Dementia Stigma: How to Stop Stymieing Solutions

This piece was originally published on ASA's Generations Now blog.

Abstract:
Misperceptions and stigma impact individuals and healthcare providers when adopting brain-healthy behaviors and addressing dementia. Fear of cognitive decline hinders open conversations and prevents people from accessing the care and services that could help them through earlier diagnosis and interventions. A successful strategy to enhance brain health should combat the stigma of dementia and drive systemic changes that make it easier for individuals adopt and sustain lifestyles and behaviors that support their brain health, reducing risks for cognitive decline and improving quality of life for people living with dementia.
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Rev. Dr. Cynthia Huling Hummel is an advocate, artist, and author living with dementia. When asked about her personal experience when being diagnosed with Alzheimer’s Disease, a common form of dementia, she told us that “stigma is a huge problem because so much is at stake with a dementia diagnosis. People are afraid to discuss brain health with family members. People are afraid to mention it to their care providers. People are afraid of losing their independence, losing their status, losing their jobs (Lock & Peterson, 2020).

Dr. Huling Hummel’s remarks, which echo feelings expressed by other adults we know living with dementia, provide a powerful, firsthand account of what it’s like to live with the fear of dementia. She articulated the barriers stigma creates, and how it stymies people from seeking the help they need from others. Her voice and others helped inspire AARP in 2021 to conduct nationally representative research surveys to learn more about the stigma associated with cognitive decline and aging. We gained a better understanding of the scale and scope of the problems that stigma engenders, which we share with you now.

Stigma About Cognitive Decline and Dementia Is Widespread Among Adults Ages 40 and Older
Findings from a survey of more than 3,000 adults ages 40 and older revealed widespread misunderstandings about brain health and a lack of awareness about the practical steps people can take to support better cognition (Mehegan & Rainville, 2021a). The survey showed us that the opinions we heard from individual advocates were indictive of how many more people felt about cognitive decline and dementia. The survey demonstrated that stigma surrounding dementia is extremely widespread.

Six in 10 of those surveyed (62%) agreed that society has a negative judgment of people with cognitive impairment. Only three conditions rated a higher level of stigma than dementia in the survey: addiction (87%), obesity (85%), and mental illness (78%). Majorities of adults in the United States believe that society negatively judges those who have cognitive impairment (62%) and those who have dementia (56%), making declines in brain health significantly more stigmatized than other common diseases associated with aging such as diabetes, heart disease, and cancer.

People Are Too Pessimistic About Their Future Brain Health
The idea of dementia sparks deep fear in most adults, yet worries of cognitive decline greatly exceed the risks actually faced, according to the research by AARP (Mehegan & Rainville, 2021b). Six in 10 adults believe cognitive decline is inevitable and a normal part of aging, and close to half of adults (48%) believe it is likely that they will get dementia as they age. These perceptions exacerbate the fear of aging and perpetuate negative stereotypes of people living with dementia. While close to half of adults believe they are likely to develop dementia, the reality is far fewer will. Most older adults will not experience significant declines in their cognitive skills serious enough to impact their daily functions.

According to the Alzheimer’s Association, the overall prevalence of Alzheimer’s disease is 11% among adults ages 65 and older, rising to 33.2% for those ages 85 and older (Alzheimer’s Association, 2022). According to a 2007 NIA-funded epidemiological estimate, the prevalence of dementia among individuals ages 71 and older was 13.9% (Plassman et al., 2007). People should understand that age-related changes in the brain, which can be disconcerting as we notice them, usually are not serious enough to cause real concerns, and as the Global Council on Brain Health (2022) has laid out, there are many lifestyle choices we can make to help reduce those risks. But our surveys showed us that we are swimming against the tide of current attitudes.

