The Power of Collaboration to Help People with Hearing Loss: Connecting with the Dementia Action Collaborative in Washington State

Many people are unaware of relationship between hearing loss and dementia, or how hearing loss treatment may help some people with dementia. Dementia symptoms often mimic hearing loss symptoms—in fact, hearing loss is sometimes misdiagnosed as dementia. Hearing loss can make dementia symptoms worse, and even mild hearing loss can increase our risk of dementia.

HLAA-WA saw the need to help this population of people with hearing loss who were underserved and in need of improved care. HLAA-WA member and hearing loss advocate Diana Thompson launched HLAA-WA’s work in this area in 2014. We interviewed Diana to highlight her role with the Dementia Action Collaborative (DAC) and explain how and why building these types of community connections can help vulnerable people.

Q: Why is hearing loss an important factor in dementia care and policy?

Diana: Hearing loss can decrease the ability of a person with dementia to communicate with others and understand what is going on.  It’s important for someone to have a hearing test prior to evaluation for dementia. When someone with dementia is successfully treated with hearing aids or other hearing devices, this is helpful for their caregivers as well as the person experiencing dementia.

Q: How did you get involved with the Dementia Action Collaborative? 

Diana: In 2014, I began attending meetings of the group writing the Washington State Alzheimer’s Plan. I wrote and submitted a paper on hearing loss and dementia. I also mentioned hearing aids and the hearing loss-dementia relationship during the public comment period at the end of the meetings. I developed a friendship with a lobbyist who represented senior organizations who encouraged me to work toward getting Medicaid to cover hearing aids for adults.

Since  the Alzheimer’s Plan was released to the Washington legislature in 2016, Cheri Perazzoli and I have attended meetings of the Washington State Dementia Action Collaborative (DAC), the public-private partnership created to implement the Alzheimer’s plan. We’ve tried to help shape policies and recommendations relating to hearing loss assessment, treatment, and education. We requested hearing loops in order to hear at the meetings, as we both have a hearing loss ourselves. When the DAC meetings moved online, they provided captions for us. This not only provided our needed accommodation, but it showed committee members one of the realities of hearing loss—technologies are needed.  

Q: How have you, Cheri, and HLAA-WA helped shape dementia care and policy in our state?

Diana: Hearing loss needed to be mentioned more in the DAC’s guidelines and reports, so in 2017, I worked with members of the DAC who were writing a report for the Dr. Robert Bree Collaborative. I wanted to make sure that the final document contained multiple references to hearing loss and hearing aids and also mentioned personal amplifiers.

Also, the current Washington State dementia screening tools now include hearing loss assessment, and we suggested that handheld personal amplifiers like PocketTalkers can be used in some situations. The personal amplifiers aren’t substitutes for hearing aids, but they can help someone who doesn’t have hearing aids, or someone who has dementia but is uncomfortable with hearing aids.

Q: How will this help people with dementia and people with hearing loss?

Diana: In the latest 2021 DAC report, hearing loss is now included in two recommendations, one to improve education for family members about addressing hearing loss, and one to enhance case management staff training to assess and address hearing loss. The DAC’s Dementia Road Map, a Guide for Family and Care Partners, mentions hearing loss three times and hearing aids once. Because of our involvement with members of DAC, the Washington Department of Health website in their article on “Healthy Aging” now includes a paragraph on hearing loss.

Q: What’s on the horizon for 2022 and beyond in dementia care and hearing loss?

Diana: The ACHIEVE three-year study will release their results in early 2023, and the results are expected to show the effectiveness of hearing treatment (versus education control) on cognitive decline in older adults with hearing loss. For our continued and future work: I gave the DAC medical subcommittee information about OTC hearing aids, and I hope to give a presentation to the whole DAC on this subject, once the final OTC hearing aid regulations are adopted.

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