RENEE MONTAGNE, HOST:
Many Native Americans with Alzheimer's are outcasts in their own communities. There is not much knowledge about the disease on reservations and little in the way of support and resources. From member station KJZZ, Laurel Morales reports on tribal efforts to change that.
LAUREL MORALES, BYLINE: Delma Salazar sits close to her mom, Agnes Williams, in their living room.
DELMA SALAZAR: Agnes, she wants to ask you a question. Can you answer?
MORALES: Can you tell me how old you are?
AGNES WILLIAMS: How old am I?
WILLIAMS: I don't even know. I've forgotten.
WILLIAMS: Eighty-nine, I guess.
MORALES: Agnes looks like she's trying to complete a puzzle and then gives up and falls asleep. She's in a progressed state of the brain disorder. She must be led to the kitchen to eat and to her bed to sleep. And often she reverts to her native language, but her daughter can't understand her. Delma Salazar, her husband and three kids were living in Los Angeles eight years ago when her sister called. She told Delma their mom kept forgetting things and getting lost.
SALAZAR: I didn't know what Alzheimer's was. You know, I - nobody's ever talked about it. Maybe it's an embarrassment.
MORALES: Delma brought her mother to live with her family in Los Angeles. But Agnes had never been off the reservation. Soon, she kept running away and forgetting where she was.
SALAZAR: It was one night - I was sleeping in the living room and I remember waking up and watching her walk into the kitchen. And she just looked up. She looked around, and she was wondering where she was at. And I think that was the most scariest part for me because then I realized, you know, she really doesn't know. She really doesn't know.
MORALES: In her rare moments of clarity, Agnes would say she was desperate to go home. So they moved back to the Salt River Pima-Maricopa reservation, southeast of Phoenix in rural Arizona. Agnes has 14 kids, many of whom live on the reservation. But Delma is the only one willing to care for her mom.
NICOLE LOMAY: Delma's story is very common.
MORALES: Nicole Lomay travels to the Arizona tribes as community outreach representative for Banner Alzheimer's Institute.
LOMAY: People come to me and tell me, I didn't know. I didn't know that my wife is having symptoms of Alzheimer's disease, and I was giving my wife a hard time. I thought she was just, you know, getting on my nerves. I thought she was doing it on purpose.
MORALES: Lomay, who is Navajo, has a grandfather with dementia.
LOMAY: He was herding sheep in his truck. So, they were allowing him to drive to the location where these animals are. With my own family, they didn't have the resources at all.
MORALES: Only half of the general population with Alzheimer's disease is ever actually diagnosed. A diagnosis is even rarer in Indian country. There's a cultural notion within the community. People begin life as a child and end life as a child. Many Native Americans don't recognize it as a disorder. So the Banner Alzheimer's Institute holds workshops for health care providers and social workers, teaching them how to do memory screenings, talk to families and lead support groups. Delma Salazar says she doesn't have time to go to support group meetings, but having an understanding of the disease does help. She is learning to cherish the rare moments when her mom wakes up and laughs or shows a glimmer of her old self.
SALAZAR: We have always been close. So to see her being that strong native woman always cooking, always cleaning, always trying to plant her own garden, that was a whole different picture compared to now, and it's hard.
MORALES: While we're talking, she sees her mom, Agnes, has dozed off again, so she covers her in a fuzzy purple blanket. For NPR News on Laurel Morales in Flagstaff.
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