Alzheimer’s disease is a progressive brain disorder that affects a person’s memory, ability to think and their behaviour. It is the most common form of dementia among older adults, affecting 342,000 Australians and at least 44 million people worldwide, creating a significant impact on individuals, families and communities. Currently, there is no cure for this disease, but researchers from around the world are working to develop a medication to slow or stop the disease. In order to develop these medications, researchers go through the rigorous process of clinical trials to ensure the medication is safe and effective. Without participants, these clinical trials are unable to occur.
A clinical trial is a research study conducted with human participants and often is used to evaluate new medical treatments, devices, or interventions. They are typically conducted in phases, with each phase designed to answer specific questions and gather information on the safety and effectiveness of the intervention being studied. These stages are:
- Phase 1: Testing the safety and dosages of the intervention in a small group of participants.
- Phase 2: Evaluating the effectiveness and further testing the safety of the intervention in a larger group of participants. This is where you begin to measure if there is a clinical benefit of the drug.
- Phase 3: These are pivotal trials designed to prove effectiveness and monitor the side effects of the intervention in an even larger group of participants.
- Phase 4: Monitoring the long-term safety and effectiveness of the intervention after it has been approved for use and on the market.
While understanding clinical trials and the phases might seem overwhelming to persons living with Alzheimer’s disease or dementia and their families, it is important to be informed and understand what participating in a clinical trial might offer them. There are many reasons to consider joining a clinical trial.
Here are the top four reasons to participate in a clinical trial for dementia:
- Taking an active role in your treatment course
Participating in a clinical trial can help individuals with dementia feel more in control of their situations and take an active role in managing their condition. Clinical trial participants may be the first to use a medication that could be beneficial or improve quality of life. As this is a research trial of a new treatment there is no guaranteed benefit though they may offer participants potential novel treatment, health assessments and imaging at no financial cost.
- Contributing to a future Alzheimer’s disease solution
While there might be potential personal benefits to participating in a clinical trial, participants are also contributing to a cause much bigger than themselves, as results from these trials can help researchers find a cure or better treatment options for this disease. Even a trial that shows that a treatment is not effective contributes to the knowledge about dementia.
Clinical trials also offer hope for future generations by paving the way for new and improved treatments for Alzheimer’s disease or other dementias or diseases.
- Quality care and monitoring during the trial
Participants in clinical trials receive expert medical care and monitoring throughout the trial period. During this process, they also learn more about their disease.
- Find community by helping others
Clinical trials can help both persons living with the disease and their caregivers find a community of people who are facing the same issues. These communities share information, provide comfort and serve as a reminder that they are not alone in the fight to end this disease.
For persons living with dementia and their families considering participating in a clinical trial, it is important to know where to start. Speaking to your doctor is always a good first step. Other resources to explore include going to Australian Clinical Trials or Australian Dementia Network, and Dementia Australia.
Finding a cure for Alzheimer’s disease is crucial as it affects millions of people worldwide and has a significant impact on individuals, families, caregivers, and communities. Participating in an Alzheimer’s clinical trial can potentially provide benefits to the individual, contribute to the advancement of medical research, and help find treatment options for those who suffer from the disease.