That’s why the National Alzheimer's & Dementia Patient & Caregiver-Powered Research Network has put caregivers, along with patients, at its center. The network is known as the Alzheimer’s PPRN, or patient-powered research network. It’s one of the PPRNs that are part of PCORnet, a PCORI initiative to harness the power of data and unique partnerships to conduct important health research faster, more efficiently, and at lower cost than was previously possible.

PCORI spoke with Alex Alexander, MPA, MBA, a co-principal investigator and project director of the network at the Mayo Clinic, and Meryl Comer, a caregiver, co-principal investigator, author, and former journalist, about the challenges of studying Alzheimer’s and other dementias, and what the network has to offer patients and caregivers.

Along with Ronald Petersen, MD, PhD, principal investigator of the Alzheimer’s PPRN, Comer is among the speakers at a June 21 Capitol Hill briefing on Alzheimer’s Disease Research with a Focus on Caregivers, sponsored by PCORI and UsAgainstAlzheimer's. Gail Hunt—President and CEO of the National Alliance for Caregiving and a member of the PCORI Board of Governors and the Alzheimer’s PPRN’s advisory council—will moderate the panel discussion at the briefing and provides an accompanying blog post.

PCORI and UsAgainstAlzheimer's Briefing on Alzheimer's Disease Research with a Focus on Caregivers
Tuesday, June 21, 2016  |  02:30 pm to 03:30 pm ET  |  Dirksen Senate Office Building, Washington, D.C.

What is your personal experience with Alzheimer’s disease or other dementias?

Meryl Comer: I’ve spent the last 20 years at the bedside as a caregiver for my husband, who was diagnosed with early-onset Alzheimer’s at the age of 57. For the past 10 years, I’ve also cared for my 96-year-old mother, who has the more classic age-related Alzheimer’s. I care for them both at home.

In my case, l was forced to leave my career to take care of my husband. Even though doctors warned me “he was too aggressive to come home,” no facility would take him. Everyone assumes the caregiver is well. But the intensity of 24/7 care, year after year, jeopardizes our health, too—not to mention the financial burden that bankrupts many families. And if the caregiver gets sick, there is no plan B.

Alex Alexander: My mother back home in India—she was a doctor, very accomplished. The past five to eight years, she has had complete dementia. It’s very intense and very personal.

Everyone I have asked reports a personal connection to Alzheimer’s or dementia, or a fear that we don’t want this to happen to us. It’s a very powerful disease, and there’s no cure.

Meryl Comer: No doctor wants to present a patient with a diagnosis of Alzheimer’s disease. If you can’t treat it, why tell them? Unfortunately, that still goes on today. Fifty percent of Alzheimer’s and other dementia patients go undiagnosed, and their symptoms are often misinterpreted as mental illness. My husband was misdiagnosed for four years with everything from stress to Lyme and mad cow disease. Not knowing what’s happening to a loved one tortures families. It’s time to end such paternalism in medicine.

What are some of the challenges of studying Alzheimer’s disease?

Meryl Comer: At a certain point in disease progression, patients are not able to report out their own preferences. Their short-term memory is compromised and recollections are lost. They are unaware of how they contradict themselves on simple choices that fluctuate from one moment to the next. At that juncture, the caregiver is valuable as the surrogate for patient-reported outcomes.

Our network has a unique opportunity to examine nuanced questions such as: Are we prematurely taking away the patient’s prerogative by answering for them? In a clinical setting, when is it appropriate to interview the patient-caregiver dyad without creating bias? When is it not? No caregiver wants to take away the last hurrah of a loved one. The goal is to protect dignity and support independence as long as possible.

Is that why the Alzheimer’s PPRN puts so much emphasis on caregivers?

Meryl Comer: Classically, our voices have been engaged only as informants about patients. Researchers are missing a great opportunity to engage caregivers more proactively around recruitment and retention for clinical trials.

No matter what I do for my husband or my mother, Alzheimer’s disease will win at home. Why not let us help capture data between clinical visits? Validate our observations instead of dismissing them. When it comes to Alzheimer’s, the clinic is an artificial setting. Test what happens when the patient-caregiver dyad is studied virtually and “in place.” Let us share the spirit of research with the knowledge that we are helping other families and the next generation.

Our PPRN has a unique opportunity, using mobile technologies, to longitudinally track both patient and caregiver cognitive vitality. The resulting data could inform clinical research and pinpoint interventions that improve the quality of support services to keep caregivers well.

Alex Alexander: We are building a caregiver portal to draw on caregivers’ collective strength and to give back to them. It will have articles and other resources, ways for caregivers to connect to each other, links to local communities, and perhaps interactive online activities.

How can PCORnet’s network approach help with Alzheimer’s disease research?

Alex Alexander: We have a registry of patients, and we try to gently move them toward clinical trials. Everyone is chasing a cure. When there are treatments to test, we will have a population that clinical studies can draw on for participants.

And by then we will have so much data. If we could identify a population of people who may be predisposed to develop dementia, let’s say based on an algorithm, researchers could test out some preventive strategies, like mind exercises.

Finally, the sense of connection that you get by joining the network is enormous. We have another PCORnet network here at the Mayo Clinic, a Clinical Data Research Network, and the synergy is tremendous. I can always connect people, one to the other, or to other networks. The synergy of PCORnet is not 2 plus 2 equals 5, it’s more like 2 plus 2 equals 8. It’s very powerful.

If you are a patient or caregiver, please join us! We welcome one and all, but we are particularly interested in involving patients and caregivers who are African American or Latino, as these groups are disproportionately affected by dementias and underrepresented in research. For more information—whether you are a patient, a caregiver, or a researcher interested in collaborating—please join our June 28 webinar.

Related: Caregivers Can Make Critical Contributions to Alzheimer's Research

The views expressed here are those of the author(s) and not necessarily those of PCORI.