Over the last few months, Adira was visiting support groups in our region to hear from people living with neurodegenerative diseases and their caregivers—ensuring the point of view of people living with neurodegenerative diseases is what shapes the trajectory of our work bettering lives for people with neurodegenerative diseases. Because the required physical distancing to limit the spread of coronavirus means most groups can no longer meet in person (though many virtual meeting options do exist), we are examining different ways to collect the same quality of information.

In the meantime, Adira Programs Manager Lauren Ruiz, who designed the project, answered some basic questions about its goals and what she and Adira facilitators are discovering.

What is the goal of this project?

Programs Manager Lauren Ruiz

The goal of the support group listening tour and survey is to deliver on one of Adira’s central values, which is to involve people living with neurodegenerative diseases and their caregivers in determining the priorities of Adira’s grant making activities.

When Adira Foundation was created, it was with this in mind: People living with neurodegenerative diseases and their caregivers know best their biggest fears and everyday obstacles. Adira wants to fund solutions that address patients’ and caregivers’ biggest fears and everyday obstacles. Adira can achieve these goals by listening to patients and caregivers. So, that’s what we’re doing.

What have you heard that’s surprised you?

I honestly have been quite surprised by the seemingly low utilization of therapeutic interventions. What I mean by that is, many people I spoke with were not taking any drug treatments for symptoms of their disease (drugs to treat symptoms are different from disease-modifying therapies which stop or slow the progression of symptoms). I read almost daily headlines about this or that perceived breakthrough in neurodegenerative disease research and the FDA fast-tracking related drug approvals. I almost feel naïve for believing there is this menu of effective and accessible treatments for daily symptom relief when that may not be translating into reality for many.

Have you heard anything that didn’t surprise you?

Long-term care is expensive, it is complicated, and most people wait way too long to start planning for it. I’ve worked in health care for a long time and my professional background is significantly rooted in health insurance education, so unfortunately this one was of no surprise to me.

How would you describe the experience of talking with and meeting these communities?

Literally any emotion I choose could remind me of many instances throughout this experience—joy, surprise, anger, disbelief, relief, sadness, empathy, regret, awe, fear. I laughed alongside a caregiver having a moment of levity by turning a discussion on the many financial benefits of divorcing her husband into a light-hearted joke, and then immediately felt sadness, recognizing seriousness underneath that joke, along with a really disappointing reality about the lengths some are driven to just to get by. I felt disbelief when I heard from a patient how they discovered their long-time neurologist had left their practice—by calling to confirm a next-day appointment and being given the name of a different doctor she would see moving forward.

lauren setting up pens for meeting
Lauren sets up for a support group visit to survey people to inform program development.

I am in awe of every caregiver I have spoken with so far. They hear some disheartening messages over and over, yet they persist. A gentleman shared with me that others typically see his wife, diagnosed with Parkinson’s disease for 20 years now, as a lesser version of herself—as someone who simply needs to be taken care of so he can enjoy himself. He whole-heartedly rejects that idea. His wife may not be able to do many of the things she once could, but he sees she is still the same person. He shared story after story of moments of his wife’s wit shining through when people actually listened to her. His biggest complaint isn’t that he doesn’t have time to do things for himself, it’s that no one is making opportunities for him to do things with his wife that they can both enjoy.

I love meeting with people from these communities. I remember their names and research the things they talk to me about. Sometimes I’m lucky enough to have a valuable resource I can pass along through their support group leader after the session. I care about these people without having met them so every opportunity to have a face-to-face is really a good day for me.

How long before you’ll have results?

I see this as a continuous learning process, so I don’t want to equate results with the end of the listening tour, but we recognize that having a good conversation is not enough. We want to show real impact. Right now, we are on track to complete our 100th survey by the end of April. Our timeline will likely change as a result of groups canceling to help prevent the spread of COVID-19. But we’re considering some online options to keep things on track. We’ll use that data to publish initial results, so that report should be available by June.

What will Adira do with those results?

Adira will use the results of the listening tour survey alongside other published neurodegenerative disease needs assessments to launch our 2020 Grants Program. The areas Adira prioritizes in our 2020 Grants Program will reflect the top priorities expressed by patients and caregivers. Organizations that propose solutions to the issues identified in our report will be able to apply for grants from Adira Foundation.

What can people (people with ND, caregivers, partner organizations, etc.) do if they want to get involved?

Participate in the listening tour

If you are a support group leader or group member living in the Virginia, Washington, D.C., Maryland region and would like more information about how your group can participate in Adira’s survey contact Programs Manager Lauren Ruiz at lruiz@adirafoundation.org.

Share your story with Adira

If you care about neurodegenerative diseases tell us why. We believe more people have connections to neurodegenerative disease than is understood and that each person’s story of how neurodegenerative disease impacts them is wholly unique. Share your story publicly by participating in Adira’s social media awareness campaign #Heart4ND or visit our website and talk with us directly on our Submit a Story form.

Join a disease registry

Adira is proud of our efforts to engage directly with people living with neurodegenerative diseases and their caregivers but we recognize we are not the only ones doing this type of work. A disease registry exists for your disease. Information you can share there about your disease symptoms and journey will contribute to new treatments, expanded support resources, health system improvements, and possibly a cure.