Caregiver Outcomes of a Dementia Care Program

The University of California, Los Angeles Alzheimer’s and Dementia Care (ADC) program enrolls people with dementia (PWD) and their family caregivers as dyads to work with nurse practitioner dementia care specialists to provide coordinated dementia care. At one year, despite disease progression, the PWDs’ behavioral and depressive symptoms improved. In addition, at one-year, caregiver depression, distress related to behavioral symptoms, and caregiver strain also improved. Not all dyads enrolled in the ADC program appear to experience benefit. Although strain and distress remained stable or decreased for the majority of caregivers, a portion reported an increase in both. Semi-structured interviewed were completed with 12 caregivers over the telephone. Based on their answers seven themes were identified. These themes included: caregiver perception of being provided recommendations that did not match perceived care needs, existence of barriers to accessing care and utilizing resources, differing care needs based on stage of dementia, needing services not offered by the ADC, needing more education or support, received behavioral recommendations that the caregiver felt did not work, and dementia expert had poor rapport with caregivers. Despite having been identified as having had no clinical benefit from participating in the program, most caregivers did feel that the program was beneficial. This dichotomy highlights that perceived benefit for most of the interviewed caregivers was not captured with the formal instruments used by the program