States Most Devastated by Dementia as Alzheimer’s Mortality Surges

Dementia is a rising health crisis in America and around the world. More than 55 million people have dementia worldwide and it is the seventh leading cause of death according to the World Health Organization (WHO).

Once referred to as “The Silent Epidemic”, dementia takes a toll on both public health and private lives.  For family members, friends and loved ones of a dementia patient, it can be extremely difficult to bear witness to the struggle.  And while dementia has recently made the headlines as Bruce Willis announced his diagnosis of frontotemporal dementia, many are all too familiar with the disease and its impacts. 

Dementia is an umbrella term used to characterize conditions related to the deterioration of major brain functions, most notably memory, language and cognition. While dementia is most often associated with Alzheimer's disease, there are actually five unique types of dementia that may impact memory and cognition, with other diseases that are linked to dementia. 

According to the Centers for Disease Control and Prevention, an estimated 6.5 million Americans are living with Alzheimer’s, and that number is expected to swell to 13.8 million by 2060. Alzheimer’s Disease is the seventh leading cause of death in America and represents between 60% and 80% of dementia diagnoses in the U.S.

And while the overall number of those with Alzheimer's is on the rise, of equal concern is the trend in mortality rate. In fact, from 2000 to 2021, the Alzheimer’s mortality rate increased by 72% according to the CDC, while mortality rates for other leading causes of death – such as heart disease, cancer and stroke, though higher overall, have fallen since the turn of the century. This increased mortality rate is worrying given two factors: (1) the expected increase in dementia rates in the next few decades, (2) a lack of effective treatments for dementia conditions such as Alzheimer’s Disease.

Why are Alzheimer's mortality rates rising? 

Despite a multitude of studies conducted by federal agencies,  there is still so much about Alzheimer's that remains an enigma. While the medical community does not yet have consensus on what exactly is driving the increase in mortality rates, several theories have been posited:

Comorbidities and an Aging Population: 

The National Library of Medicine links concurrent comorbidities – such as cerebrovascular disease, diabetes and hypertension to increased mortality rates. And as America ages, the prevalence of these comorbidities is also expected to increase. 

In fact, from 2000-2019, life expectancy in America increased by a whopping 2.3 years. And because advanced age is the single greatest risk factor for dementia, this increase in life expectancy may be contributing to the increase in dementia mortality rates. In other words, an older population which has survived other health risks may be more likely to suffer from dementia. On the other hand, studies are underway with centenarians and supercentenarians – individuals who are over 100 years old – who show no signs of dementia - to establish genetic and environmental factors which could offset this link between age and dementia.

Changes in reporting on death certificates: 

While the increase in Alzheimer's mortality rates seems alarming, some have suggested that our method of reporting causes of death has changed over time. The National Institutes of Health (NIH) published a review of data titled: Is the Rise in Reported Dementia Mortality Real? Here they suggest that changes to reporting on death certificates may be driving the increase in Alzheimer's mortality statistics. If dementia is now being listed more often as the official cause of death (instead of the comorbidity that led to the death, such as Pneumonia or stroke), this would change our perception of Alzheimer's mortality rates. 

Lifestyle factors: 

America, which ranks No. 40 in the world for life expectancy and is one of the most obese countries in the world, continues to face challenges in maintaining a healthy lifestyle compared to other countries. And the CDC has indicated that poor lifestyle choices - including overeating, smoking and excessive alcohol consumption - may contribute to dementia. Drawing on learnings from a cohort study with immigrant populations, there are indications that diet may play a role in increased dementia risk. For example, some immigrant populations show higher dementia rates compared to populations of individuals living in their respective home countries. One key variable identified in these studies is the American diet, rich in fat and cholesterol but is low in greens, nuts and healthy oils.

Other considerations include a poor work-life balance in America compared to other countries. This focus on work and productivity is correlated with America being cited as one of the ‘most stressed’ countries worldwide. While no study has been completed examining stress and dementia at the population level, there is some evidence linking high stress to increased risk for dementia.

And while all the factors listed above likely play a role, the U.S. is spending billions of dollars in search of a cure, with promising treatments being studied that could slow the progression of Alzheimer’s Disease and other dementias. A new $300 million research database will track Americans’ brain health over time, which should be instrumental in providing insight to researchers, given dementia impacts people’s cognitive function and memory. Work also continues to increase the accuracy and sensitivity of dementia biomarkers that precede the onset of behavioral symptoms (such as memory loss). 

