2020 Aphasia Awareness Survey

About the 2020 National Aphasia Awareness Survey

This 2020 aphasia awareness survey is our second national survey to determine the level of familiarity and understanding of aphasia in the United States. People with aphasia and their caregivers consistently report to the NAA that they confront not only a lack of awareness of aphasia, but also a lack of understanding of the condition.

For the 2020 survey, we collected data from 1,001 respondents, 25 and older, from across the US. We’ve highlighted some of the key takeaways below, including the fact that only 7% of respondents had heard of aphasia and could identify it as a language disorder. It’s for this reason, among others, that promoting awareness of aphasia and providing valuable resources to the community is central to the mission of the National Aphasia Association.

Where were our respondents from?

Key Findings

86.2% of people have never heard the term “Aphasia”

7% of people have heard of aphasia and can identify it as a language disorder.

The 13.8% of respondents (138 people) who had indicated that they had heard the term aphasia were then directed to answer another question to qualify their response. We didn’t just want to measure familiarity with the term aphasia, but awareness of the condition. The following question asked respondents to pick a choice that best describes aphasia.

The portion of the 13.8% of respondents who further correctly selected aphasia as a language disorder are those that we are considering “aphasia aware.” 71 respondents, or 7% of the total 1,001 respondents, made the correct selection and can be considered “aphasia aware.”

29.5% of people that are “aphasia aware” either have aphasia or know someone that does.

The 24 people who replied yes to this question, together with the 1 who identified as having aphasia, resulted in 25 of our respondents who were familiar with the term aphasia due to a personal experience of it.

However, after cross tabulating the data to eliminate people who did not correctly identify aphasia as a language disorder, that number was reduced to 21 for this question and 0 for those who said they were personally diagnosed with aphasia. 21 respondents, or 29.5% of the people that are considered “aphasia aware” had some sort of personal connection to aphasia. This is a shift compared to the data we received in 2016, which showed 34.7% of people who were “aphasia aware” had a personal connection to aphasia.

41.5% of people agree or give a neutral response to the idea that difficulties with speech indicates intellectual deficiencies.

41.5% of respondents agreed or gave a neutral response to the statement: “If a person has difficulties with speech, they also have intellectual deficiencies”. A significant number of people strongly correlate intellectual capacity with speech ability.

The prevalence of this idea can make interactions between people who have aphasia and those who are not “aphasia aware” particularly challenging.

71.2% of people made a connection between stroke and brain injury, and difficulties with communication.

71.2% of respondents made a connection between stroke and brain injury, and difficulties with communication. However, the overwhelming majority of respondents (93%) does not properly connect problems with speech to the term “aphasia.”

13.8% of people recall first hearing about aphasia from TV or a movie.

Movies and TV were listed as one of the most common ways that people remembered first hearing about aphasia. In 2016, newspapers, magazines and online publications topped the list of identified sources with 15.3% of respondents who were familiar with the term “aphasia.” 56.5% of aphasia familiar respondents had either heard of it from another source or couldn’t recall where they first heard of aphasia.

Below is a word cloud the highlights some of the answers we saw in the fill-in “other” category.

Survey Response Wordcloud 2020

In the last few years, we’ve seen aphasia show up in pop culture, in television shows like NBC’s The Blacklist and from celebrities like Emilia Clarke. If we think about the gap between people who connect brain injury and stroke with communication issues and those who are “aphasia aware,” we continue to see how important it is for aphasia references in popular culture to help raise aphasia awareness.

In the past year, 73 of the respondents who had heard the term aphasia recall seeing or hearing mention of aphasia in a newspaper, magazine (paper or online), on TV or on the radio at least once. That’s 52.9% of the 138 who had identified as having heard of aphasia.

Conclusion

This first reported aphasia awareness level of 7% is lower than we had hoped. Though people in the aphasia community know how serious a condition aphasia is, there is still a lot of work to be done with the general public to increase awareness of aphasia.

What can you do?

Share this survey with your friends, colleagues and networks.
Take 5 minutes to explain aphasia to someone that doesn’t know about it.
Get involved with your local aphasia group – or start one if there isn’t one in your area.
If you are a speech professional, become an NAA affiliate and get a listing in our national directory of services.
Reach out to your local media (newspapers, magazines, TV channels) with potential stories and news about aphasia, especially during the aphasia awareness month of June.
Stay updated on aphasia news and current events by signing up for the NAA’s newsletter and share with others via your social media channels.
Donate to the NAA at or to your local aphasia center.

If you have any questions on this survey, please reach out to us.

Methodology

The National Aphasia Association commissioned this 2020 aphasia awareness survey through Survata, a brand intelligence platform based in San Francisco. Survata studied 1001 consumers between March 02, 2020 and March 12, 2020 through their digital network. More information on Survata’s methodology can be found at studio.survata.com/am-recruitmentmethodology.

The data from this survey is meant to be representative of the U.S. population ages 25 and over with a 3.1% margin of error.

Raw Data Download

Below is a link to download the survey report and raw data from the National Aphasia Association.