Sharing Future Concerns About Dementia: Differences in Care and Logistical Planning Concerns Across Dyad Members

TL;DR

This study finds that adult children of people with dementia worry more about future care and planning than their parents do, highlighting communication gaps and the need for better support.

Contribution

The study identifies specific sub-types of care and logistical planning concerns that differ between adult children and parents with dementia.

Findings

Adult children reported significantly more care and logistical planning concerns than parents with dementia.

Adult children were more likely to express concerns about safety planning and disease co-management.

These findings suggest a need for resources to improve communication and planning between parent-adult child dyads.

Abstract

The progressive and degenerative symptoms of dementia cause families to develop disease-related problems or worries, or “future concerns.” Adult children represent more than half of the primary caregivers to a person living with dementia (PLWD), but may have different future concerns than their parents, causing communication and planning disconnects as they become increasingly involved in care. In this study, we aimed to 1) compare the frequency of nominating concerns related to “care and logistical planning” across adult children and parents living with memory concerns or dementia, and 2) explore which sub-types of care and logistical planning concerns may be drivers of differences across dyad members. We analyzed videos of discussions about future concerns between 122 adult children and 108 parents who self-reported memory concerns and scored 12 or higher on the Mini Mental Status Examination. Participants were asked to share three future concerns with one another. Four coders established reliability (ICC = .92, kappa = .71-.83) to quantitatively content-analyze videos for future concerns. Paired samples t-test demonstrated adult children (M= .93/2.54) shared more care and logistical planning concerns than PLWDs (M=.47/2.17, p<.001). Results were driven by adult children’s (M=.37/2.54), as compared to parents’ (M=.10/2.17) frequency of sharing concerns related to planning for PLWDs’ safety (p<.001), and adult children’s (M=.25/2.54) as compared to parents’ (M=.02/2.17) frequency of sharing concerns related to challenges with disease co-management (p<.001). Results inform development of resources to help parent- adult child dyads understand each other’s concerns, make decisions, and plan for the future.