At some point in our lives, many of us will likely be a caregiver to someone we know with an illness, injury or disease that prevents self-sufficiency. Sometimes it only lasts a few days, but many take on this role for years.
With American Indian and Alaska Native (AI/AN) people ages 65 and older more pre-disposed to dementia than other racial and ethnic groups, including Alzheimer’s, this increases the likelihood of being a caregiver in tribal communities. It is not surprising then that one in three AI/AN adults is a caregiver, more than other racial and ethnic groups.
For caregivers like Lorraine Ojibwe, caring for her mother with Alzheimer’s is hard. After her mother’s diagnosis a few years ago, and with her father’s health failing, Lorraine quit her job and she and her husband moved in with her parents in their rural tribal community to provide care. By then, her mother’s memory issues were so advanced that she couldn’t remember how to use a phone.
“Alzheimer's is vicious, stealing her memories of those she loves and taking away her ability to communicate in full sentences as I watch her search for words,” Lorraine said. “Sometimes I will see my mother in her eyes, small flickers of her former self returning for just a few moments, then going blank."
Lorraine Wildcat (Ojibwe from Lac du Flambeau), who is a caregiver for her mother Rosetta (left), stand on the steps of the home where they now live together. Rosetta has Alzheimer’s disease.
Tribal participants from the Native Elder Caregiver Curriculum workshop stand with trainers from the National Resource Center for Native American Aging (NRCNAA).
In tribal communities, health disparities and a lack of health and community services were made worse by the COVID-19 pandemic. COVID-imposed shutdowns caused social isolation and created restrictions to even basic services like food, water and medicine. In December 2021, Lorraine’s father died from heart problems and COVID-19.
Sometimes I will see my mother in her eyes, small flickers of her former self returning for just a few moments, then going blank.
To help tribes address these barriers, support Native elders and provide much-needed respite care for caregivers, the CDC Foundation partnered with the International Association for Indigenous Aging (IA2) to improve well-being and mitigate the impacts of COVID-19. The project aimed to enhance and expand the capacity of tribal nations and communities to serve their people. IA2 , in turn, partnered with Dr. J. Neil Henderson, an expert in dementia caregiver training for tribal communities, as well as the National Resource Center on Native American Aging and HFC.
Through the project, AI/AN caregivers could apply for a grant providing 50 hours of respite care where paid, trained staff filled in for existing family and other informal caregivers. As part of the application, caregivers described how respite services and time away would allow them to meet their own essential needs and find rest and relief from the burdens of caregiving.
“[We will] spend more time with our own families,” one applicant wrote. “We currently spend 24 hours with our mother taking turns spending the night—doing this and holding full-time jobs."
Collectively, 25 caregivers from 12 tribal communities were awarded a combined 1,259 hours of respite care for self-care, rest and recharging.
To support community caregiver and older adult needs, IA2 also trained tribal aging, health and public health staff to enhance direct services. Through the Native Elder Caregiver Curriculum (NECC), participants learned culturally-responsive ways to address the biological, physical and cognitive changes related to aging.
And through the Savvy Caregiver for Indian Country—one of only two evidence-based interventions for dementia caregivers adapted for AI/AN communities—caregivers learned how to engage people living with dementia and ways to reduce caregiver stress.
Dr. J. Neil Henderson (Choctaw) presents Savvy Caregiver for Indian Country program leader training at the National Indian Council on Aging Conference.
In all, more than 325 individuals from 34 tribes took part in the pilot training programs. Participants included staff from three inter-tribal councils/conferences serving 83 more tribes. Attendee travel scholarships enabled in-person participation, including some who had never left their reservations for professional training. One hundred percent of the attendees would recommend both trainings to other tribal staff, according to training evaluations.
In addition to the trainings, the IA2 project team also developed a social media campaign focused on Native caregivers and respite care awareness, created an online caregiving resource library, conducted surveys of elders and aging service staff on dementia and developed caregiver tip sheets to support project activities.
The U.S. Census Bureau estimates that by 2030, one in five Americans will be over the age of 65. Preparing for an aging population's added healthcare and social needs is critical. By partnering with the International Association for Indigenous Aging, the CDC Foundation is supporting new and innovative approaches to easily accessible and culturally relevant services to tribal communities.