AARP Study Shows Stigma Surrounding Dementia among Healthcare Professionals and General Public

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Intro: I’m Dr. Nathaniel Chin, and you’re listening to Dementia Matters, a podcast about Alzheimer's disease. Dementia Matters is a production of the Wisconsin Alzheimer's Disease Research Center. Our goal is to educate listeners on the latest news in Alzheimer's disease research and caregiver strategies. Thanks for joining us.

Dr. Nathaniel Chin: Welcome back to Dementia Matters. My guest today is Miss Sarah Lens Lock, senior vice president for policy at AARP. Miss Lock leads AARP's policy initiatives on brain health and care for people living with dementia, including serving as the executive director and creator of the Global Council on Brain Health. She is here today to talk about the results of a recent AARP survey that found both the general public and healthcare professionals harbor misperceptions about dementia. While the results of the survey show stigma, fear, and false information are clouding the truth about dementia, there's also an opportunity to inform both providers and the public about dementia and the known lifestyle habits that can help maintain brain function as people age. Sarah, welcome to Dementia Matters.

Sarah Lock: Thank you, Dr Chin. It's great to be here. Thank you for inviting us.

Chin: Well, you're welcome to be here, Sarah. Please call me Nate. To begin, this was a phenomenal survey and the findings are incredible. As a clinician, of course, I'm grateful because I think there's very relevant information for our clinic population, and as a researcher I'm jealous because of what you've been able to do here but I'm fascinated by how you accomplished it. So before we get into the key findings, can you share with us what went into making the survey and who actually completed them?

Lock: Sure. There are actually two different surveys that we fielded in March 2021. One was to a group of healthcare providers, 500 of them, all of whom have had some experience with dementia and diagnosis for dementia for older adults. The other was more than 3,000 adults, 40 and older, because we wanted to understand people who don't have dementia yet or are simply part of the general population. We wanted to know what they thought about dementia and what their fears were as they age. Quite a lot went into making the survey. It is based on Dr. Malaz Boustani's underlying research that he had done, I think, about 2008 about his patients and his clients in Indiana who had dementia. It was slightly different. It was a clinician study about people in his clinic or going to his clinic. We wanted to do a survey very similar but not exactly the same. We wanted a population that was representative of the United States population at large and big enough that we could do subsamples, so that we could make determinations about what African Americans think as opposed to say Asian Americans or Hispanic Americans. So we asked a lot of people a lot of questions.

Chin: I will say, too, as someone who has been involved in smaller survey studies, surveys are really hard to build in a scientifically sound way, and also to get the numbers that you guys got. 3,000 that really is something that you can do a lot with. I'm incredibly impressed with the physician part of it or the healthcare provider part of it because those are not easy people to get to fill out surveys.

Lock: Yeah that's right, and we were looking at a very special subset of health care providers. These are the people that we wanted to compare specialists to family practitioners because oftentimes people are getting diagnosed not by specialists, but instead by their general health care practitioners. That could be a nurse practitioner. It could be an emergency room healthcare provider, but we wanted to make sure that we had a good sample of family medicine, of specialists in geriatrics, in neurology and psychology so that we could compare what the different practices saw and find out say if geriatricians did things differently than neurologists.

Chin: Well so to begin, it does seem there's a misunderstanding among the general population about the risk of developing dementia. What did the survey find and how do people actually think about their own risk?

Lock: Well, that was one of the most surprising numbers, actually, coming out of the survey to me because there's a huge number of people who know someone with dementia and we had done previous surveys and virtually everybody knows someone who has dementia. But we wanted to know what part of the population had somebody close, family members or very close friends, and then what they themselves thought about their own risk. We found almost half of people thought that it was likely that they would get dementia or have cognitive decline. That was pretty surprising to us because when you look at the actual numbers of people who are likely to have dementia, it's probably closer to about 12%, maybe 15%. Now when you look at a subpopulation of people – and you know this – if they are much older, if they're say in their eighties they have a higher risk, right, if they've made it that far in life. But for people 40 and older, their risk are probably a lot smaller, probably four or five percent. So it was interesting to us to see the different age groups and their perceptions of whether they would have or personally experience cognitive decline or dementia, and those numbers were high.

