Informing people that there are a variety of research opportunities that can benefit individuals with dementia is an important message to communicate. Both people with dementia and healthy individuals at risk for developing dementia may wish to sign up to participate.

Many kinds of research studies may be of interest to people with dementia and their families. Some studies focus on testing new treatments for addressing the symptoms of dementia or slowing disease progression (both drug and nondrug trials). Others investigate ways to prevent the onset of disease through lifestyle interventions. There are also studies that seek to improve people’s quality of life through psychosocial interventions.

Benefits of participation may include access to potential new treatments, access to medical care during the length of the study (often free of charge), the opportunity to play a more active role in one’s own health care, and the ability to contribute to research that might benefit others (Alzheimer’s Association, 2020).

“There are many benefits of clinical trial participation”

Someone on the primary care team should be prepared to inform individuals about the benefits, risks, and options for participation in clinical trials by:

  • Directly discussing realistic, goal-oriented options during an office visit as part of care planning activities (CPT code 99483 may be applicable). To facilitate the discussion, the National Institute on Aging’s 2-page infographic on clinical trial participation called Together We Make the Difference! Participate in Alzheimer’s and Related Dementias Clinical Research can be shared.
  • Making an internal referral to a study coordinator, if one’s organization is running a study that may be a good fit. Consider using the GSA Referral Form for this purpose.
  • Providing people and their families with the contact information for the National Institute on Aging’s Alzheimer’s Disease Education and Referral Center website, Find Clinical Trials. This free resource allows users to search for relevant clinical trials being conducted in their geographic area. 

When discussing potential options with patients, it may be best to avoid negative phrases such as “You don’t qualify for this trial,” that may be interpreted as a rejection. Instead, consider keeping the language positive such as “Let’s find a trial that’s a better fit.”

Opportunities to Participate in Research Studies

Several online resources can help to connect people with dementia with appropriate clinical trials, including:
  • National Institute on Aging: Alzheimer’s Disease Education and Referral Center has a Clinical Trials page for people to search for a local clinical trial.
  • ClinicalTrials.gov provides a free national database of ongoing clinical trials that can be searched by condition.
  • Alzheimer’s Association TrialMatch connects individuals living with Alzheimer’s disease, caregivers, and healthy volunteers to clinical trials that may advance Alzheimer’s disease research.

Refer | Approaches to Implement

Overview | The Referral Process | Conduct Regular Follow-up | Culturally Competent Conversations
Communicating about Clinical Trials | Refer References