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Jun 22, 2021
AARP Report Shows Disconnect Between Patient, Health Care Provider Views of Dementia
Data released today at the Milken Institute Future of Health Summit gives in-depth look at how adults and health care providers view a dementia diagnosis

En EspañolWASHINGTON – While dementia remains highly stigmatized, a new AARP report shows that health care providers overestimate the worry that adults 40 and older would feel if they had dementia. One in five adults say they would feel ashamed or embarrassed if they had dementia while seven in 10 health care providers think their patients would feel this way – a 50-percentage point-difference, according to the research.

“The harsh stigma dementia carries can overshadow the facts that a diagnosis is just part of a longer story, and that people can continue to live meaningful lives for years to come,” says Sarah Lenz Lock, AARP senior vice president for policy and Global Council on Brain Health executive director. “We found that most adults look to their health care providers for straightforward information on dementia, showing a great opportunity for improved lines of communication when it comes to brain health.”

The study revealed that adults can also benefit from learning more about the impact lifestyle changes have on the risk for cognitive decline and dementia. At least three-quarters of health care providers agreed that adopting brain-healthy behaviors can help with the symptoms of dementia.

“Risks for cognitive decline are much lower than most adults think, and there are many things you can do now to lower those risks as you age,” said Lock. “People should feel empowered to take control of their brain health by making lifestyle changes like being social, eating healthy foods, managing stress, exercising, getting better sleep and engaging their brains.”

Other key findings support the need to increase awareness about brain health as people age:

  • Half of adults believe it is likely they will get dementia – far more than will ever develop it – and a majority think they’ll experience cognitive decline as they age.
  • More Hispanic/Latino and Asian American adults, compared to African American and white adults, are worried their mental sharpness has already declined.
  • African American/Black adults and adults 70 and older perceive a lower level of stigma compared to white and Hispanic/Latino adults and younger adults.
  • Nearly half of adults 40 and older say they do not know if there are treatments available for dementia and just four in 10 adults are aware there is no cure for dementia.

The research was conducted in part to help inform the work of the Milken Institute Alliance to Improve Dementia Care, of which AARP is a member. The Alliance aims to transform and improve the complex health, community-based, and long-term-care systems that people at risk for and living with dementia must navigate. The Alliance and its members will work to address stigma within their spheres of influence. The research will be discussed at a Milken Institute Future of Health Summit panel titled: Dementia: Addressing the Stigma of America’s Most Feared Diagnosis.

“This research confirms that dementia is a highly stigmatized condition, which often hinders physicians and patients from communicating openly about memory concerns,” says Nora Super, executive director of the Milken Institute Alliance to Improve Dementia Care. “Our Alliance –which includes 70+ leading organizations, will share these results broadly with the goal of using this research to raise awareness and educate consumers, employers, health-care providers, and policymakers.”

Click here to download a copy of 2021 AARP Survey on the Perceptions Related to a Dementia Diagnosis: Adults age 40-plus. June is Brain Health Awareness month and additional resources are available at aarp.org/brainhealth, and try our Staying Sharp Brain Health Assessment, free through the end of June for AARP members, and information about brain health from the Global Council on Brain Health.

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About AARP
AARP is the nation’s largest nonprofit, nonpartisan organization dedicated to empowering people 50 and older to choose how they live as they age. With a nationwide presence and nearly 38 million members, AARP strengthens communities and advocates for what matters most to families: health security, financial stability and personal fulfillment. AARP also produces the nation's largest circulation publications: AARP The Magazine and AARP Bulletin. To learn more, visit www.aarp.org or follow @AARP and @AARPadvocates on social media.

For further information: Emily James, ejames@aarp.org, 202-434-2090

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