Do Alzheimer's disease patients want to participate in a treatment decision, and would their caregivers let them?

Purpose: This study was designed to examine the factors associated with the preferences of Alzheimer's disease patients to participate in a decision to use an Alzheimer's disease-slowing medication and how involved their caregivers would let them be in this decision. Design and Methods: Interviews were conducted with 48 patients in the mild-to-moderate stage of Alzheimer's disease and their caregivers. Results: Ninety-two percent of patients indicated they would participate in an Alzheimer's disease treatment decision, whereas 71% of caregivers thought the patient would participate. Half of the caregivers who indicated that their relatives would participate had relatives who did not have the capacity to make the decision based on a consensus of three expert psychiatrists. Patients' insight into their diagnosis and prognosis, and having less cognitive impairment, being a female caregiver, and being a spousal caregiver were all associated with the likelihood that the patient would participate in the treatment decision. Patients talked about wanting to be involved in the process of making a treatment decision, whereas caregivers talked about assessing whether their relative could participate in the process of decision making. Implications: Mild-to-moderate stage Alzheimer's disease patients want to be involved in making treatment decisions, and caregivers are generally willing to involve them. Caregivers of Alzheimer's disease patients talk about patient participation in relation to elements of the capacity to make a treatment decision. Clinicians can provide guidance and education to assist caregivers in understanding how to assess their relatives' abilities to make decisions and navigate the decision-making process.