Richard Apple: Why I Volunteer for Alzheimer’s Clinical Trials

Richard will be one of our honored speakers at our Chicago Alzheimer’s Awareness Day event on Nov. 8th. Learn more and RSVP here.

I have an extensive family history of Alzheimer’s disease. In fact, I’m interpreting an unpublished book by an ancestor who came to the United States in the 1830s. His mother seems to have had dementia.

Both of my grandmothers died from Alzheimer’s. My dad’s brother died from Alzheimer’s. I was his primary caregiver. My mom died of Alzheimer’s. I was her primary caregiver.

I was a late teen and young adult when my grandmothers died. I didn’t understand it. The doctor said it was “hardening of the arteries” or something like that.


Grandmother Apple was a really confident, strong woman – well educated and active in her community. Then she became lost, confused at night, walking into the street. When she moved to nursing care, it was very sad for me. I told myself I would do what I could to fight Alzheimer’s when I got a chance. 

My father’s brother was next. Supporting him taught me how little the health care system knew about caring for individuals with dementia.

Then mom started showing symptoms in her late 70s. She had been taking good care of herself, walking five miles a day.  

She got in-home care and then eventually had to be moved to assisted living. I helped her move from Colorado to Illinois. That was an intense experience in communicating with someone with Alzheimer’s, because she was the navigator.

My uncle, her brother, was caring for his wife with dementia, but as soon as she died, he needed to move to assisted living. He had been a world-renowned trumpet player and educator. I remember his brilliance. Until he died last year, he still had flashes of coherence around music.

A few years after bringing my mom to Rockford I went to work for the Alzheimer’s Association as a care navigator, helping families adjust to the disease. That’s how I became very familiar with clinical trials and research. The individuals and families who I had the honor of meeting through my work are an inspiration for me. They faced a devastating disease with bravery and dignity. 

I retired about a year and a half ago to help care for our two grandkids. I decided that’s a good time to get involved in clinical trials, because of my family history and my knowledge of the dire need for effective treatment.

I found Great Lakes Clinical Trials and the Janssen study. They had just lowered their age range, which was perfect for me since I’m younger than 65.

First, I was screened for participation. I thought they would just need to know my family and health history and that would be it, but in fact there was a lot of cognitive testing, a PET scan, an MRI, blood work. They gave me lots of explanations of pros and cons. When they stuck me with the little needle for the PET scan, that’s when it struck me that I’m really going to find out how much I’m at risk for Alzheimer’s. After that, when they called me to come back in, I had some thoughts about not going, but then I reaffirmed in my mind that I wanted to know and participate in the research.

The doctor involved with the research told me I have elevated amyloid levels in my brain that put me at high risk for Alzheimer’s. The disease is working in the body for many years. I wonder how long it has been at these levels and how fast it is working.

I also wonder whether I’ll be on the placebo or if I’ll get the active medication. I was on a drug – or the placebo – for four or five months and then Janssen pulled it, which was a shock. I had expected to be in the trial for the long haul so I had to adjust my thinking. They don’t want to pursue anything if the side effects aren’t safe.

Great Lakes Clinical Trials has been great about keeping me informed. Because the test was double blind, they don’t know if I was on the drug or not.

Since then, I’ve gone through screening for a Novartis clinical trial. I’m on hold for that, but eager to continue.

You never know which study will be the one to tip the scales in the direction of progress. I feel like we’re on the cusp of a breakthrough. Of course, nobody knows which one will be the breakthrough.

People at Great Lakes Clinical Trials and Swedish Covenant Hospital were great. The team at Great Lakes Clinical Trials is always very respectful, appreciative and encouraging, and they are very sensitive. They’ve given me extremely good care. A couple of times they found my blood pressure was high and worked with me to have that evaluated by my general practitioner. I went on blood pressure meds and it’s better now.

I had a positive experience with the clinical trial. That’s why I want to do it again. I’ve encouraged a lot of people to volunteer for clinical research.

One positive thing is that you learn about yourself so you can have conversations with your family in case symptoms appear in the future. You can plan ahead.

If I happen to be in a study that ultimately is successful, I’ll be in on the ground floor of the treatment. If you participate, you are likely to get the drug sooner, even if you are on placebo during the study. It would be very positive to postpone or avoid what I went through with my family.

One of the things I’ve gotten out of this is if I have trouble with word-finding or directions, there is a natural thought, “oh my gosh,” but you have to reassure yourself that you’re not necessarily going to that place, like your mother. I’m concentrating on optimism and healthy living, and focusing on the moment, especially with my grandkids.

My advice for someone thinking about volunteering for clinical research would be to learn more about it. There’s information online, and you can talk to people at clinical trial sites about it. Look at the potential for bringing out a positive result from a devastating disease. It gives you a sense of purpose.

Richard will be one of our honored speakers at our Chicago Alzheimer’s Awareness Day event on Nov. 8th. Learn more and RSVP here.

Great Lakes Clinical Trials is part of the Global Alzheimer’s Platform Foundation’s GAP-Net network. GAP and GAP-Net are committed to disrupting clinical trial recruitment and study processes and to speeding up clinical testing cycles. GAP-Net sites share data, best practices, use of a central Institutional Review Board and common clinical trial contracts