Abstract
Alzheimer’s disease (AD) and Lewy Body Dementia (LBD) are the two most common forms of dementia, together affecting over 7 million Americans. LBD tends to progress more rapidly than AD to nursing home placement and death. Many of the rating scales used to stage AD and LBD patients require significant input from caregivers, however we do not yet know if there are differences in how determination of progression is influenced by the relationship of the caregiver to the patient. Using a detailed online survey of caregivers (N=686), we created an estimate of disease progression using informant based assessments of cognitive, functional, behavioral, and psychosocial constructs, and used regression models to explore caregiver relationship to patient on rates of disease progression and perception of psychological well-being, adjusting for significant covariates. Moderation by dementia type (LBD vs AD) was also assessed. We found that patients cared for primarily by their adult children tend to progress faster compared to those cared for by spouses (OR slow progression=0.397; 95%CI: 0.243–0.646), particularly patients with LBD (βinteraction term=-0.875 (p=0.009). Adult child caregivers (vs. spouse) of LBD patients had higher levels of burden and depression and lower psychological well-being suggesting possible contribution to observed differences. In addition to the development of therapeutics to treat the symptoms of LBD in patients, our study supports the need to develop interventions designed to alleviate psychological stress and grief in caregivers, particularly adult children, which may negatively impact their direct care and possibly exacerbate rates of progression.