Using Self-Reports of Individuals with Dementia to Examine How the Experience of Dementia Affects Psychosocial Outcomes

Most studies of the psychological and social outcomes associated with dementia have relied on reports given by caregivers and clinicians to describe the experiences of individuals with dementia. Unfortunately, using such proxy reports can introduce potential biases that lead to under- or overestimating the subjective experiences of individuals with dementia. Recently developed methods may enable researchers to better measure the perspectives of individuals with dementia directly. Using these methods has revealed that caregivers and clinicians tend to rate the quality of life of individuals with dementia lower than the individuals themselves rate it. One study has also suggested that clinicians and caregivers tended to more frequently report depressive symptoms than individuals with dementia report themselves, although another study did not find this pattern. Overall, these methods for obtaining self-reports of individuals with dementia have been shown to provide consistent and accurate responses, which permits us to examine the experience of dementia from a firsthand perspective.

A recent article in The Gerontologist took advantage of these methods to examine what aspects of the experiences of persons with dementia might predict the outcomes of anxiety, depression, and quality of life. The researchers input the information about the subjective experiences of individuals with dementia into the larger Stress Process Model for individuals with dementia, allowing them to test the impact of a number of pathways that influence the outcomes associated with dementia. This Stress Process Model includes individuals’ backgrounds, objective and subjective stressors associated with dementia, and secondary strains brought on by dementia’s impact on individuals’ social roles and self-perception.

Looking at the anxiety outcomes associated with dementia, the researchers found that “embarrassment about memory problems was found to significantly predict anxiety, above and beyond the other variables.” The greater the embarrassment about memory problems, the more symptoms of anxiety were observed.

For depression, the factors in the Stress Process Model that most predicted depression among individuals with dementia were feelings of physical health strain and role captivity, or the unwanted need to perform a certain social role.

In terms of quality of life, perceptions of self-efficacy (a belief in one’s own ability to complete tasks and reach goals) and perceived difficulty with independently performing activities of daily life (ADLs) were the strongest predictors. Less difficulty with independently performing ADLs and reports of higher levels of inner strength and personal growth both predicted higher levels of self-reported quality of life.

Based on the identified aspects of the illness experience that predict negative outcomes for individuals with dementia, this study also suggests a number of potential interventions. In order to combat anxiety, the researchers recommend interventions that target the management of embarrassment regarding memory problems. To address depression, the study suggests interventions aimed at improving physical health and alleviating the feelings associated with being trapped in a social role. Interventions addressing physical health could also lead to higher ratings of quality of life by enabling individuals with dementia to perform a greater number of ADLs. For quality of life, another suggested intervention would improve feelings of self-efficacy by focusing individuals on their remaining strengths.


Dawson NT, Powers SM, Krestar M, et al. Predictors of self-reported psychosocial outcomes in individuals with dementia. The Gerontologist (2013); 53: 748–759.

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