Impact on family caregivers 

In 2023, medical and long-term care costs for people with dementia are expected to reach $345 billion, while the value of unpaid caregiving is nearly $340 billion. There is no doubt that care for dementia patients exacts not only a stunning financial burden, but a deeply personal toll as well.

Caring for a family member with dementia can significantly harm the caregivers physical, emotional and social health. Family caregivers of people with dementia are more likely to experience depression, anxiety, and a poor quality of life compared to caregivers of people with other conditions. According to the National Library of Medicine, 58% of family caregivers report extreme stress, 47% less sleep, and 43% feel isolated. 

Impact across America

Dementia’s burden is not evenly distributed across the U.S. Some states are hit harder than others due to differences in demographics and risk factors such as age, race, gender and education level, as well as access to health care and social services.

To determine which states are hit the hardest, Seniorly analyzed six metrics related to dementia from the CDC and Alzheimer's Association in all 50 states and D.C., developing a “burden score” to represent the combined impact of data. These include mortality rates, cognitive decline, daily support needs, doctor’s visits, cost burden and expected population growth.  A full explanation of the scoring and methodology is at the bottom of the study. 

Key findings

• Interestingly, the toll dementia takes on a state isn’t directly linked to the size of its older population. Our findings show evidence of  geographic influence, with states in the Southeast seeing a greater dementia burden overall.
• Mississippi, Alabama, Washington, Georgia and Arkansas have the highest Alzheimer’s mortality rates in the country — a key driver in the overall dementia burden score.
• Regions with lower overall dementia burden scores tend to have lower Alzheimer’s death rates as well as fewer older adults experiencing cognitive decline, but Medicaid costs for dementia patients weren’t closely related to a state’s overall score.

Hardest hit states

According to our analysis, Texas has the greatest dementia burden score in the U.S. Contributing to the overall score were several key metrics; the Lone Star State saw 41.9 deaths from Alzheimer’s per 100,000 population in 2021, and the number of people with dementia is expected to rise 22.5% between 2020 and 2025. That’s despite the state having one of the youngest populations in the U.S.: Just 13.2% of Texans are 65 or older. The higher mortality rate is likely due to a combination of factors, such as an unhealthier population overall, the number of medically underserved regions, and the lack of public spending to support dementia patients and their families.

Fellow southern states Alabama, Louisiana, Kentucky and Mississippi round out the top five states with the biggest toll related to dementia. Mississippi has the highest Alzheimer’s death rate in the U.S., at 52.8 per 100,000. And in Kentucky, just 1 in 3 older adults with cognitive decline have talked to a doctor about it.

On the other end of the spectrum, Washington, D.C., has the smallest dementia burden thanks to its slower growth in residents with dementia and lower Medicaid costs per patient. Other areas with lower overall dementia burdens include Maine, Wisconsin, Pennsylvania, New Jersey and Connecticut. However, keep in mind that it can be difficult to directly compare the nation’s capital city to states.

Outliers

There were a few notable outliers. Washington state scored well for most metrics, with a lower rate of cognitive decline, a higher share of struggling seniors seeing a doctor and an average Medicaid cost burden of $4,558 – but it had the third-highest Alzheimer’s mortality rate in the country, at 45.5 deaths per 100,000. That disconnect may be due to Washington’s relatively young population, given just 16.2% of residents are 65+. The Evergreen State has also prioritized patients, announcing in 2022 that it would invest $47 million in community-based behavioral health treatment, including specialized dementia care.

New York, meanwhile, has a lower dementia burden overall due to its low Alzheimer’s mortality rate. But the data indicates the Empire State’s seniors still need a great deal of care: 36.4% of older adults with cognitive decline need help with daily activities, a higher rate than nearly any other state.

In Wyoming, where the population with dementia is expected to grow by 30% from 2020 to 2025, just 18.7% of older adults with cognitive decline say they need help with daily activities, far below the 50-state average of 27%.

Rhode Island scored in the middle of the pack overall, but had the highest cost burden in the country: $19,583 in Medicaid costs per dementia patient every year, on average. We analyzed spending for Medicaid, not Medicare, because they cover different services for people with dementia. While Medicare spending is typically higher overall, Medicaid covers facility care and in-home services for seniors who would be unable to stay in their homes otherwise. About 1 in 4 people with dementia who live in the community are covered by Medicaid.

State level data for each category

The big picture

While some states are more affected than others, dementia is only becoming a more significant issue across the U.S. The number of people with dementia is projected to rise by 18% between 2020 and 2025, and medical bills can rise into the thousands.

