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Perceptions About Dementia Don’t Match Reality

Both health care professionals and patients harbor misperceptions about dementia.

Misperceptions and stigma about dementia are hindering efforts to appropriately address brain-healthy behaviors among adults 40 and older, a recent AARP survey found.

The survey, which targeted both healthcare providers and adults age 40 and older in the general population, revealed that fear, confusion, and false information are clouding the truth about dementia. Significant disconnections exist not only in the perceptions of the general public, but also among health care providers.

There is a clear opportunity to inform both providers and the public about the real concerns surrounding dementia and the known lifestyle habits that can help maintain brain function as people age. Reassuring health care providers that patients do not hold as negative a view of dementia as they do was a major theme throughout the findings.

Fact Versus Perception

Numerous discrepancies exist between the realities of dementia and overall feelings about a diagnosis. Among the more startling findings is 48% of adults believe they will likely have dementia — far more than will actually develop it. According to a 2007 NIA-funded epidemiological estimate, the prevalence of dementia among individuals age 71 and older was 13.9%.

At the same time health care providers substantially overestimate the worry that adults age 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. 

These negative perceptions by healthcare providers carry over into the interactions they have with patients when dealing with cognitive function. Nine in 10 adults age 40 and older (91%) want to be told of a dementia diagnosis, but only 78% of providers said they always tell patients the truth.

Cognitive Evaluations Are a Doctor’s Call

Despite the stark differences between providers and patients, the public still relies on doctors to guide them about dementia. Doctors agree that they are in the best position to decide when to conduct an evaluation, with 49% of providers saying the decision should be up to the doctor.

Similarly, when asked what would prompt a person to be evaluated for dementia, a doctor’s recommendation topped the list. More than six in 10 (63%) adults age 40 and older said they would have their cognitive function evaluated if their doctor recommended it. A majority would also be convinced if they felt they were forgetting more than usual or someone else told them they were becoming more forgetful.

Still, many are hesitant to have regular cognitive evaluations. Most adults 40 and older either do not want an annual examination (27%) or don’t know if they want one (27%). 

That said, about half of adults want a baseline cognitive evaluation. But 74% of doctors think patients want one, so even the attitudes toward baseline cognitive evaluation reflect the wide gap between patients’ desires and providers’ perceptions.

Addressing Worry, Stigma 

Fears over loss of independence, emotional and financial suffering, and perception of how individuals with dementia or cognitive impairment are treated feed many of the stigmas around dementia. The biggest fear that adults have about dementia is the loss of driving privileges. 

Despite the concern, 81% of adults would want to know if they had dementia and 77% would want their family to know. Again, providers consistently overestimate the suffering adults may feel if they found out they had dementia.

Education Needed on Treatments, Prevention

There is a recognition by everyone that early diagnosis is beneficial, but most adults over 40 are not aware there are treatments available for dementia. More than half of adults do not know that dementia cannot be cured.

Still, healthcare providers underestimate the willingness of adults to engage in a healthier lifestyle to potentially slow the progress of the disease and the willingness of patients to participate in research. 

Few adults recognize the impact lifestyle modifications have on the risk for cognitive decline and dementia. So, while most adults are willing to modify selected brain-healthy behaviors, relatively few currently engage in brain-healthy behaviors all or most of the time.

Methodology

The report is based on an online general population survey of 3,022 adults age 40 and older conducted March 12–24, 2021 via Ipsos KnowledgePanel®. The report also included an online survey via a range of established healthcare panels conducted March 11–17, 2021. The general population survey lasted about 14 minutes while the interviews with providers took 10 minutes. The data in the general population survey were weighted according to CPS benchmarks including gender, age, race/ethnicity, income, census region, and the health care survey included the following mix of specialties: Family medicine/Internal medicine (n=296); Geriatrics (n=48); Neurology (n=84); Psychiatry/Psychology (n=115).

For more information, please contact Laura Mehegan at lmehegan@aarp.org or Chuck Rainville at grainville@aarp.org. For media inquiries, contact media@aarp.org.

 

Suggested citation:

Mehegan, Laura, and Chuck Rainville. 2021 AARP Survey on the Perceptions Related to a Dementia Diagnosis: Adults Age 40+. Washington, DC: AARP Research, June 2021. http://doi.org/10.26419/res.00471.001

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