Attitudes About Alzheimer's and Dementia

~ by Carol Vartuli

September marks World Alzheimer’s Month – a time to raise global awareness about Alzheimer’s’ related dementia, its devastating impact on families, and its societal cost.

Since March of this year, our attention has been directed toward the COVID-19 pandemic and its impact on so many facets of our lives. Although it has claimed many lives worldwide, we hope COVID will be preventable in the future when a vaccine becomes available.

Not so with a perennial disease that afflicts 50 million people worldwide--Alzheimer’s—which is expected to rise to 152 million by 2050. Since Alzheimer’s Disease was identified in 1930, the cause remains unknown, no vaccine can prevent it, and no treatment has yet been found to stop its progression or the dementia that is caused by it.

This year, the confluence of dementia and COVID-19 has proven especially deadly.  “People with dementia are being disproportionately impacted by this pandemic and are in danger of being forgotten. Now more than ever we need to talk about dementia,” says Paola Barbarino, CEO of Alzheimer’s Disease International (ADI).

Kate Swaffer, Chair, Co-Founder and CEO of ADI’s partner Dementia Alliance International, adds that “in 2020, the rest of the world suddenly experienced what people with dementia and their families experience on a daily basis after diagnosis, such as isolation, distancing (from many family and friends), fear, anxiety and stigma.”

ADI, a federation of 100 Alzheimer’s associations around the world, sponsors international conferences and surveys, and each year publishes the World Alzheimer’s report. The newly-released World Report for 2019 is based on global surveys about Attitudes to Dementia.

Surprising Findings

According to the report, two out of three people believe there is little understanding of dementia in their countries because misinformation and stigma surround dementia globally.  

Despite ongoing efforts to educate the public about dementia, misinformation still exists. ADI’s survey of 70,000 people from 155 countries showed that one-third of people believe dementia is part of normal aging, rather than a disease. Many people think they will develop dementia in their lifetime.

Another staggering fact revealed in the study: 62% of healthcare practitioners believe dementia is a part of normal aging.

In reaction to that finding, Barbarino said, “Our message that dementia is NOT a part of normal aging, but a disease, is loud and clear, but it is clearly not getting through. We must work much harder on this.”

Stigma Still Abounds

Along with working harder to ensure that Alzheimer’s is understood as a disease, reducing the stigma also needs work.

People in the early stages of dementia are often reluctant to seek help because of the stereotypes and prejudice they fear.  A 60-year old interviewed in this year’s report summed it up: “People tend to run when they learn you have dementia.”

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Denial and not seeking help early may lead to more negative outcomes for the person. This self-stigma leads to avoiding social interactions, and not benefitting from dementia-appropriate services.

Public stigma still abounds. In the words of other interviewees:

• I used to be active in a club, but now I’m a non-person.
• Doctors talk to my spouse about me while I am sitting right there.
• Some work colleagues do not contact me anymore.
• I feel I cannot contribute at family gatherings because people get annoyed or feel uncomfortable.
• My neighbors avoid me.

Stigma also extends to caregivers and families of people living with dementia.

By default, stigma has a negative impact on research and research participation that could lead to a treatment breakthrough. Improving awareness, and debunking myths that dementia is a normal part of aging, is critical.

We can all play a role in fighting dementia and its stigma by increasing our own understanding of the disease during World Alzheimer’s Month.

Click to read the World Alzheimer Report.

For information about Alzheimer’s support and education programs, please visit  https://www.alz.org         

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The information in the above article is not intended nor implied to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.