Dementia worry (DW) is anxious rumination about personal risk for dementia. Dementia illness perceptions, or subjective beliefs about illness that can influence health behaviors and outcomes, may contribute to DW. Further, personal experience with dementia, such as having a biological family member with dementia, may affect DW and previous research has demonstrated that personal experience with dementia moderates the relationship of age to DW. We examined whether illness perceptions, specifically personal controllability, treatment controllability, and age predict DW and whether personal experience with dementia or age moderated these relationships.

Adults (≥50 years old, N=252, M_age=65.31, SD=8.93, 77.8% women) living in Ohio and Louisiana completed an online survey. 94 participants reported no personal dementia experience and 158 participants endorsed having a biological relative with dementia. Illness perceptions were measured with the Illness Perception Questionnaire (IPQ) which was modified to assess perceptions on cognitive decline; subscales included in the current study include personal controllability (helplessness; IPQ PC) and treatment control (IPQ TC), with higher scores indicating belief of having less personal or treatment controllability. DW was measured with the Dementia Worry Scale, with higher scores indicating higher worry.

DW, IPQ PC and IPQ TC scales were initially positively skewed and log-transformed. In the first model, IPQ TC (β=.242, p<.001), dementia experience group (β=.133, p=.031), age (β=-.168, p=.007), and gender (β=-.131, p=.035) significantly predicted DW. Experience group interacted with age to predict DW (β=-1.015, p=.025), but not IPQ TC (β=-.283, p=.653). Age did not predict DW in the non-experience group (β=.02, p=.850), but did predict DW in the biological experience group (β=-.248, p=.002). In the second model, IPQ PC (β=.178, p=.005), dementia experience group (β=.136, p=.03), age (β=-.149, p=.017), and gender (β=-.153, p=.015) significantly predicted DW. There was a non-significant trend for two interactions with the experience group (exp group x IPQ PC [β=-1.257, p=.068]; exp group x age [β=-.848, p=.062]). Specifically, age was related to DW in the biological experience group (β=-.248, p=.002), but not in the non-experience group (β=.02, p=.850). Further, IPQ PC was related to DW in the non-experience group (β=.297, p=.004), but not in the biological experience group (β=.072, p=.371).

Belief that one has less personal controllability, less treatment controllability, having biological dementia experience, lower age, and female gender each significantly predicted higher DW as main effects in their respective models. Further, age interacted with group experience, such that younger age in the biological experience group was associated with higher DW. In addition, trends suggested that less personal control beliefs predicted higher DW in the non-experience group only. Findings suggest that clinicians should consider personal dementia experience when individuals present with concerns about dementia. Future studies should continue to investigate factors that influence DW and health seeking behaviors, as well as differences in such factors between individuals with and without personal dementia experience and across age groups. Findings may inform dementia prevention efforts.