Talking With Your Patients About Alzheimer’s and Related Dementias Clinical Trials

Why Talk About Participating in Dementia Clinical Research

Every disease treatment or prevention prescribed today is a result of clinical research and the human volunteers who made that possible. But many people are not aware of clinical research or do not understand what it is. By talking with your patients about clinical research, you can help inform them about ways they can make a difference in advancing better treatments and prevention strategies for themselves and for other people. In addition, through participation in a study, your patients may learn more about their disease and gain access to resources such as educational materials and support groups. They also may receive additional care and support, and possibly even treatments that are not otherwise available.

How To Talk With Patients About Dementia Clinical Research

When talking with patients about participating in clinical research, the following tips can help guide your discussion:

• Mention the possibility of a clinical trial after the patient and caregiver/family member understand the diagnosis of dementia and their care options. Try setting aside time at the end of the patient’s appointment to discuss clinical research.
• When possible, use a team-based approach for discussions: Patient navigators, support staff, caregivers, and family members should be invited to participate.
• Advocate for consideration of participation, rather than directly encouraging participation.
• Aim to facilitate a patient’s understanding of clinical research as well as how they might play a role in scientific discovery.
• Recognize concerns and respond to those clearly using easy-to-understand language. Patient-centered communication, such as open-ended questions and empathetic listening, may help.
• Be sensitive about the timing of the conversation and how much information you provide. Offer time for the patient and caregiver to process the information.
• Provide patients and family members with a printout or link to the Alzheimers.gov article: “Volunteer for Research: Alzheimer’s and Related Dementias Clinical Trials.”

What To Address: Benefits and Barriers

When discussing clinical research with your patients, try emphasizing some of the potential benefits of volunteering. These include:

• Receiving medical care and possibly new treatments that are not yet available otherwise
• Learning more about the disease and medical condition
• Gaining access to resources, such as educational materials and support groups
• Helping to advance better treatments and prevention strategies for others

Common barriers to participation can include mistrust or fear of research due to historical occurrences, fear about safety and unknown side effects of a potential new treatment, and perceptions of research as time-consuming or invasive. Consider the following points when addressing common concerns:

• Patients are carefully screened and recruited based on eligibility criteria. A patient will be fully informed of the study’s purpose, study procedures, time commitment, and any potential risks before they agree to participate. They may decline participation at any time.
• An authorized representative may be able to provide informed consent if the patient is not able to do so because of impaired decision-making.
• In many studies, participants may receive the placebo rather than the treatment, but all participants still receive the same standard of medical care and are important to study outcomes.
• Researchers are required by law to ensure the safety of study participants.
• Before conducting clinical trials in people, researchers first test the intervention for safety and potential problems in laboratories.
• There can be risks when participating in a clinical trial, such as negative effects of a treatment and more complex care. In addition, studies may involve procedures such as MRIs or lumbar punctures and may require study partners. Study personnel will explain what the study involves and can answer any questions about the intervention or procedures.
• Studies involve collecting various kinds of data from participants. Study personnel will explain how participant information will be used and protected.

Some patients may not be interested in participating in a clinical trial but may feel more comfortable taking part in an observational study. Observational studies do not include a treatment, but instead collect information from people and compare that data over time.

How To Get Involved

• Stay up to date on clinical research opportunities that are located nearby or available nationally. The Alzheimers.gov Clinical Trials Finder highlights trials and studies on Alzheimer’s disease, related dementias, and cognitive health. Search by location or keyword. For clinical trials and studies covering other areas of health and disease, visit ClinicalTrials.gov.
• Connect with a nearby Alzheimer’s Disease Research Center (ADRC). National Institute on Aging-funded ADRCs support both interventional studies testing new treatments and observational studies of memory, aging, and dementia. Many centers have email lists about currently recruiting studies or referral forms for physicians to use.
• Learn about registries and matching services, which collect basic information about people to help connect them with studies.
• Raise awareness about Alzheimer’s and related dementias research by viewing and sharing the information on this website and in the resources below.