Nonprofit provides support to people living with dementia and their caregivers
NEW YORK (WABC) -- A nonprofit organization is working hard to provide support and free resources to those living with dementia and their caregivers too.
Ada Rosa remembers her name and those closest to her, but much of her memory has faded due to dementia.
Doctors diagnosed Rosa in 2019, but her daughter, also named Ada, had her suspicions long before then.
"I remember one time for Christmas she was making the roast pork and for some reason, the roast was raw and she thought it was done," said Ada Montalvo.
After the diagnosis, Ada said she lacked support from doctors.
"I think they should have been more prepared to talk to somebody that is ignorant to the disease," she said.
Help finally came in the form of a recommendation to call the Act Now Foundation. The Hudson County nonprofit provides free supportive services to those living with dementia and their caregivers - any time and any day.
It offers services like counseling and planning for long-term care.
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"We're really trying to reach those individuals who are not getting the diagnosis, who are not talking about it because of the stigma," said Kristine Allen with the Act Now Foundation.
For the cofounders, it's personal. Both had family members with dementia die, forcing them to pivot and become caregivers.
"You don't want to believe it, that your mom was your rockstar, not remembering to take a medication, not remembering whether she ate or not, I mean, this is devastating," said Cary Lopez with the Act Now Foundation.
They turned loss into advocacy, fighting for state legislation that allows for dementia and associated disorders to be listed as a secondary cause of death on a death certificate.
The co-founders found those deaths had gone underreported.
"We feel that's a burden to research supportive care and cures," Allen said.
Until a cure is found, the women hope to continue helping people like Ada.
"I found somebody that understood everything that was happening to me," Montalvo said.
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