If you or a loved one has Alzheimer’s and feel overwhelmed with hopelessness, participating in a clinical trial might be an opportunity to feel like you are doing something about it.
Clinical trials are a necessary step for the healthcare industry to find better treatments and understand new tools for the prevention of any disease. Better treatments can’t be identified without human testing performed on volunteers in the final stages of trials.
Today, there are over 250 trials underway that focus on Alzheimer’s disease and other dementias. Aside from funding, the recruitment and retention of volunteers is the greatest obstacle in making these trials happen.
Researchers need people diagnosed with dementia and individuals at risk of developing it. They also need caregivers and healthy volunteers with no evidence of the disease. Your participation in such studies helps scientists understand better the potential of new treatments and modes of prevention.
How Do I Find What Trials Are Out There?
The Alzheimer’s Association offers a free matching service called TrialMatch. Enter your personal information, and it provides a list of studies that might be a good fit. Learn more about TrialMatch here.
What are the Pros and Cons?
By serving as a volunteer in a clinical trial, you play a more active role in your own health care. You receive expert medical attention at leading health facilities, often at no charge. You have an opportunity to try novel therapies before they are available to the broader public. You also help others by making a contribution to dementia research.
Yes, there potential downsides. While patient safety is the paramount concern in every clinical trial, you may experience unpleasant or even serious side effects. Further, the treatment being tested may prove to be ineffective.
If you consider being a volunteer, the possible risks are detailed in the consent form for you and your physician to consider. Keep in mind that no new therapy ever advances to clinical testing unless researchers have strong evidence suggesting that it will at least be as effective as other treatments currently on the market.
Research shows that individuals who have the disease who participate in clinical trials perform better than those in a similar stage of their disease who are not enrolled in clinical trials. This happens even when the treatment under evaluation does not work. Researchers believe this benefit is due to the overall high quality of care provided during trials.
Every trial provides an opportunity for researchers to learn, even if the remedy being evaluated does not prove successful. Trials offer participants access to cutting-edge therapies and medical care related to the trial, as well as opportunities to talk to research staff.
About the Author:
Lorenzo Mejia and his wife, Mary Lynn Ryerson, are the owners of Acorn, a caregiver registry located in Chapel Hill.
They founded Acorn based on their experiences caring for his mom, who suffered with Alzheimer’s Disease. In 2013, he became a Qualified Dementia Care Specialist. In 2014, the Alzheimer’s Foundation named him the Dementia Care Professional of the Year in the United States.
Lorenzo is the founder of Dementia Friendly Orange County an effort to make local businesses more accommodating to people with dementia.
Lorenzo speaks often on dementia and the challenges associated with caring for loved ones. He has been interviewed by ABC News and National Public Radio. He is an advisor to Orange County’s OC-CARES Dementia Capable Community Project.