Healthcare Providers Stigmatize Dementia More Than the General Public
We also conducted parallel research among healthcare providers who regularly see older adults and diagnose dementia to determine if stigma might be affecting the care provided older adults (Mehegan & Rainville, 2021c). Interviews were among physicians, nurse practitioners, physician assistants, and psychiatrists/psychologists who evaluate people for the presence of cognitive impairment, wherein approximately 25% or more of their patients were ages 50 and older. The research reoresented a mix of specialties including: Family medicine/Internal medicine (n=296) Geriatrics (n=48) Neurology (n=84) Psychiatry/Psychology (n=115). Together these surveys revealed that fear, confusion, and false information are clouding the truth about dementia for the general public and healthcare providers. But most surprising were the significant disconnects between consumers’ and healthcare providers’ attitudes when it came to dementia stigma.

Healthcare providers often underestimate their patients’ desire to be informed of a dementia diagnosis, while overestimating the shame patients feel upon receiving such news, resulting in some providers not telling patients the truth about their diagnosis. An overwhelming majority of adults (91%) said they would want to be informed of a dementia diagnosis, but a smaller percentage of health professionals (78%) said they always reveal the truth to their patients. Healthcare providers substantially overestimated the worry that adults ages 40 and older would feel if they had dementia. While one in five adults (19%) said they would feel ashamed or embarrassed if they had dementia, a staggering seven in 10 providers (69%) said their patients would feel ashamed or embarrassed.

Swap the Paralysis That Comes From Stigma for Action That Empowers Better Brain Health
Contrary to these gloomy attitudes about the inevitably of cognitive decline and likelihood of having shame or embarrassment caused by dementia, adults can proactively engage in healthy lifestyle activities that have been demonstrated to reduce their risks. Healthcare providers can help people diagnosed with mild cognitive impairment maximize their abilities, shorten their period of disability and help patients improve their quality of life if they should develop dementia. Here are the ways that adults can counteract those feelings of vulnerability and foster a sense of empowerment by modifying their lifestyles to:

• Engage in the recommended amount of physical activity per week (Global Council on Brain Health, 2016)
• Get proper nutrition (Global Council on Brain Health, 2018a).
• Cultivate mental well-being, including managing stress effectively, strengthening one’s purpose in life, and accentuating the positive (Global Council on Brain Health, 2018b).
• Participate in socially engaging activities (Global Council on Brain Health, 2017a).
• Get enough quality sleep (Global Council on Brain Health, 2017b).
• Engage in cognitively stimulating activities (Global Council on Brain Health, 2017c)
• Maintain their heart health (making sure blood pressure, cholesterol, and weight are within normal limits) (Global Council on Brain health, 2020a).
• When faced with elective surgery, prehab (if possible) to minimize the chances of developing delirium while hospitalized (Global Council on Brain Health, 2020b).

Differences in Perceptions Among African Americans, Asian Americans, and Latino Americans About Stigma
While the attitudes about stigma relating to dementia and cognitive decline are largely similar among individuals of different races/ethnicities, there are some notable differences. Survey results suggest that earlier information to help people plan for living well with dementia may be even more appreciated among African Americans than the general population. For example, significantly more African-American adults compared to white adults agree that an early-stage diagnosis would give them more time to treat the disease better (83% versus 73%). In the same vein, significantly more African-American adults compared to white adults and adults overall want a baseline measurement of their cognitive function (62% versus 52%, 54% overall) and to be examined yearly for dementia (53% versus 43%, 46% overall) (Mehegan & Rainville, 2021d).

 When it comes to reducing risks, more African Americans agree that learning healthy habits can positively impact their brain health and would motivate them to have a healthier lifestyle compared to white adults (86% versus 79%). But the group that expressed most receptivity to learning about brain health interventions to lower risk? That appears to be Latino American adults. Significantly more Latino American adults compared to adults from other races/ethnicities report that they are likely to incorporate brain-healthy behaviors into their daily lives if they knew that each behavior may help them maintain their mental functioning/thinking skills. The only exception being willingness to engage in mentally stimulating activities, for which there were no significant differences between groups. (See Figure 1., below).

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Like African American adults, significantly more Latino American adults compared to white adults agree that an early stage diagnosis would give them more time to treat the disease better (79% versus 73%). When it comes to interest in cognitive evaluations, significantly more Latino American adults (56%) compared to white adults (43%), Asian American adults (43%) and adults overall (46%) want to be examined yearly for dementia. And significantly more Latino American adults compared to white adults feel their cognitive function should be examined yearly starting at age 50 (28% versus 12%).

