American Indian families know full well the terrible emotional and financial burdens that often arise after a family member is diagnosed with Alzheimer’s disease. Now, a new federal law and an accompanying advisory council are set to begin streamlining the government’s responses to those challenges—in the hope of reducing the burdens.
Signed into law this January by President Barack Obama, the National Alzheimer’s Project Act (NAPA) creates a framework for implementing a national strategic plan to combat the growing Alzheimer’s crisis, while coordinating disease-treating efforts across the federal government. The law, health advocates say, was long overdue, because the federal government had never undertaken a coordinated effort to overcome Alzheimer’s, despite increasing evidence that the disease and other dementias are on the rise.
NAPA requires that an annually updated national plan be submitted to Congress on how to overcome Alzheimer’s. It also calls for annual recommendations for priority actions to improve health outcomes for individuals with Alzheimer’s and lower costs to families and government programs. It further requires an annual evaluation of all federally funded efforts in Alzheimer’s research, care and services—along with their outcomes.
Significantly, NAPA creates an Advisory Council on Alzheimer’s Research, Care and Services, in which Native input is expected to play an important role. The council is officially charged with coordinating federal agencies conducting Alzheimer’s-related care, services and research. At the same time, it allows participation in the evaluation and strategic planning process by patient advocates, health-care providers, state health departments, Alzheimer’s researchers and health associations.
Health advocates say the needs of Indian families, while not specifically addressed in the official language of the law, can be addressed through the advisory council’s input. Individual members of the council have already said they are committed to ensuring a focus on Indian families as the law is put in place.
Bruce Finke, an elder-care consultant with the Indian Health Service (IHS), is one of the council members who promises that uniquely Indian issues will be identified and addressed. A family physician and a geriatric specialist, Finke has already made clear through his work at the IHS that Alzheimer’s and dementia are major concerns in Indian country. He elaborated on the nature of the problem in a recent government newsletter.
“There are a couple of reasons to suggest that [dementia] is increasing,” Finke said. “One is that the age of the American Indian and Alaska Native population is increasing and we know that dementia of all sorts increases in prevalence with age. So, it is a blessing to have more elders in Indian country, but we know as our population ages that we expect to see more dementia. The other thing is that there are other conditions that contribute to the rate and severity of dementia, especially high blood pressure and cardiovascular disease and stroke. Those rates are higher in American Indian and Alaska Natives and increasing because of the relationship with diabetes.”
Finke also noted that the IHS has created a Chronic Care Initiative in recent years that could help dementia sufferers.
“The issue with care for dementia is it has to be done in relationship with the care team,” he said, “and there has to be an eye toward understanding the experience of the elder and their family. That doesn’t happen in a system that is just designed around episodic visits, and it doesn’t happen in a system in which care takes place only within the four walls of the clinic.”
Also serving on the NAPA council is Harry Johns, president and chief executive officer of the Alzheimer’s Association, who has long pointed to the importance of assisting Native families on elder and Alzheimer’s-related issues. The organization has been a major supporter of the law, and Johns is widely expected among public health officials to play a strong role in making sure its potential is realized.
Another way for Indians to get involved in the new law is through the Friends of NAPA effort, created and led by the Alzheimer’s Association, which is bringing together various groups that want to be sure their concerns are addressed.
More information on joining is available online at FriendsOfNapa.org.