A communication phenotype for varying information needs among caregivers of persons with dementia

Informal caregivers of persons with Alzheimer's disease and Alzheimer's disease-related dementias (AD/ADRD) have limited knowledge of the disease, yet they have immense responsibility, such as medication administration, managing symptoms, assisting with activities of daily living, and making end-of-life decisions. Our objective was to explore information seeking among informal caregivers to learn about their information needs.

We interviewed informal caregivers of persons with AD/ADRD who passed away in the last 2 years. Interviews occurred from July 2024 to June 2025 in a large academic health system. We analyzed information needs of AD/ADRD caregivers using an adapted version of the Four States of Information Needs conceptual framework. We used a deductive-inductive approach, beginning with the existing framework, and then refining it with inductive observations.

Twenty-seven informal caregivers were interviewed (median age 65 years; 77.8% female; 81.5% white; care provided for a median of 5 years; 63.0% were the patient's child). Four phenotypes were revealed: (a) Proactive Caregivers, who were assertive communicators and motivated to seek information in advance, (b) Activated Caregivers, who had less knowledge than Proactive Caregivers, but communicated with staff and took preemptive measures, (c) Responsive Caregivers, who were overwhelmed and rarely communicated their needs to clinical staff, and (d) Reflective Caregivers, who identified information gaps, but did not always attempt to rectify them.

The needs of informal caregivers vary. Potentially, clinicians can recognize caregivers' phenotypes and adapt the support they provide to improve the caregiver experience.