Shaking the Stigma of Neuropsychiatric Symptoms with Dr. Jeffrey Cummings

Show Notes

Diseases and injuries that damage the brain can impact how we interact with the world and lead to significant and disabling behavioral and psychological symptoms, which are also referred to as neuropsychiatric symptoms. Here to talk about neuropsychiatric symptoms and the challenges they present is Dr. Jeffrey Cummings. Dr. Jeffrey Cummings is the Joy Chambers-Grundy Professor of Brain Science, an endowed professorship at the University of Nevada Las Vegas. He is the Director of the Chambers-Grundy Center for Transformative Neuroscience, a center devoted to using the tools of neuroscience and neurologic drug development to transform people’s lives.

Episode Transcript

Sue Peschin:

Hello, everyone, and welcome to This is Growing Old, a podcast from the Alliance for Aging Research. My name is Sue Peschin and I serve as the president and CEO of the Alliance for Aging Research.

Sue Peschin:

Diseases and injuries that damage the brain can impact how we interact with the world and lead to significant and disabling behavioral and psychological symptoms, which are also referred to as neuropsychiatric symptoms. And here to talk about neuropsychiatric symptoms and the challenges they present is Dr. Jeffrey Cummings. Dr. Jeffrey Cummings is the Joy Chambers-Grundy professor of brain science, an endowed professorship at the university of Nevada, Las Vegas. He is the director of the Chambers-Grundy Center for Transformative Neuroscience, a center devoted to using the tools of neuroscience and neurologic drug development to transform people’s lives.

Sue Peschin:

I’ve learned a tremendous amount from Dr. Cummings over the years. I’m really excited to have you with us today. Thank you so much for joining us.

Jeffrey Cummings:

Thank you, Sue. It’s my pleasure to be here.

Sue Peschin:

Let’s start out by explaining to some of the folks listening, what do you mean by neuropsychiatric symptoms?

Jeffrey Cummings:

Well, I think most people understand what psychiatric symptoms are. They are things like mood changes and depression, or sometimes there’s psychosis with false beliefs or hallucinations or anxiety. And all of these things can occur in the context of a neurological disorder like Alzheimer’s disease. And in that setting then, we called them neuropsychiatric syndromes because we assume that the neurological disease is making an important contribution to the occurrence of these symptoms.

Sue Peschin:

That’s a great way of explaining it. I don’t think I’ve ever heard that so simply and directly. So what challenges do neuropsychiatric symptoms present for individuals that have Alzheimer’s disease or another type of dementia, and also, what are the challenges for their loved ones, family caregivers, professional caregivers?

Jeffrey Cummings:

So, Sue, you can imagine what it’s like to have delusional beliefs, for example, that people are stealing things from you, and how distressing that would be to believe that the neighbors are coming into the garage and stealing your tools or that your wife is having an affair with a neighbor or something like that.

Jeffrey Cummings:

These are the kind of false beliefs that commonly occur. They’re extremely distressing to patients. They cause agitation. They cause depression. They cause anxiety, and of course they erode the quality of life of the individual.

Jeffrey Cummings:

They also have a very marked effect on the quality of life of the caregiver. So we know that this is so distressing to caregivers to see their loved one suffering, not only from the loss of memory that occurs with dementia, but also from these neuropsychiatric symptoms that commonly complicate the dementias.

Sue Peschin:

It’s always fascinating to me about how we rarely hear about neuropsychiatric symptoms. And I know that the reason behind that is because they’re highly stigmatized and oftentimes they’re dismissed as behavioral problems that the individual might be able to self-control or that caregivers should be able to deal with and not worry about. Why do you think that’s the case?

Jeffrey Cummings:

Well, I think for one thing, Sue, that even the caregivers themselves may not see the link between the symptoms and the dementia. So they see Alzheimer’s disease as a memory problem. Then they see that their loved one has depression and they say, “Well, he’s depressed because of the memory problem,” or hallucinations begin and he says, “Well, I can see my mother sitting there,” and of course the mother is deceased. And so the caregiver might say, “Well, he’s confused,” and again, attribute it to the memory problem.

Jeffrey Cummings:

So they may not even think about bringing it to the doctor’s attention when they go into the visit to see their neurologist or their general practitioner.

Jeffrey Cummings:

So I think it starts right with the caregiver. There’s confusion there. Then there is a lot of stigmatization, as you say. So there’s a reluctance to talk about these things. That, by the way, that we’ve discovered is very culturally determined. For example, Asian families in particular are very reluctant to talk about these kinds of symptoms in their loved ones. So there’s also a cultural dimension to understanding these symptoms as well. So there are many layers that tend to hide these symptoms and allow us to overlook them and make it difficult to study them and make it difficult to treat them effectively.

Sue Peschin:

I remember when I first got into working in the Alzheimer’s community, that there was a reluctance to associate it with mental health in any kind of way, that it was strictly neurodegenerative, and I’m not talking about neuropsychiatric symptoms with Alzheimer’s disease itself. And in some ways, that desire to keep that separation I think can help perpetuate the stigma a bit. And I’m wondering how you think we can end the stigma surrounding neuropsychiatric symptoms?

Jeffrey Cummings:

Well, first, let me agree completely with what you just said, that the Alzheimer community and caregivers don’t want Alzheimer’s disease seen as a mental illness. They want it seen as a neurological illness. So there is that reluctance to endorse the psychiatric symptoms because of that.

