, caregiver ratings were predicted by caregiver distress and by depression in the person with dementia and discrepancies were predicted by caregiver distress. These models remained predictive at later time points. Self-rated self-concept predicted quality of life, with the relationship only partially mediated by depression and anxiety.

Self-concept appears largely intact in early stage dementia, but in view of the association between self-concept and quality of life, a preventive approach focused on supporting self-concept may offer benefits as dementia progresses.