The Dementia Action Alliance (DAA) was founded in 1996 and received its 501(c)(3) IRS charitable status in 1997. The nonprofit organization was initially named CCAL–Advancing Person-Centered Living. In 2012 DAA changed its name to the Dementia Action Alliance to reflect its sole focus on dementia. DAA’s co-founders are Karen Love and Jackie Pinkowitz.
Since 1999 DAA has operated as a virtual organization to deploy all resources into supports and services rather than rent and infrastructure costs. DAA has an Advisory Board of nine individuals living with dementia, and a 14-member Board of Directors, including two members living with dementia. Additionally, DAA has approximately 90 volunteers involved in various activities, including the Arts, Technology, & Optimizing Well-Being Workgroups, the virtual engagement program, and online discussions.
There are many organizations that have a focus on dementia, but their primary goal is researching the cure. DAA is the only organization solely dedicated to helping people and their families learn how to best live with the symptoms of dementia, strategies for changing abilities, social engagement, and supports for empowerment and enablement.
DAA’s approach to addressing the societal challenges of living with dementia is unique because of the background, commitment, and experience of its two co-founders – Karen Love and Jackie Pinkowitz. They are both deeply committed to creating a better society in which to live with dementia and have unflaggingly continued this quest for over twenty years. Karen and Jackie both have a deep commitment to “Nothing About Us Without Us”. This means working alongside people living with dementia and their care partners so they can best inform what is needed. Karen and Jackie both are oriented to strengths-based practices coming from being a speech pathologist and a special education teacher respectively. Strengths-based practices build on individuals’ abilities rather than focusing on inabilities in a proactive, person- and relationship-centered context. Lastly but importantly, DAA’s uniqueness results from the exemplary leaders who serve on the DAA’s Advisory Board and Board of Directors with a focus on changing the status quo.
Karen Love’s Background
Karen Love is a gerontologist and a nationally known dementia specialist. She began professionally as a speech therapist and transitioned into long-term care working at executive levels in nursing homes, assisted living, and
continuing care retirement communities. She has worked to advance practices that best support well-being for people living with dementia for over 30 years – the past 20 years at a national leadership level. She: co-founded three national aging advocacy and education organizations – the Dementia Action Alliance, the Direct Care Alliance, and the Center for Excellence in Assisted Living; received two National Institute on Aging Small Business Innovative Research Awards for dementia research [2010, 2012]; twice testified before the U.S. Senate Special Subcommittee on Aging; has been extensively published; and been interviewed for national television. Karen has served as DAA’s full-time executive director since 2016.
Jackie Pinkowitz’s Background
Ms. Pinkowitz earned her Master’s degree in Education from Rutgers University and holds advanced certification in special needs populations. She taught young special needs students in an impoverished school district for seven years. She then became the primary family caregiver to her mother and father-in-law who had dementia. She has served on Rutgers School of Social Work Advisory Council on Aging since 2017 and in 2019 was invited onto the Advisory Committee for the creation of the Alzheimer’s Journey Coordinator Certificate Program at Camden County College in collaboration with Rowan University/Rutgers- Camden Board of Governors; was one of the professionals asked to interview potential candidates; recommended materials for the program; and was a guest lecturer at program classes.