Chin: And I think that's an important way to start because not only was there misunderstanding about risk of developing dementia, but then there's this stigma that happens and how people perceive those with dementia. Those two are very important to put together. It seems like stigma is very present and it carries a high level of it in our society when it comes to dementia. The survey showed that. So if you could speak to some of those key findings regarding stigma and dementia.

Lock: Yeah, we asked people to start off with, in comparison to other diseases, what they thought society felt about Alzheimer's disease. We specifically asked about Alzheimer's disease because a lot of people don't really know the differences between dementia and Alzheimer's disease – and I know you're a doctor you probably get this all the time. What's the difference between dementia and Alzheimer's? And what's the difference between cognitive impairment and Alzheimer's? Well our survey showed that people are not making a big distinction between those two things, but that both are highly stigmatized. When you looked at it in comparison to other diseases, 56% of our respondents considered it to be a highly stigmatized disease and 62% said that cognitive impairment was highly stigmatized. That was right up there with things like addiction, obesity, and mental illness. And what was fascinating to us about that is society tends to think about those kinds of diseases as if it's somebody's fault or almost as if it's to blame. So Alzheimer's disease was as stigmatized as cognitive impairment and it was slightly less than the stigma for mental illness, obesity and addiction. But if you looked at far more common diseases like heart disease or cancer, those were stigmatized only around 30%. So you can see that people think about these common diseases very differently than they think about diseases of the brain.

Chin: And the implications of that stigma are addressed in the survey, but I mean they're far reaching, from being evaluated to treatment options to speaking to other people about it. One of the things that comes up is fear; fear of the loss of autonomy, and in particular the loss of driving privileges and that being one of the bigger ones among adults who filled out the survey. Now as someone a part of the AARP, I'm sure you've heard that before. What do you make of that when it comes to the stigma of dementia and driving?

Lock: Well driving is key for many people, especially in rural communities. It's the key to their independence. It's the key to their quality of life. And so they fear it because it's a loss of Independence of where they go and when they go, but also it has implications for being burdens on family members and friends. So it's quite commonsensical when you think about it, that the loss of driving is wrapped up in that fear of loss of independence and burden on others. You'll see those highly – those are the reasons why these this disease – these diseases rather – are so highly stigmatized because they cause disruption in a person's life, because it really harms their quality of life.

Chin: I will often say to my patients – of course all of my patients are baby boomers for the most part – that driving is a very serious thing. I try to respect it as much as possible, but as someone who's not a part of the boomer generation, driving isn't as significant to the younger generations where they have other rideshare programs and there are other services. Some people don't even get their driver's license at the traditional sixteen years of age. I do wonder what will be the driving equivalent with each successive generation because what you're speaking to is universal, just this idea of loss and change and how that will impact people when they go to see their health care provider.

Lock: Yeah, you know, that's really interesting because I think the use of technology especially to get ride shares and I know AARP has partnered with organizations that use ride sharing as a way of maintaining independence. We've been working on transportation, so having good public transportation, for example, can relieve a lot of these problems. We're working in dementia friendly communities or to build dementia friendly communities and having transportation options that don't cause the problems and the fear is something that all communities can work on. Hopefully younger people are more down with that idea of – but we have to make sure those services exist because otherwise isolation and loneliness is a real downside and is a problem already for older people. Often it’s even greater for people with dementia. So, looking at that as a way of stopping some of the dementia stigma, real and good safe transportation could make a huge difference.

Chin: The results showed that stigma extends beyond the general population and into clinics, and so what key findings to the survey show about the clinicians who completed the survey?

Lock: Well, there's some great findings in that healthcare providers realize that there are things that people can do to reduce risk and improve quality of life. Everybody agrees, Clinicians and the general population. Early diagnosis is key. What wasn't so great is a willingness or a reluctance of healthcare providers to kind of tell the truth, sometimes, to their patients. There was a surprisingly large group of healthcare providers who said they don't always tell the truth to their patients. Maybe they're doing that trying to be helpful, but if you ask adults 40 and older if they want the information about their cognition, they'll tell you they do. This disconnect creates an opportunity for healthcare providers to kind of step up and feel more free to share this information that older adults can handle, and actually they want the truth right? What's that line out of the movie that Jack Nicholson did? “You can't handle the truth.” Well, I think adults need the truth and so health care providers should start thinking in that way.

