Background of the Dementia Action Alliance

DEMENTIA SUPPORT – A SOCIETAL CHALLENGE

The United States is facing unprecedented growth in the number of people living with dementia. There are currently over 5 million Americans – one in nine individuals age 65 and older – and more than 200,000 living with dementia younger than age 65.  It is very likely you know someone in your extended family or community with this condition.  The numbers will escalate at a vast rate as the baby boom generation ages.  Ten thousand baby boomers turn 65 every day and this rate will continue for the next 18 years.  Our nation is not yet prepared to care for the increasing number of people who will have dementia.

On an individual level, besides having to manage living with a chronic, progressive health condition for which there is a limited infrastructure, people living with dementia often experience the indignity of being stigmatized and discriminated against.  Because most Americans do not understand dementia, they end up treating those who have the condition as “defective”.  Many of the words commonly used to describe people who are living with dementia are diminishing (e.g., demented, sufferer) and create barriers to being able to live a positive, purposeful life with dementia.  Stigmatization and misperceptions increase as an individual’s abilities decrease to the point where his/her expressions of frustration, anxiety, pain, and boredom are considered behavioral problems rather than as unmet needs.

A CALL TO ACTION

Awareness, education, and understanding are antidotes to stigma.  The Dementia Action Alliance (DAA) is a people’s movement of individuals, organizations, companies and communities interested in helping improve dementia support, care and inclusion in this country.  Begun as a collaborative initiative in 2011 of five non-profit organizations (CCAL, The Eden Alternative, the Pioneer Network, Planetree, and AMDA: The Society for Post-Acute and Long-Term Care Medicine), the DAA believes that through an organized and coordinated national effort of the collective talents, energies, and voices especially of people living with dementia, together we can make a difference.

In 2016, at the behest of the DAA initiative’s organizing organizations, CCAL revised its Bylaws and Board of Director composition and formally made a name change to the DAA.  The DAA is a 501 (c)(3) non-profit corporation registered in the Commonwealth of Virginia.

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