Dementia. What image is painted in your mind when you see this word?
Memory loss, anger, no longer capable of being productive are just a few that come to mind. None are positive. They reinforce the old mindset that one better put their affairs in order after being diagnosed with dementia.
Karen Love, executive director of the Dementia Action Alliance, said, “Unfortunately when something is put out there, it’s usually only a tragedy we hear about.”
That skews the reality of the quality of life after diagnosis.
Layering over 40 years as a gerontologist, Love said, “What we know is that people, especially early on, before their expectations become colored, understand this is a chronic condition. It’s a gut punch and everybody has to grieve a little and come to terms with that.”
According to their website, “DAA is a nonprofit national advocacy and education organization of people living with dementia, care partners, friends and dementia specialists committed to creating a better country in which to live with dementia.”
Their approach is the flip side to the unbending ethos starting with an advisory board comprised of members who have some form of dementia. The willingness of the board to share firsthand what it is like teaches the the other members.
“There is such a stigma about dementia and that does a lot of harm to those who have this condition,” said Love. “As a result, it hugely changes the direction and quality of their life.”
Just like diabetes, one can learn to live around it.
Words matter. So does the sum of the person. Given the tools and resources necessary to continue living a proactive life is at the heart of our organization, Love said.
DAA is coming to Atlanta and hosting “Re-Imagining Dementia” conference from June 20-22 at the Westin Buckhead Hotel.
“Atlanta is the emotional center for Civil Rights and for people living with dementia, this is a human rights issue,” said Love.
“We can’t afford as a country to disempower those. We need to give them more so they can be resilient and deal with things on their own level. We don’t want to increase their disability,” she said.
For more information, visit https://daanow.org
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