Chin: And for our audience, it was pretty significant. The finding found 91% of adults would want to be told if they had dementia, but only 78% of clinicians reported always telling the truth. As you said, Sarah, perhaps that's because they're trying to do the right thing, what they think is the right thing in sparing people but you're absolutely right that that stigma and bias is not… it's not helping. In the end, people want to know what's happening to them. 

Lock: Yeah, and the sooner people find out about what's going on, the better, because then there are lots of things that people want to do with that time. So you know the reluctance of individuals to go to the doctor and ask for a diagnosis is something that we have to handle too because the sooner you find out, the better off you're going to be.

Chin: It seemed to me that one of the other parts of the survey showed that healthcare providers overestimated the shame and embarrassment that a person would experience with the diagnosis. I forget the numbers but it seemed like it was almost double what actually the general public thinks, but the survey found there are other perceptions that the clinicians overestimated as well.

Lock: Yeah I thought that that was fascinating. The percentage of adults aged 40 and older who agreed that they would be ashamed or embarrassed if they had a dementia diagnosis was 19%. Whereas healthcare providers, 69% thought that their patients would be ashamed or embarrassed. That is a huge difference and, again, points to the opportunity that healthcare providers have to change their own biases and their own stigma when it comes to dementia and kind of get over it. If you think that your patient had dementia, they're not so worried about whether they're going to be incompetent or be taken seriously. They do not think that they would give up on life. But if you look at what healthcare providers think, they think that their patients are worried that their employer is going to find out, that they're worried that their patient is going to be incompetent or feel incompetent and even give up on life. Those numbers are a stark contrast between what providers think and what adults 40 and older think. 

Chin: Now most adults don't want to be examined every year for dementia but they are more accepting of baseline screenings per this survey, but in the United States it is not recommended to screen for cognitive impairment or dementia unless someone reports actually having symptoms. My question to you is, from a policy perspective, does this need to change?

Lock: It does need to change, because we need to get people screened and evaluated. The point about it being a baseline versus an annual screening is an important one. It speaks to the partnership between a healthcare provider and the person. If people don't want to be screened we shouldn't be forcing them, but if it's presented in a different way and people understand the benefits of having a baseline. Because, really, dementia is about a change in a person's functioning fundamentally right? Yeah, there's lots of questions about what causes it and what you can do about it. But if it's affecting your daily life, that's when people get alarmed and that's when healthcare providers need to step in. You can't really tell that unless you've got some kind of baseline. So regularly having – you know nothing to be alarmed at – but every so often, every couple of years, if you can do a baseline then you can tell, without being scared of the test, you've got something to operate from. If people take blood pressure and you want to know if that's changed, why not take a vital on your brain and have people get familiar with talking to their doctor about these issues and create that relationship so that if something starts to go wrong both the healthcare provider and the person can act as a partnership and do something about it. It's really unusual that the problems that you come up with are dementia. Fundamentally, it's relatively rare when you look at the chances of getting it. To know that there are things you can do like evaluate your vitamin levels, check out your heart conditions; there are things you can do to continue to reduce your risk as you age. So isn't it important to have those conversations with your trusted healthcare provider to make a determination when it's time to get the more serious workup for dementia?

Chin: I feel like at the crux of early screening is early identification and diagnosis. The survey touched on the potential benefits of an early diagnosis. Could you share what the survey found, and what you see within the AARP, as true benefits of understanding very early on about what is happening to you?

Lock: Number one, if you can know that cognitive decline is not inevitable, that's a huge step. Knowing that, you can be proactive about your brain health and make a difference for yourself as you age. If you have dementia, if you have cognitive decline, then those very same things that you can do to reduce your risk, improve your quality of life. So this myth that there's nothing that can be done if you get a diagnosis of dementia, that could be worked on right from the beginning both in having a better health outcome but also in planning for your future. When you have an opportunity to make decisions about your healthcare, about your personal finances, about how you want to live the rest of your life; if you get an early diagnosis, you can be part of the conversation and choose how you will live the rest of your life.

Chin: Did the survey find any differences in the perceptions among different racial groups. You had a large number of potential  survey applicants or reviewers. Did they see any difference?

