The most common form of dementia, Alzheimer’s Disease (AD), currently afflicts 5.5 million adults in the United States and is estimated by 2050 to impact 13.8 million (age 65 or older).
Why is this happening?
Given that age is the most significant risk factor for disease development, fewer are dying from other illnesses due to treatment advances, hence, more and more people are surviving into later adulthood. As a consequence, death rates for AD have risen 55% between 1999 and 2014 according to the Centers for Disease Control and Prevention’s (CDC) latest Morbidity and Mortality Weekly Report (MMWR).
The analysis is “the first to provide county-level rates for deaths caused by AD” obtained through review of state- and county-level death certificate data provided by the National Vital Statistics System where AD was reported as the etiology. Here are a few pertinent findings from their research (1,2):
- Most deaths from AD are in nursing homes and long-term care facilities, but the trend over the study period declined from 67.4% to 54.1%.
- The number of deaths at home increased from 13.9% to 24.9% suggesting burden on caregivers has increased even more than number of deaths.
- Highest death rates were in Southeast, with some significant areas in Midwest and West.
- Most adults with AD are over 65 years old—5th leading cause of death in this age group.
- 6th leading cause of death in U.S. (3.6% of all deaths in 2014).
- Death rates were lower in large cities as opposed to other urban-rural environments, with consistent increases in all age groups; but, higher in women and non-Hispanic whites compared to men and other racial/ethnic populations, respectively.
- Only Maine had a substantial decrease in AD deaths.
The report somewhat mitigates the rate of death increase by recognizing the diagnosis is occurring sooner from patients seeking earlier medical evaluation and it is being reported more by health professionals and coroners as a cause of death. Researchers also admit the data from death certificates --due to innate flaws-- can reflect an underestimation of death rates.
As I routinely convey, death certificates are no panacea for data collection. They vary in completion between doctors and institutions and don’t often optimally depict the entire clinical course. Underlying cause of death might not have been specifically written as AD— the times could have preferred the general term “dementia.” The CDC report specifically references situations where pneumonia might be written as a cause of death while the underlying AD that led to swallowing problems that resulted in aspiration which produced the pneumonia might have been excluded in the document. Therefore, that would not have been counted in this MMWR study.
AD is a progressive disease that impairs memory and prompts personality changes in its early phases. The individual is the variable in its manifestations. As it advances, performing routine daily tasks— like getting dressed, eating, bathing— become a challenge. Depending on the degree of forgetfulness and disease of the patient, one can imperil not only himself but also his co-inhabitants by not turning off a gas stove, wandering away from home or driving, for example. Round-the-clock supervision becomes an essential part of the process at some point. Eventually, mobility can be impeded and problems with swallowing and incontinence can lead to secondary difficulties like an elevated risk of aspiration or infection.
In addition to the physical and medical implications of AD following its natural course, the burden on families can extend well beyond emotional, psychological and financial distress. Burnout among caregivers is not uncommon. Watching a loved one decline is never easy, especially if recalling family member identities becomes hard for them.
As per the CDC, “it is estimated that total health and long-term care costs for persons with Alzheimer’s and other dementias in the United States will total $259 billion in 2017, more than two thirds of which is expected to be covered by public sources such as Medicare and Medicaid.” Most of the care for those who do not live in long-term facilities is done by family members or other unpaid caregivers— “in 2015, caregivers of persons with dementia, including Alzheimer’s provided 18.2 billion hours of unpaid assistance.”
These statements were included to underscore the societal impact of AD. Christopher Taylor, Ph.D., lead author and epidemiologist for the CDC’s Division of Population Health, National Center for Chronic Disease Prevention and Health Promotion concludes the following:
“As Alzheimer’s disease progresses, caregiving becomes very important. Caregivers and patients can benefit from programs that include education about Alzheimer’s disease, how to take care of themselves and their loved one, and case management to lessen the burden of care. Supportive interventions…improve the quality of care for people with Alzheimer’s disease.”
Take home messages…
The good news is we are living longer and longer as a society. Medical innovation and advancement has a lot to do with it. So, these are exciting times. Getting older holds no guarantee of developing dementia. Plenty of people will never experience it. In fact, the prevalence of dementia in the United States significantly declined from 11.6% in 2000 to 8.8% in 2012 (see Good News! Dementia Out, Clarity In for The Aging).
The bad news is the substance of this article is a consequence of an ever-increasing aging population. For some, a strong family history can be a contributing influence. There is no cure for AD and we are, at present, unable to prevent it.
But, we can support families and make strides in planning and intervention— especially if detected earlier. Research is currently underway and what discoveries await us around-the-corner may hold great promise.
- CDC’s Morbidity and Mortality Weekly Report (MMWR): Deaths from Alzheimer’s Disease — United States, 1999–2014.
- CDC Newsroom: US Death Rates from Alzheimer’s Disease Increased 55 Percent from 1999 to 2014.