Nobody who knew Helen Wiki Jackson would have described her as a passive person. Quite the opposite, in fact.
For much of her life, Jackson was as strong-willed as they come. She married right after high school, reared 10 children and left an abusive husband. Later, after a stint in California, she returned home and served as an elder in the Gila River Indian Community.
Her independent streak was put to the ultimate test, though, when Jackson started showing symptoms of Alzheimer’s disease around the age of 80.
A short time later, Jackson began a stage of her life in which reliance on others was an absolute necessity. Her daughter, Cheryl Jackson, put her own life on hold for eight years to move in with her mother and provide round-the-clock care.
That’s how Cheryl, a 66-year-old certified welder and artist, became one of nearly 11 million people in the U.S. who the Alzheimer’s Association recognizes as unpaid caregivers.
“It was difficult, but mother and I worked through many issues,” Cheryl says. “We held hands all the time. People with Alzheimer’s need to feel safe, secure and loved.”
Cheryl, who had received some health care training, recognized that her mother was presenting early-stage symptoms of Alzheimer’s and quickly sought support through the tribe’s health care system, Arizona Long Term Care System (ALTCS), a local hospice and Phoenix-based Banner Alzheimer’s Institute (BAI).
But the kind of support structure that Helen Jackson relied upon during the final years of her life is not available for everyone who lives on tribal land in Arizona.
Native American communities, in particular, have struggled to deal with Alzheimer’s because the disease was largely misunderstood to be a normal part of the aging cycle. Native American people have traditionally tried to deal with these kinds of family issues without seeking outside help and because treatment options are limited in some tribal areas.
Several agencies and health care consortiums are working to increase awareness of the disease among those who still don’t understand it.
Filmer Lalio, a community outreach coordinator for the Banner Alzheimer’s Institute, is heading up efforts to increase awareness of the disease among Native American communities, where the words “Alzheimer’s” and “dementia” don’t even exist in tribal languages.
Among Native Americans, there is a cultural perception that Alzheimer’s disease is just a normal part of the aging process. For centuries, Native Americans have respected and cared for their elders, and memory loss or wandering was simply regarded as part of getting old.
Lalio says in many cases, families are reluctant to talk about their elders’ issues outside the home. Also, some tribes have a cultural prohibition about openly discussing disease or death because of the widespread belief that talking too much invites illness to strike.
“One reason I’m here is that I understand our community and can relate to their cultural concerns,” Lalio, a Zuni tribal member, says, adding that one of his biggest tasks is educating tribal communities that Alzheimer’s is a disease just like diabetes or heart disease.
The Banner Alzheimer’s Institute trains tribal health care providers on diagnosing and treating the disease and counsels Native Americans on caring for family members with the disease. During the past four years, Lalio and his teammates have reached out to more than 3,200 caregivers and some 700 health care providers who work with Native American communities.
When the effort began, “nobody knew how to identify the symptoms of Alzheimer’s,” Lalio says.
Although the Banner Alzheimer’s Institute and other health organizations are working to train tribal health care workers to identify cases of Alzheimer’s, so far they have been unable to collect accurate, actionable data on the disease.
A recent data-collection effort with the Hopi Tribe elicited a typical response from Native American communities. Health care providers in the northern Arizona tribal community were unable to estimate the number of elders who were living with Alzheimer’s disease. The report, instead, was that there were “a lot.”
The challenge of getting accurate data on Alzheimer’s is complicated by the fact that the disease is not often listed as the cause of death on death certificates. Jan Dougherty, director of family and community services for the Banner Alzheimer’s Institute, says there is a movement urging doctors to add “caused by Alzheimer’s” on death certificates — especially in cases where the cause of death is aspiration pneumonia, which is commonly developed by late-stage Alzheimer’s patients.
“This will create a more accurate representation of why the person died,” Dougherty says. “These people would not have died if they hadn’t gotten pneumonia caused by progression of Alzheimer’s.”
Alzheimer’s is an always-fatal disease that killed more than 70,000 people in 2006 in the United States, according to the Alzheimer’s Association. Arizonans accounted for more than 2,000 of those deaths.
The U.S. Department of Health and Human Services’ Indian Health Service is the primary health care provider in reservation communities. Other local organizations and the Banner Alzheimer’s Institute also offer some services, but providing effective treatment is difficult because of a lack of timely diagnoses, medical professionals and money.
IHS’ chronic underfunding has prevented it from doing much for Alzheimer’s patients beyond prescribing the one medication available, Aricept, which Lalio says many of his clients are unable to tolerate. And diagnosing Alzheimer’s involves other cognitive and physical tests requiring expertise, clinical time and costs.
Dr. Julie McCole Phillips, a family practitioner specializing in geriatrics who worked at the IHS Chinle office on the Navajo Nation in Northeast Arizona, wrote in 2003: “Commonly used screening tests, such as the Mini Mental Status exam, have limited utility in populations whose first language is not English and in patients who may lack more formal education.”
Some tribes are bolstering elder care in their own tribe-run health programs.
Many tribes, including the Gila River Indian Community, have either developed or are in the process of developing comprehensive elder care programs, including cognitive disorder strategies.
The Banner Alzheimer’s Institute offers technical assistance to tribes in setting up their own Alzheimer’s programs, focusing on day-to-day living, communication and exercise. So far the institute has worked with 16 of Arizona’s 22 tribes.
Tohono O’odham Vice Chairman Isidro Lopez recently said his tribe has spent the past two years developing a long-term plan that incorporates Alzheimer’s care and which will “outlive my administration.”
The Tohono O’odham has its own long-term care facility, which includes both technological and traditional care, and even a hospice.
Ultimately, effective treatment is as much about comfort as it is about fighting the effects of the disease. The Banner Alzheimer’s Institute runs a visual arts program to help Alzheimer’s and other patients live with joy as long as possible. The institute recently incorporated Native American art into the program.
Lalio says that the aim is to help connect Native Alzheimer’s patients back to their cultural memories through their tribe’s art.
Case in point, the home Cheryl and Helen Jackson shared could pass for a small museum, filled with Hopi pottery and Katsina dolls, Pima and Hopi baskets, Cheryl’s artwork and several pictures. Cheryl painted her mother’s room green because she learned that Alzheimer’s patients need visual stimulation.
Perhaps it was this tribal connection, which called Helen back to the Gila River Indian Community numerous times throughout her life, that enabled flares of her personality to remain even as the disease tried to extinguish them.
“It was very hard to see her intellect dissipate, but at times she would still make very profound statements,” Cheryl says.
Surrounded by colorful reminders of her life, her Native American culture and her daughter, Helen willed one more profound decision — to say goodbye.
Cheryl’s youngest brother died on Nov. 7, 2009. She had to deliver the news to her mother. Helen, at 90, had already buried three children. “The last one was extremely difficult for Mom,” says Cheryl.
While Alzheimer’s had robbed Helen’s mind of much of its function during the previous 10 years, she was still painfully aware of each loss.
“She said to me, ‘I don’t want to bury any more children,’” Cheryl says.
Helen passed away 18 days later in her own bed.
“She finally got to go home,” Cheryl says.