Caregivers' preferences for the treatment of patients with Alzheimer's disease

Objectives: To learn caregivers' preferences for the treatment of AD with a disease-slowing therapy, and to identify relationships between these prefe rences and the characteristics of caregivers and patients. Methods: A struc tured interview with 40 caregivers of patients with AD. Preferences were me asured for an AD-slowing medicine with the benefits of a gain in survival a nd a delay to nursing home placement (NHP), and risks of three degrees of s everity of GI bleeding. Results: Using a six-point scale ranging from "not at all important" to "extremely important," the median rating of the import ance of survival as a treatment benefit was "very important" and of a delay to NHP was "extremely important." Fifty-five percent of the caregivers ide ntified a benefit more important than these two benefits. Qualitative data showed that caregivers' reasons for these preferences featured the importan ce of patient quality of life, and the preservation of patient cognition an d function. Bivariate analyses showed that increasing importance of the ben efit of survival was related to higher assessments of the patient's health and quality of life, and lower ratings of the caregiver's experience of bur den. In order to slow disease progression by 1 year, 25/38 (66%) of caregiv ers would accept some risk of death from gastrointestinal bleeding. Regress ion models showed that risk tolerance was higher among caregivers who were working, adult children caring for early stage patients or from families wi th an history of dementia. Conclusions: Caregivers generally are willing to tolerate notable amounts of risk to slow AD progression. Factors that desc ribe the caregiver's experience and perception of the patient and the patie nt-caregiver relationship influence how they want to treat the disease. Thi s information may be useful for decisions about how to study and prescribe AD treatments.