Sep 30, 2016

5 Reasons Why Every Caregiver Should Participate in a Clinical Trial

The only way to find a cure, or effective treatment, for Alzheimer's is through participation in clinical trials.


The role of caregivers in Alzheimer's care, dementia care and clinical trials.
By Bob DeMarco
Alzheimer's Reading Room

Right now, only a small fraction of Alzheimer's patients and caregivers are participating in clinical trials.

The lack of participation is a major factor that is delaying the identification of an effective treatment for Alzheimer's disease.

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This clinical trial is currently enrolling new participants.

The benefits to people living with Alzheimer’s are great when participating in a clinical trial.

The MINDSET Study for Alzheimer’s Is Open for Enrollment. 

Interested patients and caregivers can go directly to the study questionnaire.



In my opinion every caregiver should be investigating and considering participation in clinical trials for new Alzheimer's drugs. The benefits of participating in a clinical trial are often overlooked.

I did enroll my mom, Dotty, in a clinical trial for Alzheimer's disease. We both benefited greatly. Importantly, I learned exactly where my mother stood in terms of stage of the disease. Something that all caregivers want and need to know.

1. Imagine This

Your loved one is admitted to a clinical trial for Alzheimer's disease. As it turns out the experimental drug proves effective for the treatment of Alzheimer's. Imagine the legacy your loved one will be leaving - and the benefit to society. Imagine your own joy in knowing you participated directly in the cure for Alzheimer's.

While you are enrolled in the clinical trial you will receive expert medical care; and, you will be gaining access to new treatments that are not yet available to the public.


2. Significant Memory Testing

Your loved one will receive significant memory testing at the start and throughout the clinical trial process.

For example, the ADAS-cog (Alzheimer's Disease Assessment Scale-cognitive sub scale). This test is not administered routinely by your doctor.

ADAS-cog is designed to evaluate cognitive impairment in the assessment of Alzheimer’s. It can only be administered by a person with specialist qualifications and training. It is a very significant test.

You will get the benefit of knowing where your loved one living with Alzheimer's stands right now, and how they perform over the course of the clinical trial. This can be very enlightening.


3. A Thorough Medical Work Up

You will get a significant number of free medical tests, basically a complete medical work up and ongoing checkup during the course of the clinical trial.

All of these tests results are examined by a neurologist who has been qualified to participate in the clinical trial. And yes, you can ask the neurologist questions.

Keep in mind the neurologist has substantial knowledge and experience in working with Alzheimer's and dementia patients.

The information you will be receiving is invaluable; and, you get all the tests free of charge. These costs are paid by the sponsor of the clinical trial.


4. The Placebo Effect

Sometimes patients given a placebo treatment will have a perceived or actual improvement in cognition, a phenomenon commonly called the placebo effect or placebo response. This sometimes occurs due to the attention the patient is receiving while enrolled in a clinical trail.

I can tell you my mom did perk up during the clinical trial; and, did enjoy interacting with the people at the clinical trial office.


5. You Never Pay - It's All Free of Charge

You never pay anything out of pocket for a clinical trial that is approved by the FDA. Clinical trials are free to the participants. The clinical trial sponsor (usually a pharmaceutical company) is responsible for the payment of all costs. They will sometimes reimburse you for travel expenses.

If you are interested in participating in a clinical trial, I encourage you to do so. You might benefit from the experimental medication; and, you will be helping to advance the search for a cure or treatment for Alzheimer's disease.

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Bob DeMarco is the Founder of the Alzheimer's Reading Room (ARR).

The Alzheimer's Reading Room contains more than 5,000 articles; and, has been published daily since July, 2009.

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