COMMENTARY: Dementia in Indian Country

by Sep 21, 2018Health




The most common question I get asked is, “What is the difference between Alzheimer’s and dementia?”  Dementia is an umbrella term that includes a lot of different types of dementia: Alzheimer’s is one of the types. There are many others including vascular dementia, Lewy Body dementia (what Robin Williams had), and frontotemporal dementia. Alzheimer’s is the most common followed by vascular dementia. The word “vascular” means relating to or about a blood vessel. So, this dementia occurs because of issues relating to your blood vessels. This can include strokes, cardiovascular disease, diabetes, and bleeds in the brain. It is also possible to have mixed dementia, which means you have more than one type.

The most common risk factor for Alzheimer’s disease is age. The number of American Indian/Alaskan Natives (AIANs) 85 years of age and older is projected to increase from 42,000 in 2012 to 300,000 in 2050—a more than sevenfold increase. This means there will be many more tribal elders with Alzheimer’s Disease. One of my areas of focus is dementia in tribal populations. There are many things about dementia care and diagnosis that are different in Indian Country. How does dementia in tribal people compare to other populations? A study done by Mayeda et al in 2016 was the first to examine rates of dementia in AIAN populations. In this study, dementia incidence (the rate or frequency of the disease) was highest in AIANs and African-Americans.

What other things about dementia are different for our communities? There are now 573 Federally-recognized tribes across the country. Our tribes are heterogeneous, meaning we are very diverse in our languages, culture, and traditions. Some tribes do not have a phrase or term that fits with “dementia” because it is a foreign concept. We have to perform brain exercises and ask a lot of questions during a memory evaluation. We have to do this because we don’t have a blood test or xray to diagnose dementia like we do for diabetes. But, these tools were not developed for our tribal populations. There is currently a study at the University of Washington evaluating a tool I modified to use in our community. Trying to develop more of these tools will help us do a better job in diagnosing dementia.

There is evidence from a study by Linton & Kim, 2014 that AIANs, along with African-Americans, are more likely to experience traumatic brain injury caused by violence than other populations. This is a risk factor for developing a memory disorder. CDC defines a traumatic brain injury (TBI) as a disruption in the normal function of the brain that can be caused by a bump, blow, or jolt to the head, or penetrating head injury. Everyone is at risk for a TBI, especially children and older adults. We also have more liver disease and this can increase your risk for developing memory disorders because of changes in blood flow, ability for your liver to filter toxins, and abnormal areas/lesions that can develop in the brain because of the liver disease. CDC estimates that AIAN men and women are 2.5 times more likely to be diagnosed with liver disease than Non-Hispanic whites.

For many years AIAN elders life expectancy was much lower than the majority population. Back in the 1940s the life expectancy was 51 years of age. People were dying before they would ever develop a dementia. American Indians and Alaska Natives born today have a life expectancy that is still 4.2 years less than the U.S. all races population (73.5 years vs. 77.7 years, respectively). It is wonderful news that our elders are reaching older ages but this may be a reason that our communities had not heard or experienced Alzheimer’s disease and other dementias until recently.

This makes it difficult to “catch up” quickly to what is happening in the rest of the country. I recently gave a presentation to Oneida elders in Wisconsin and before the talk a lady said, “I don’t ever hear about dementia here.  I don’t think we have it.”

During the Q/A session, the friend sitting beside her asked me questions about her husband who has Alzheimer’s Disease. Many times we don’t share with others that our family members have memory issues. We assume their issues are related to “gettin’ old” or normal aging, or we don’t want others to know what is happening to our treasured elder family members.

“Why get diagnosed if there is no cure?” This is the second most common question I get asked. Research is still being done on biomarkers and other tests that can be helpful to diagnose memory disorders even before someone has symptoms of memory loss. Those are not widely available or covered by insurance companies yet. It is still important to get an accurate diagnosis as early as you can. Many people have a reversible cause of memory loss and if we can catch it quickly it is much easier to address that. If you have memory issues that do not affect your daily life, you may have mild cognitive impairment (MCI). Not everyone who has MCI gets dementia. The estimate is that 1/3 progress to dementia, 1/3 will stay the same, and 1/3 actually get better. We use this diagnosis, or a diagnosis of early dementia, as an opportunity to look at your overall lifestyle and brain/mind health to see what we can help you do to be in the groups that improve or stay the same. This includes talking about exercise. Exercise is the #1 thing that can help your brain. Period. We also talk about smoking, alcohol use, control of blood pressure, control of sugars in diabetes, liver health, medications that can affect your brain, etc. Other risk factors for dementia include having a close family member (parent or sibling) who has had dementia and having the presence of either of two types of genes. The genes are not routinely tested for yet and are used mostly in research settings. In the future we may be using these for early identification to help with treatment.

So, during this World Alzheimer’s Month I encourage you to think about yourself, friends or family members who may show one or more of the 10 signs of Alzheimer’s Disease and consider seeing your provider to gather more information about what could be causing the problem.