New steps are underway to improve the detection and management of Alzheimer’s disease and other dementias among American Indian and Alaska Native elders. A $11.3 million dollar contract has been awarded to specifically train healthcare providers and support patients’ families in communities that have little access to such specialized care.
The program will be led by Dr. Dedra Buchwald, a professor of neurological surgery at the University of Washington School of Medicine in Seattle, and it is funded by the Indian Health Service (IHS). She and her team will create and implement instructional programs over the next five years. Jordan P. Lewis, PHD, (Aleut/Sugpiaq, Native Village of Naknek), who is a professor and director of research at the College of Indigenous Studies, University of Alaska Fairbanks, will be part of the team along with six American Indian and Alaska Native faculty, staff and consultants.
“The investment by the Indian Health Service (IHS) demonstrates its commitment to improving awareness of dementia and working in collaboration with IHS clinics and providers to develop culturally, responsive and culturally, safe resources, diagnostic tools, and education that is reflective of the tribal communities across Alaska and Indian country,” said Lewis.
The primary goal of this new program is to train primary care providers to recognize and improve overall care.
“They’ll be trained on how to manage dementia locally, talk to families, and identify when certain medications are appropriate,” said Dr. Buchwald. “The program will strive to increase the knowledge and competency of primary care providers and staff who work with American Indian and Alaska Native patients and communities.”
She said there are only a few neuro-psychologists or other specialists within the entire healthcare system serving Native Alaskan elders. “It may take a year to get an appointment, and most patients are many miles from an MRI facility,” said Dr. Buchwald.
The researchers will first develop training modules and then roll them out to primary care providers, nurses and other employees on rural reservations and in urban areas. Trainees will learn to identify early symptoms of dementia. They will also be offered instruction in screening for conditions that can mimic dementia, such as hearing loss or vision loss.
Dr. Jolie Crowder, a national elder care consultant with the IHS, said the investment in training and support to improve care and services for elders living with dementia, their families and communities has lagged behind other priorities. However, this new commitment to building a partnership with the University of Washington to support the Indian health workforce is a big step toward addressing these gaps, according to Dr. Crowder.
Growth and challenges
In 2020, an estimated 38,000 American Indian and Alaska Native people age 65 and older were living with Alzheimer's disease and other dementias. That number is expected to double by 2030 and quadruple by 2050, according to a study published in August in the Journal of the American Geriatrics Society. Alaska is a state with very high rates of diagnosed Alzheimer’s disease and dementia-related diseases, according to the study.
Lewis said with the growing recognition of dementia in American Indian and Alaska Native communities, the investment in training of primary care providers, the caregivers and the communities, will assist in increasing awareness and understanding of dementia. The program may help reduce the fear and stigma that still exists in many of the Alaska Native communities, Lewis said.
“While the shortage of healthcare providers who are trained to give a dementia diagnosis is definitely a barrier, there are several other factors that contribute to this challenge in the state. Other significant barriers include the continued fear of dementia, or brain health in general, and these factors prevent individuals from seeking a diagnosis or obtaining additional resources on dementia,” Lewis told Senior Voice.
Addressing fears and misconceptions
Related to this fear is also the stigma associated with having a diagnosis of dementia, which impacts individuals as well as families and communities. “This fear of being stigmatized or having dementia prevents individuals from seeking out a diagnosis. In addition to the lack of healthcare providers, we’ve also learned from individuals that there is no need, or reason, to seek a diagnosis because there are no resources or services to support them once they have the official diagnosis. They do not understand why having a diagnosis would make a difference in their lives when there are no resources available for them,” Lewis said.
Although age is the greatest known risk factor for Alzheimer’s disease and related dementias, American Indian and Alaska Native communities are disproportionately at risk for other risk factors such as diabetes, hypertension, obesity, physical inactivity and social isolation. These risk factors can contribute to dementia.
“With the growing number of older adults in Alaska and age being the number one risk factor for dementia, there’s definitely an urgency to addressing dementia. In addition to age, the increasing number of individuals and other older adults, who have comorbidities placing them at higher risk for dementia, require us to explore interventions and health promotion programs to reduce risk for dementia,” said Lewis.
The program is for providers working in the healthcare systems that serve all 574 federally recognized tribes across America, as well as the 41 Urban Indian Organizations that serve the healthcare needs of Native people living in the United States.
“This $11 million program from the Indian Health Service is crucial to increasing the education and awareness of dementia among our healthcare providers, our families and our communities. This investment is the first step, hopefully, for a continued investment in this area of work for all of Indian country and make it a priority in our clinics and communities,” said Lewis.
John Schieszer is an award-winning national journalist and radio and podcast broadcaster of The Medical Minute. He can be reached at medicalminutes@gmail.com