Today, roughly 1 in 10 older adults is experiencing cognitive decline, and among them, 27% need help with day-to-day activities. Family members take on a major role as caregivers, but professional settings offer needed support, too, given 42% of older adults in residential care communities and 25% of those in adult day care centers have dementia.

Healthy Aging Tips

Dementia is the result of a combination of factors, including age, genetics and family history, but lifestyle risk factors also play a role. Dementia is linked to common chronic conditions such as high blood pressure, diabetes and depression, as well as hearing loss, smoking and binge drinking. 

While dementia is not currently a preventable condition, there are some steps you can take to ensure healthy aging and brain health to reduce your risk later in life.

• Exercise regularly. Data shows that 30 minutes of daily exercise is linked to both overall health and brain health. As you get older, you might consider varying your exercise habits and exercising with friends to increase the benefits and enjoyment of exercise. 
• Eat responsibly. Increasing the consumption of foods rich in Omega-3-fatty acids (such as salmon) and reducing consumption of high-fat and high cholesterol foods (such as red meats) is linked with improved heart and brain health.  Regulation of food consumption will also reduce your risk for cardiovascular problems, obesity and diabetes, which are associated with an increased risk for dementia.
• Exercise your brain. Emerging research suggests that challenging your brain each day with new experiences can increase your resistance to dementia onset. Examples include learning new languages, musical instruments, solving crosswords and sudoku. 
• Maintain your relationships. There appears to be a correlation between socialization and lowered dementia onset. Therefore, spend time with your family and friends as much as possible. This is one of the reasons that the Seniorly team is so supportive of structured senior living environments; if you live at a senior living facility, there are so many opportunities to engage and socialize in ways that are individuated and personal - older adults have a great opportunity to make new and lasting relationships with other residents.
• Sleep well. There is an inverse relationship between quality sleep and dementia onset. One reason for this is that your brain has ‘janitor’ cells that operate only during sleep and are responsible for clearing some of the toxic byproducts associated with dementia onset. Therefore, it is advisable to get a good quality (minimize noise, disturbances and address any potential sleep apnea) and reasonable quantity (each person is different, but 6-8 hours is a reasonable estimate) of sleep. If you have trouble sleeping, you might consider seeing a sleep specialist who can diagnose any underlying pathology or behavioral reasons for your limited sleep.
• Moderate your drinking. Unhealthy drinking habits may increase your risk for dementia. On the other hand, moderate drinking (1 drink per night for women, 2 drinks per day for men) may be associated with lowered dementia risk. So, drink responsibly!
• Reduce risk for brain injuries. Elderly individuals are at an increased risk for fall injuries. These fall injuries can increase the risk for both skeletal but also brain injuries. Brain injuries are associated with increased risk for dementia. Therefore, it is best to reduce the risk for fall injuries. If you find yourself losing balance more regularly, speak with a physiatrist, neurologist or physiotherapist to determine and address reasons.
• Do not smoke. Smoking increases your risk for several health problems and can directly or indirectly increase your risk for dementia.

Conclusion

Overall, dementia’s burden in the U.S. is substantial and growing. Future treatments may make progress in the fight against dementia-related disease, but for now, its economic, social and emotional toll continue to shape the daily lives of millions of families across the country. Knowing where that burden is greatest can help families decide how to address their loved one’s medical, social and emotional needs.

Methodology

We used the most recent data from the Centers for Disease Control and Prevention and the Alzheimer’s Association to determine which states are facing the greatest burden from dementia. We used a Z-score distribution to scale each of six metrics relative to their means across all 50 states and Washington, D.C., and capped outliers at 3. We multiplied some Z-scores by -1, given a higher score was negatively associated with being above the national average. A state’s overall ranking was calculated using its average Z-score across the six metrics. Here’s a closer look at the metrics we used:

• Mortality rate: Alzheimer's disease mortality rate, 2021 (CDC)
• Cognitive decline: Share of adults 65+ experiencing worsening cognitive decline or memory loss, 2020/2019 (CDC)
• Daily support: Share of adults 65+ who need help with day-to-day activities due to cognitive decline, 2020/2019 (CDC)
• Doctor’s visit: Share of adults 65+ with cognitive decline who have spoken with a doctor or other health care provider about it, 2020/2019 (CDC)
• Population growth: Percentage increase in the number of people with Alzheimer's disease, 2020-2025 (Alzheimer's Association)
• Cost burden: Average annual Medicaid costs per adult 65+ with Alzheimer’s or another form of dementia, 2020 (estimated per capita rate using state prevalence figures, Alzheimer's Association)