JMIR Publications

ABSTRACT

Background:

More than half of family caregivers assist a person living with dementia (PLWD) with medication management, including administration. Family caregivers report high rates of medication refusal behaviors as care recipients’ dementia advances, exacerbating caregiver overload and strain. While medication management challenges have been identified among clinicians, little is currently known about the challenges and strategies employed by family caregivers to manage medication refusals of PLWDs in the community setting.

Objective:

To describe medication management challenges and family caregiver responses, including utilized medication management strategies.

Methods:

We conducted a descriptive, qualitative study of family caregivers of PLWD recruited from two ongoing NIH funded R01 studies (R01AG074255; R01AG072569) between April 2024 and March 2025. Caregivers completed a sociodemographic questionnaire, the 10-item Short Version of the Burden Scale for Family Caregivers, and participated in a semi-structured, one-on-one qualitative interview focused on describing family caregiver medication management strategies. Interviews were analyzed by two coders using deductive content analysis.

Results:

Twelve family caregivers completed interviews. The majority were female (n=10; 83%) and reported high caregiver burden (n=10; 83%). Half were White and 42% were African American/Black. Medication management challenges, included 1) difficulties related to the steps of medication management itself (e.g., filling prescriptions and understanding, organizing, administering, monitoring, and sustaining medication regimens through maintenance tasks) and 2) the time and effort needed to manage medication refusals. Impacts on the caregiver included stress, fatigue, and frustration directed at themselves, the healthcare system, and the PLWD. Medication management strategies included: organizing medications, establishing a medication routine, promoting education and discussion of prescribed medications with the PLWD, monitoring the PLWD during the medication administration process for refusal behaviors and medication side effects, advocating for deprescription, and developing key behavior and motivation focused strategies with the PLWD. Less common strategies included covert administration and accepting the PLWD’s medication refusal.

Conclusions:

This study highlights important contextual nuances of the challenges and chosen medication administration strategies family caregivers of PLWDs use in the community setting. Further description of family caregivers’ choice of medication administration strategies are needed, including the impact of PLWD’s disease stage on strategy success rates, to develop acceptable and effective medication management interventions for caregivers of PLWD who exhibit medication refusal behaviors. Clinical Trial: N/A