This article is sponsored by The Michael J. Fox Foundation for Parkinson’s Research. In this Voices interview, Senior Housing News sits down with Susan Bogan, Senior Living Consultant with The Michael J. Fox Foundation, to learn about groundbreaking research connecting smell loss to brain disease, including Parkinson’s.
Senior Housing News: What career experiences do you most draw from in your role today?
Susan Bogan: I’ve been in the field of senior living housing and care for the past 30 years. Throughout my career, I’ve had the privilege of working next to and with some of the most visionary individuals impacting the senior living space. In this new chapter, I have been able to draw upon those relationships to help further the mission of The Michael J. Fox Foundation as we look to partner with senior living providers across the country.
There is a quote on the Michael J. Fox Foundation website that reads, “To me, hope is informed optimism.” And the website is indeed filled with tons of actionable information along with a sense of hope. Beyond name recognition, what differentiates the Foundation from other Parkinson’s focused organizations?
Bogan: The Michael J. Fox Foundation was founded by a patient — Michael J. Fox — so we are relentlessly focused on driving tangible improvements in diagnosis, care and treatment that patients can feel in their everyday lives every single day. And we won’t stop until a cure is found. Because of this, our team approaches everything we do with a heightened sense of urgency. We will know we have accomplished our goal when we can finally shut our doors forever.
Why does the Foundation view its development of partnerships with senior living organizations across the country and in Canada as such an important initiative?
Bogan: Parkinson’s is the second most common degenerative brain disease after Alzheimer’s, yet everyone gets their own version of the disease. It can cause movement and non-movement symptoms, including tremor, slowness of movement, mood disorders, thinking changes and autonomic dysfunction.
Because the average age of someone diagnosed with Parkinson’s is 60, we know many senior living organizations are grappling with how to provide a supportive environment for residents who have been diagnosed. We have the information, resources and experts to help.
In return, we hope senior living organizations and residents give back by participating in research studies to help further our findings. The more we learn the faster we can find a cure.
Tell us about the connection between brain health and loss of smell. What ultimately led to that discovery, and how would taking the Foundation’s signature scratch-and-sniff test allow senior living residents to monitor their brain health and wellness?
Bogan: One in two people over the age of 60 is living with smell loss, yet 70% of people don’t know until they are tested. That’s because it happens slowly over time, with seniors often noticing a failure in their taste first.
It’s not like the sudden loss of smell people might have experienced with COVID-19. In fact, 100% of people with brain-related diseases, including Parkinson’s, exhibit smell loss. And this smell loss may precede a Parkinson’s diagnosis by up to ten years.
The science is happening really fast. Our researchers are learning a lot about the disease and how to stop it, and we’re at an inflection point where we can apply a lot of those learnings to not only treat the disease, but prevent it.
Why is participation in research studies so important in the quest to cure Parkinson’s, or for that matter any brain disease?
Bogan: This study is important because it is focused on “looking upstream” to really connect the puzzle pieces on who gets Parkinson’s, who doesn’t and why. We’re learning how, why and when Parkinson’s begins. We’re calling on anyone over the age of 60 without a Parkinson’s diagnosis to participate. Everyone who participates in the Smell Test Study is contributing to our larger mission of ending Parkinson’s disease, and we’re grateful for anyone who makes the effort to help.
The different ways that Parkinson’s presents — is that why the Foundation needs so many individuals to participate in this study?
The more we learn the faster we can find a cure, so it’s really crucial to have those partnerships with senior living operators. People are a resource that we can’t fill with funding campaigns. We see people who join us in studies as partners and collaborators in our mission, and we’re really grateful for anyone who raises their hand to help, because we think we can do a lot.
What excites you most about the partnership between senior living communities and The Michael J. Fox Foundation?
Bogan: As we’ve been out talking to senior living community providers and residents, it’s amazing how many people have had their lives touched by Parkinson’s. And there’s such an outpouring of empathy for Michael himself. The first thing everyone asks is, “How’s Michael doing?” And they are truly concerned and interested in his well-being. It’s just wonderful.
The next thing they ask is, “How can we help?”
I think the sky’s the limit when it comes to the positive benefits for both senior living organizations and the Foundation. Whether it is access to information about brain health and wellness, learnings about new therapies or better understanding of care protocols, the possibilities are endless. One thing is certain: everyone is focused on helping people diagnosed with Parkinson’s and their families live better, longer lives.
Lastly, finish this sentence: “The top strategy that senior housing operators should employ in 2022 to best help their residents with Parkinson’s in 2023 is…”?
Offer to support the Smell Loss Study with residents, family members and associates. Go to mysmelltest.org/SHN or visit michaeljfox.org/seniorliving and do your part today.
Editor’s note: This interview has been edited for length and clarity.
The Michael J. Fox Foundation for Parkinson’s Research is leading the charge against Parkinson’s. To learn more about becoming a Michael J. Fox Foundation Senior Living Community Partner, visit michaeljfox.org/seniorliving.