Clinical Trials

Inclusion Criteria:

• Patient and caregiver willing to participate as a dyad (patients will need a legally authorized representative to consent on their behalf given the requirement for at least moderate dementia, but patients who resists participating in the study will not be enrolled).
• U.S. residents (i.e., individuals accessing the LBDA from outside the U.S. will be excluded).
• Patient with a clinical diagnosis of Dementia with Lewy Bodies (DLB).
• Patient with moderate severity dementia as assessed by the Quick Dementia Rating System (QDRS, with a score of > 12 suggestive of moderate dementia), and caregiver modified telephone interview for cognitive status (TICS-m) score of > 31 to ensure that the caregiver is able to reliably complete study visits. Diagnosis of DLB will be confirmed using the Lewy Body Composite Risk Score (LBCRS, score ≥ 3 consistent with DLB). The QDRS and LBCRS were chosen for inclusion criteria as they are validated caregiver-reported scales and can be used for both the clinical and the virtual cohorts.
• The participating caregiver must be the person providing the majority of the patient’s informal care (whether the individual with DLB is living at home or in a facility) and attending the majority of the patient’s clinical visits.
• The carepartner can represent any relationship with the individual with DLB (e.g., spouse, child).
• The type of relationship will be captured in demographic details to assess the impact of this relationship/role on end of life for the individual with DLB and the caregiver.
• The participating caregiver must remain the same throughout the study.
• If the primary caregiver changes (e.g., due to caregiver death), that dyad will drop out of the study.
• The location of the person with DLB (e.g., home, facility) will be monitored throughout the study for its influence on outcomes and its relationship with informal caregiver responsibilities.

Exclusion Criteria:

• Individuals < 18 years of age.