AIMS: Alzheimer’s disease and related dementias (ADRD) are among the most feared diseases in the United States (US). Anxiety about developing ADRD, or dementia worry, occurs independently of objective cognitive status. Dementia worry is associated with lower perceived controllability of cognitive decline, which can impact health-related quality of life. We conducted a cross-sectional mixed methods study to examine relationships between dementia worry, self-reported cognition, and control beliefs about cognitive aging in older adults without a diagnosis of cognitive impairment.
METHODS: Community-dwelling US adults 65+ years were recruited online via ResearchMatch. Older adults completed both an online survey, including the Modified Dementia Worry Scale (MDWS), Everyday Cognition Self Report Form (ECog-12), and Patient-Reported Outcomes Measurement Information System (PROMIS®) measures, and participated in an audio-recorded telephone interview. Pearson correlations were calculated for quantitative data. To expand upon quantitative associations, thematic analysis examined beliefs and impacts described in qualitative data.
RESULTS: The sample (N=31) was mostly female (58.1%), married (61.3%), White (64.5%), and non-Hispanic (87.1%), with a bachelor’s or graduate degree (67.8%), and most knew or had known someone with ADRD (71.0%). Higher levels of dementia worry were significantly associated with lower levels of control beliefs about cognitive aging (r = -.49) and poorer self-reported cognition, including higher levels of perceived cognitive decline (r = -.45) and poorer perceived current cognitive functioning (r = -.56). Qualitative analysis identified key insights into how participants’ beliefs and concerns about dementia, cognition, and their ability to influence their own health during aging impact their health-related quality of life and lifestyle choices.
CONCLUSION: Our findings suggest that older adults’ dementia worry, an experience that can negatively impact well-being and quality of life, may be linked with perceptions of cognitive performance as well as the level of control one feels regarding cognitive aging. Depending upon their beliefs about their cognition and level of control over cognitive aging, participants described if and how dementia worry influenced health-related quality of life in both potentially beneficial and harmful ways. These results can inform patient-provider discussions regarding cognitive health or intervention development targeting dementia worry to reduce anxiety and promote health-related quality of life in aging.
