We are a non-profit organization that provides hope and help to individuals and families living with dementia and information about how to live proactively with dementia. We offer services and peer supports including three weekly online discussion groups, two monthly podcasts, an online Resources Center, a national Speakers Bureau and other services. All DAA efforts and activities are shaped and informed by individuals living with dementia. We are a charitable 501 (c)(3) organization.
”We don’t want to just survive. We want to live and thrive.”
Goals
Educating about the negative effects of stigma and misperceptions.
Empowering and encouraging a proactive attitude for living with a chronic condition.
Championing strategies and accommodations for changing cognitive abilities.
Promoting person- and relationship-centered support practices.
Creating pathways to connect and engage with others living with dementia.
Identifying beneficial technologies.
ACCOMPLISHMENTS
DAA celebrated its 25th anniversary!
Cynthia Huling Hummel, Brian Van Buren and John Richard Pagan from DAA served as advisors for the National Academies of Sciences, Engineering and Medicine’s (NASEM) Reducing the Impact of Dementia in America decadal study.
DAA also served as advisors on a second NASEM study, Care Interventions for Individuals with Dementia and Their Caregivers.
Hosted a national showing online of SPARK, a documentary from the filmmakers of Robin’s Wish and the Lewy Body Dementia Association, about Robin Williams’ undiagnosed Lewy body dementia.
In response to the isolating effects of Covid-19 safety restrictions, DAA launched two new weekly online discussion programs, Drop-In with Dr. Susan and Faith, Hope & Love, and a daily virtual engagement programs.
Laurie Scherrer and Cynthia Huling Hummel, two DAA Advisory Board members living with dementia, served on the planning committee and spoke at the National Institute on Aging’s national virtual dementia Summit.
Partnered with Brighthouse Financial on a national virtual speaker series of 42 events to educate financial advisors around the country about living with dementia. One event included a virtual cook-off with the Food Network’s celebrity chef, Alton Brown, and DAA Advisory Board member, Mike Belleville.
Convened a virtual big tent discussion with key national stakeholders about the trauma prolonged social isolation due to Covid-19 safety restrictions were having on residents of residential care communities.
Convened the second DAA conference in Atlanta, GA that brought together hundreds of diverse stakeholders committed to supporting a better society in which to live with dementia.
In partnership with The Eden Alternative, finalized the writing and development of Raising the Bar Practice Guide for Assisted Living Communities – the first guide in a series of five setting-specific operational guides. The series provides the first detailed, how-to tools to support person- and relationship-centered dementia practices for providers of assisted living, memory care, home care, adult day, and nursing homes.
Developed and published online, What Matters To Me (https://daanow.org/resource-center/resources-center-apps/), a free tool to collect individualized information about how best to support and provide accommodations for someone living with dementia.
Hosted a Dementia Arts Fest in Atlanta, GA of artworks created by individuals living with dementia to showcase their many abilities, creative talents and the capacity for vibrant expressions while living with dementia.
Hosted the Living Well Tech Expo as part of the 2019 DAA conference to showcase some exciting technologies and innovations that are beneficial to individuals and families living with dementia.
Two monthly podcasts were launched, This Dementia Life and Professional Insights as well as a weekly online discussion program, Dementia Discussions.
Individuals living with dementia were included for the first time at prestigious events including at The Milken Institute’s Future of Health Summit and the American Academy of Neurology’s Brain Health Fair.
The DAA launched a new service, ON THE MARK, for companies and organizations to be able to access individuals and care partners living with dementia to better inform and shape their dementia-related services and products.
The DAA’s Advisory Board members produced Living Beyond Dementia, a 5-minute video about the issues surrounding how diagnoses of dementia are delivered. The video was submitted to the American Academy of Neurology’s 2018 Neuro Film Fest.
The DAA’s Advisory BaThe DAA partnered with Community Stations, a PBS affiliate in Virginia, to produce Revolutionizing Dementia Care, an hour-long documentary about how using person- and relationship-centered practices best empowers and enables people living with dementia.oard members produced Living Beyond Dementia, a 5-minute video about the issues surrounding how diagnoses of dementia are delivered. The video was submitted to the American Academy of Neurology’s 2018 Neuro Film Fest.
Hosted DAA’s first conference, Re-Imagine Life with Dementia, in Atlanta Ga that brought together hundreds of stakeholders wanting a better world in which to live with dementia. The conference was the largest gathering of speakers living with dementia.
Published the song, Living Beyond Dementia, whose music and lyrics were created by Laurie Scherrer, who is living with dementia.
Published a booklet for family and friends of individuals living with dementia titled, Living with Dementia: An Unexpected Journey, that won a 2017 Mature Market Media award.
Published a consensus white paper, “Living with Dementia: Changing the Status Quo,” that addresses the significant and serious societal issues impeding the well-being of people living with dementia and their ability to live fully with a chronic health condition.
DAA Advisory Council Member Dr. Alexander “Sandy” Halperin was awarded the Senator William & Ellen Proxmire Award in Washington, DC for his exceptional dementia advocacy efforts.
Launched “Caring Community Conversation” events in Washington, DC, Atlanta, GA, and Tulsa, OK to initiate friendly conversations among diverse dementia community stakeholders, including individuals living with early and moderate symptoms of dementia and care partners, about LIVING with dementia to enhance understanding and address misperceptions and stigma.
Partnered with the Area Agency on Aging of North Florida to hold discussion groups and pilot test the “Caring Conversations Toolkit” with individuals living with dementia and their care partners.
Invited to become a member of the Global Council on Alzheimer’s Disease.
Established the DAA’s Scientific Advisory Board.
Conducted the “National Survey of Resource Priorities & Preferences among Individuals Living with Dementia and Care Partners” to learn most effective ways for people to access resource materials
“Living Fully with Dementia: Words Matter “ – published a paper online to bring attention to an important topic, the words and language society uses for and about people living with dementia, that have the effect of being diminishing and discriminatory. The paper features commentaries from partners living with dementia.
Awarded Picker Grant to develop and test effectiveness of the DAA website
Established the DAA’s Advisory Council of individuals living with dementia symptoms to provide insights and guidance from the perspective of their lived experience.
Released the public service video announcement, “Person-Centered Matters” to wide acclaim.
Partnered with the University of Buffalo’s Institute for Person-Centered Care to conduct a national survey of Americans to identify their dementia needs and priorities. The project was funded by The Retirement Research Foundation.
National survey findings were presented to the National Alzheimer’s Project Act (NAPA) Advisory Council during the July 2014 meeting in Washington, DC.
Convened the 2nd Dementia Summit of 70 diverse thought leaders in June 2014 to identify and form consensus recommendations on what is needed to improve dementia care in the U.S. and the steps needed to make it happen.
Expanded the Leadership Team to include LeadingAge Georgia.
Published an article in the American Society on Aging’s Fall 2013 edition of Generations about a conceptual and operational framework for person-centered dementia care.
Coalesced and connected over 300 individuals and organizations across the country as Dementia Action Alliance partners.
Published a white paper, “Dementia Care: The Quality Chasm,” detailing the consensus information.
Convened the 1st Dementia Summit of 60 diverse thought leaders in June 2012 to discuss and form consensus on a definition for person-centered dementia care and a conceptual and operational framework for it.