Lock: It's interesting. There wasn't a great deal of difference in the perceptions of whether your risk was high across different ethnic groups, except African Americans seem to believe that they are less of a risk than they actually are. To us, this was a big finding because we know from the population of African Americans, they are actually at higher risk for cognitive decline. Again, this presents an opportunity to have a conversation in African American communities to inform them of their risk and what they can do to reduce risk. Hispanics were actually very interested in taking steps to affect their risk. Again this is a good opportunity. They were, more than other groups, concerned about it and willing to take proactive steps. Asian Americans, on the other hand, were kind of interested or more worried than other groups, as were whites, that their cognitive functioning had already started to decline. So this is a great opportunity for those particular communities to have messages tailored to them so they can understand what they can do to reduce their risk and find out whether or not it's realistic about whether they should be worrying about what they expressed in this survey.

Chin: A part of that message is brain health, and as the creator and executive director of the Global Council on Brain Health I'd like to end by having you share with our listeners what the AARP is doing to spread the message of brain health, where they can find important evidence-based information. I guess even to begin with, how do you define brain health yourself?

Lock: You know that's really interesting, Nate. Nobody has asked me about how I define brain health. So I'll start with that, as a first. I think that brain health is the ability to enjoy your life and, even when you have cognitive impairment, sort of empowering yourself to enjoy yourself, your life, and the people around you. That, to me, is good brain health. One of the programs that AARP is most proud of is Staying Sharp. It is a program that shows people how to incorporate what we call the Six Pillars of Brain Health into their daily lives. Being social, engaging your brain, managing stress, ongoing exercise, restorative sleep, and eat right. Now we have a cheater acronym that's BE MORE. Each of the letters – B-E M-O-R-E – stands for one of our six pillars. Staying Sharp is a holistic program. It's fun. It's got some great videos and challenges and is an interesting way to stay engaged with good brain health.

Chin: Well, that's fantastic. Thank you for sharing that. I guess that's yet another reason to be an AARP member.

Lock: (laughs) Absolute and it’s a lot of fun. So AARP is working hard to change the perceptions we realize from the survey that lots of people think that cognitive decline is inevitable. We're trying to change that story because if you have a positive perspective about aging, chances are your experience of aging will be much better. We also know from this survey that there are people who are going to be able to be persuaded. They've told us they would be absolutely motivated to change their life if they knew these things worked, so we're trying to get out the evidence-based information that there are things that you can do; exercising, staying social, getting enough sleep, and engaging in mentally-stimulating activities, managing stress effectively. We're trying to get tools into the hands of people so that they can enjoy better brain health across their lifespan. For caregivers and people living with dementia, knowing that you can have a higher quality of life and improve the outcome even if you're living with dementia, is another critical thing that AARP is working to do is to try to improve long-term care systems so that people understand this is a chronic disease that most people can find ways to manage more effectively.

Chin: Well I'd like to end on that very positive note. Thank you, Sarah, for being on the podcast, for sharing the results of this incredible survey but really touching on those key issues of stigma and brain health. We do hope that, if there's another survey that comes out, we'll be able to share that message as well.

Lock: Well, thank you so much Nate. It's a terrific opportunity to talk with you and your listeners. I look forward to working with you in the future because I know that your programs out in Wisconsin are terrific. It's really nice to talk to you.

Outro: Thanks for listening to Dementia Matters. Be sure to follow us on Apple Podcasts, Spotify, Google Podcasts, or wherever you get your podcasts to be notified about upcoming episodes. You can also listen to our show by asking your smart speaker to play the Dementia Matters podcast. And please rate us on your favorite podcast app -- it helps other people find our show and lets us know how we are doing. Dementia Matters is brought to you by the Wisconsin Alzheimer's Disease Research Center. The Wisconsin Alzheimer's Disease Research Center combines academic, clinical, and research expertise from the University of Wisconsin School of Medicine and Public Health and the Geriatric Research Education and Clinical Center of the William S. Middleton Memorial Veterans Hospital in Madison, Wisconsin. It receives funding from private university, state, and national sources, including a grant from the National Institutes of Health for Alzheimer's Disease Centers. This episode of Dementia Matters was produced by Rebecca Wasieleski and edited by Caoilfhinn Rauwerdink. Our musical jingle is "Cases to Rest" by Blue Dot Sessions. To learn more about the Wisconsin Alzheimer's Disease Research Center and Dementia Matters, check out our website at adrc.wisc.edu. You can also follow our Facebook page at Wisconsin Alzheimer’s Disease Research Center and our Twitter @wisconsinadrc. If you have any questions or comments, email us at dementiamatters@medicine.wisc.edu. Thanks for listening.