Jeffrey Cummings:

I think this is an educational challenge for all of us, that we really have to be alert to the presence of these neuropsychiatric symptoms. We have to educate caregivers and physicians about the relationship between neuropsychiatric symptoms and dementing disorders. So I think it’s a gradual process of raising the consciousness level about these symptoms, and I think that eventually is a way to work ourselves out of the current situation.

Sue Peschin:

Yeah, I’ve always thought when we talk about Alzheimer’s disease, we focus a lot on cognition, memory problems, and I think the stigma around that has gone down over the years, but there is still this piece that hasn’t seemed to dissipate that much. And that was one of the reasons behind why the Alliance for Aging Research recently created two new films on shaking the stigma surrounding neuropsychiatric symptoms. And you served as an expert reviewer, thank you very much. Can you talk a bit more about your background and experience in the field of neuroscience and maybe how you’ve seen it change over time?

Jeffrey Cummings:

My background even in college was about neuropsychiatry because I was fascinated with the mind and brain problem and how the brain is the physical platform on which the mind is situated. And then when I went to medical school, then becoming a neurologist became the way to continue to study that, although I continued to have a deep engagement with psychiatry and many psychiatry electives and continued the of study of psychiatry.

Jeffrey Cummings:

Then I did a behavioral neurology fellowship. And behavioral neurology was mainly focused on cognition, but there was a lot of interest in neuropsychiatry in the cognitive neurology community, and it eventually became a sub-specialty of cognitive neurology and neuropsychiatry because the two things were recognized to be so closely affiliated.

Jeffrey Cummings:

And then as I worked more with dementia patients after coming to Los Angeles at UCLA, I realized we didn’t really have a proper of interviewing caregivers in a standardized way. So I developed a neuropsychiatric inventory, which is a common tool for interviewing caregivers. And that allows us to quantitate these symptoms, and of course then that allowed the tool to be used in clinical trials. And now it’s widely used in neuropsychiatric clinical trials in Alzheimer’s disease, but also in many other dementias. And we developed a nursing home version because we realized that many patients who are resident in nursing homes have behavioral disturbances, but the questions have to be asked differently than a family caregiver would.

Jeffrey Cummings:

We developed the NPIQ, which is the brief version so that clinicians can use it essentially as a checklist and quickly look at these things in the author, and caregivers themselves can actually fill out the NPIQ.

Jeffrey Cummings:

Recently there’s the NPIC, which is the caregiver [inaudible 00:09:57], the expert clinician version of the NPI. It’s much longer, it’s much more detailed, but I think the quantification is better with that tool. So there’s been a lot of evolution over the years of the NPI, and that is sustained and enlarged by interest in neuropsychiatry.

Sue Peschin:

So the Alliance for Aging Research convenes Project PAUSE with the American Society for Consultant Pharmacists, and the pause in Project PAUSE stands for psychoactive appropriate use for safety and effectiveness. And it’s an ad hoc coalition of national organizations of providers, caregivers, families dealing with Alzheimer’s disease, a lot of folks who work in the long-term care space. And we advocate together on clinical regulatory and legislative issues in long-term care. What do you think are the main issues regarding care for people with dementia and neuropsychiatric symptoms in long-term care?

Jeffrey Cummings:

We don’t have well-defined non-pharmacologic interventions and we have no approved pharmacologic intervention, and we need both of those. We need better ways to calm patients down without using drugs. We need drugs that will help patients when we are not able to manage it with non-pharmacologic interventions.

Sue Peschin:

And we would add to that training, right? Everybody needs training kind of across the board so we all are on the same page from the get-go.

Sue Peschin:

So this is a question we ask all our guests. When you were a kid, what did you imagine growing old would be like?

Jeffrey Cummings:

Well, I guess my original conception of aging was a little like a balloon, and it starts very full of air at the beginning of life, and gradually the air goes out of it until it’s flat. But of course, I’ve realized what an erroneous conception that was. We’re trying to compress morbidity so that people have only a few years of disability before they die. We are all going to die and what we want the best possible life until it comes to and end. And in my particular commitment, I want to brain span that matches people’s lifespan so that their cognitive abilities are maintained throughout their life.

Sue Peschin:

So what do you enjoy most about growing older now?

Jeffrey Cummings:

Well, the great thing about my current situation is I get to do what I want to do. The university has been very supportive of my professional growth and continuing to be involved in research. And I am very involved with the students. I have both graduate students and medical students that work with me around studying drug development. That’s very exciting. We just published a paper today that has a medical student co-author on that. I’m very proud of that. I’m able to do at this point in my life what I want to do, what I’m passionate about, and what I want to continue to do. So I think good health, a good mental health, and a supportive environment is critical for all us regardless of the particular setting that that is in.

Sue Peschin:

Dr. Cummings, thank you so much for joining us today.

Jeffrey Cummings:

My pleasure. Thank you for having me on the podcast, Sue. I really appreciate it.

Sue Peschin:

Absolutely.

Sue Peschin:

Thanks to all of our listeners for listening to This is Growing Old. Our intro and outro music is City Sunshine by Kevin McCloud. Please stay tuned for new episodes every other Wednesday, and you can subscribe to us on Apple Podcasts, Google Podcasts, Spotify, or anywhere else you listen to podcasts. And please rate and review us if you’re enjoying the show. Thank you for listening to This is Growing Old and have a great day.

Sue Peschin:

(silence)