Supporting Family Caregivers of Persons With Dementia
Based on preliminary work, whereby investigators examined pain management challenges and needs of caregivers of hospice patients with dementia, this team designed a cognitive behavioral intervention informed by the relational model of stress, entitled ENCODE (Empowering Caregivers of Patients with Dementia) to assist caregivers in effectively identifying and communicating their pain management challenges and needs. The investigators propose a 5-year randomized clinical trial in which caregivers of patients with Alzheimer's Disease and Related Dementias (ADRD) will be randomly assigned to a group receiving standard hospice care with the addition of friendly video-calls providing social support (attention control group) or a group receiving standard hospice care with the addition of the ENCODE intervention (intervention group).
• enrolled as a family/informal caregiver of a hospice patient with primary or secondary diagnosis of Alzheimer's disease or other related dementia
• responding with yes to the question about having any concerns about effectively managing their care recipient's pain
• 18 years or older
• no or only mild cognitive impairment
• speak and read English, with at least a 6th-grade education