Caregiving During Crisis

Emory University

Status: Completed

Conditions: Caregiver Stress Syndrome

Treatments: Behavioral: Psychoeducational Intervention

Study type: Interventional

Funder types: Other; NIH

Identifiers

NCT04939714

3P30AG064200-02S1 (U.S. NIH Grant/Contract)

STUDY00001424

Details and patient eligibility

About

This study will test a prototype pandemic caregiver training and education course designed for caregivers of persons living with dementia (PLWD). Participants will be randomized to take the course immediately or to take the course after completion of an 8-week waiting period.

Full description

Family caregivers, the backbone of care for the upwards of 7 million community-dwelling individuals living with Alzheimer's disease in the U.S., provide at least 85% of the care these individuals receive, at some risk to their own well-being, and are instrumental in navigating healthcare systems. Without their care, it is almost certain that persons living with dementia (PLWD) would have much higher rates of acute and emergency care use than their age-matched peers, perilous venues for them in the best of times, potentially deadly during this pandemic. With coronavirus disease 2019 (COVID-19) restrictions, the amount of care they provide and the expertise needed to provide the care will increase. Typically, caregivers are strangers in healthcare and pandemic landscapes, but they are now called on to enact home care and safety measures and navigate an intricate, complex, and opaque system without the benefit of a compass or a translator, and largely without understanding their role in or having the skills for navigating the system. A variety of interventions have demonstrated benefit in enhancing caregivers' caregiving capacities, with resulting positive outcomes for both caregivers and care recipients. Only a few of these useful interventions, Tele-Savvy among them, have employed distance delivery means, thus enabling rural caregivers and others precluded by circumstance from attending in-person programs to take part in the intervention programs.

The study will assess a psychoeducational intervention for dementia caregivers. Participating caregivers will be randomized to immediately enroll in the study intervention or to be in a waitlist group that will begin the intervention 8 weeks later. Participants will complete interviews at baseline and after the 8-week study period.

Enrollment: 100 patients

Sex: All

Ages: 18+ years old

Volunteers: Accepts Healthy Volunteers

Inclusion criteria

• Providing care for a family member or friend with a confirmed diagnosis of dementia
• Lives in the community
• Co-resides with the PLWD
• Is the main caregiver for the PLWD
• Has access to a computer with internet service
• Can read and understand English

Exclusion criteria

• None

Trial design

Primary purpose: Supportive Care

Allocation: Randomized

Interventional model: Parallel Assignment

Masking: None (Open label)

---

100 participants in 2 patient groups

Psychoeducational Intervention

Experimental group

Description:

Caregivers receiving the psychoeducational intervention immediately.

Treatment:

Behavioral: Psychoeducational Intervention

Waitlist

No Intervention group

Description:

Caregivers on a waitlist to receive the psychoeducational intervention after a waiting period of 8 weeks.