Interestingly, despite the higher prevalence rate of dementia in their communities—or perhaps because of it—fewer African American and Latino American adults report (14% for both) feeling that they would tend to be ashamed or embarrassed if they had dementia, compared to white adults (20%) and adults overall (19%). Significantly fewer African American adults (16%) compared to adults overall (25%) and adults from other races/ethnicities (Latino American adults: 24%, white adults: 25%, and Asian American adults: 42%) think they would no longer be taken seriously (Mehegan & Rainville, 2021d).

More worrisome is that significantly more Asian American and Latino American adults are already worried that their mental sharpness has declined as they have aged compared with Black or white adults.

• 40%—Asian American
• 38%—Latino American
• 24%—African American/Black
• 26%—White

While we have outlined some of the differences in perceptions about attitudes among different communities, among all groups, there is clearly interest in learning more about how to support brain health and reduce risks for cognitive decline as people age. Overall, 81% of adults surveyed said they would be motivated to have a healthier lifestyle if it could slow the onset of dementia. With the evidence now becoming clearer that modifiable lifestyle factors can reduce rates of dementia by up to 40% (Livingston et al., 2020) we can engage and empower people to take actions that could reduce their risks.


Call to Action for Providers and the Public: Stop Stigma From Stymieing Solutions
There is a clear opportunity to inform providers and the public about the real concerns surrounding dementia and the known lifestyle habits that can help maintain brain function as people age. People are willing to take actions to sustain good brain health. Rather than thinking of dementia as something to be ashamed of and embarrassed about, let’s empower people by encouraging them to reduce their risks or slow the development of the diseases that cause dementia. Most adults surveyed said they exercise only occasionally or not at all. Yet of this group, more than four in 10 (44%) said they would exercise more often if they knew it would help them stay sharp. Better still, 85% of those who exercise frequently said they would work out even more often if they were aware of the benefits to brain health.

The stigma associated with a diagnosis of dementia or Alzheimer’s disease often leads to a delay in diagnosis and a lack of discussion about brain health with healthcare providers. Survey respondents agreed that early diagnosis would give them more time to plan for healthcare (86%), prepare advance directives or living wills (85%), and plan their finances (83%).

Reassuring healthcare providers that patients do not hold as negative a view of dementia as they do may help remove barriers to sharing clear and direct information and relieve some of the anxiety or reluctance some healthcare providers have in delivering a diagnosis of dementia. The surveys show that most people want to know the truth and to plan accordingly. Better communication between patients and healthcare providers can pay off in early diagnoses that enable people to plan, modify risky behaviors, and get the most effective treatments.

A large majority of healthcare providers knew that healthy lifestyle modifications such regular exercise, cognitively stimulating activities, and socializing with others helps with dementia symptoms (Mehegan & Rainville, 2021c). Even with a diagnosis of dementia, people can live meaningful lives for years to come. By approaching dementia more as a chronic disease that can be better managed through healthy lifestyle interventions, rather than continuing to stigmatize the condition as a hopeless diagnosis, we begin to empower the person to be an active participant in their future.

Let’s eliminate the cloud of misunderstandings and reluctance to openly discuss cognitive issues that stoke the stigma the public and healthcare providers associate with dementia. Once we do, we can move from fear and avoidance toward supporting adults’ ability to take the actions that can reduce their risks and that can make a difference in their quality of life if they or their loved one should experience dementia.
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Sarah Lenz Lock, JD, is the senior vice president for Policy & Brain Health in AARP’s Policy Research and International Affairs Department and the executive director of the Global Council on Brain Health in Washington, DC. She may be contacted at slock@aarp.org. Laura Mehegan and Chuck Rainville are senior research advisors on AARP’s Policy Research and International Affairs Department’s Health & Health Security team in Washington, DC. They may be contacted at lmehegan@aarp.org and GRainville@aarp.org.
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References

• Alzheimer’s Association. (2022). 2022 Alzheimer’s disease facts and figures. Alzheimer’s & Dementia; the Journal of the Alzheimer’s Association. www.alz.org/alzheimers-dementia/facts-figures
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