Care Ecosystem: Navigating Patients and Families Through Stages of Care, Extension Trial

For people ages 18 years and up

This study will enroll patients as well as their primary caregivers as research participants.

Inclusion criteria for patient participants:

• Patient has a diagnosis of dementia with a progressive course
• Patient has a primary caregiver (identified as having primary responsibility for patient) that is eligible for and agrees to join the study
• Patient is covered by Medicare or Medi-caid or is Medi-pending
• Patient is expected to live at least 3 months based on assessment by the referring provider, the patient's primary care provider, or medical record review
• Patient speaks English, Cantonese, or Spanish
• Patient lives in California or Nebraska or Iowa
• Patient is age 45 or older

Inclusion criteria for caregiver participants:

• Caregiver has primary responsibility for dementia patient that is eligible for and agrees to join the study
• Caregiver speaks English, Cantonese, or Spanish
• Caregiver is a legal adult
• Zarit-12 caregiver burden score greater than or equal to 17 at pre-randomization (baseline); this criteria is specific to this extension trial

Exclusion Criteria:

• Patient resides in a nursing home or skilled nursing facility at time of enrollment
• Participant is enrolled in a similar clinical trial that precludes their participation in the investigator's trial
• Patient is pregnant