June is national Alzheimer’s Awareness Month and an opportunity for the Office of Vital Records to examine its impact. Alzheimer’s disease is the sixth-leading cause of death in Minnesota and the United States. It is the only cause of death among the top 10 in the nation that cannot be prevented, cured or even slowed. In 2015, 1,782 deaths, 4.2% of all Minnesota deaths were caused by Alzheimer’s disease. In 2013 and 2014, 3.5% and 3.9% of all Minnesota deaths were Alzheimer’s related deaths. According to the American Alzheimer’s Association, deaths due to Alzheimer’s are expected to continue to increase dramatically.

Alzheimer’s disease is a degenerative brain disease and the most common cause of dementia. It was first described by German psychiatrist and neuropathologist Dr. Alois Alzheimer in 1906. According to the National Institute of Neurological Disorders and Stroke, dementia, unlike Alzheimer’s, is not a specific disease but a neurocognitive disorder characterized by a decline in memory, language, problem-solving and other cognitive skills that affect a person’s ability to perform everyday activities. In Alzheimer’s disease, neuronal damage eventually affects parts of the brain that enable a person to carry out basic bodily functions such as walking and swallowing. Ninety-five percent of people with Alzheimer’s disease and related dementias have one or more additional chronic conditions such as  coronary heart disease, diabetes, chronic kidney disease, and others.

Alzheimer’s impact

* The rising prevalence of Alzheimer’s disease and related dementias has profound social and economic implications. More women than men have Alzheimer’s disease and other dementias. Of the more than five million people age 65 and older diagnosed with Alzheimer’s in the United States, 3.2 million are women and 1.9 million are men. This difference may be attributed to the higher longevity of women versus men rather than a gender-based predisposition. Every 67 seconds someone in the United States develops the disease.

* In 2015, an estimated 5.4 million Americans had Alzheimer’s and other dementias; the estimated cost to the nation was $226 billion. Researchers predict as many as 16 million Americans will have Alzheimer’s disease by 2050.

* Alzheimer’s disease is one of the costliest chronic diseases to society. Average per-person Medicare spending for people age 65 or older with Alzheimer’s and other dementias is three times higher than for seniors without dementia. Medicaid payments are 19 times higher.

* Studies indicate that people age 65 and older survive an average of 4 to 8 years after a diagnosis of Alzheimer’s disease, yet some live as long as 20 years with the condition.

Cause of death for the record

According to the Centers for Disease Control, National Center for Health Statistics,  84,767 people died from Alzheimer’s disease in 2013 (the most recent year for which there is published data). Alzheimer’s is considered the cause of a person’s death if the death certificate lists the disease as the underlying cause of death.  Minnesota Registration & Certification (MR&C) allows the certifying physician to record multiple causes of death for a decedent and to arrange them so that the causal or etiological relationship of the medical conditions that finally led to the death are recorded. The cause of death that initiated all other causes or conditions, as recorded by the physician, is the underlying cause of death for most deaths.

Specificity is important regardless of the cause of death

Proper completion of a cause of death is critical; families and public health need accurate, specific cause of death data. Specificity allows more precise coding of causes of death and better data for researchers and public health monitoring. 

Unspecific diagnoses like ‘dementia’ or ‘stroke’ make it difficult to categorize deaths and develop statistical information on cause of for public health surveillance and research. Physicians who provide the cause of death should document the type(s) of Alzheimer’s, dementia, and any behavioral disturbances in the cause of death statement in the death record.  Below are examples of well-constructed cause of death statements.

Example 1

Line A - Adult failure to thrive

Line B - Alzheimer’s dementia

Example 2

Line A - Natural causes

Line B - Alzheimer’s dementia, vascular dementia

Line C - Stroke

Example 3

Line A - Adult failure to thrive/declining functional status

Cause of Death Part II - Alzheimer’s dementia, coronary artery disease

The Minnesota Department of Health (MDH), Division of Community and Family Health, monitors and analyzes birth data collected during birth registration. Staff use the data shared from the Office of Vital Records (OVR) for many public health purposes including following up with at-risk mothers and infants, accurate reporting for supplemental nutrition, and other programs including birth defects.

MDH’s Birth Defects Monitoring and Analysis Unit is particularly interested in vital record data and other data that can help families. The idea for improvement sprouted in 2014. “We knew that we were not identifying all of the birth defects cases in Minnesota because we have many small, independent birth hospitals that we hadn’t approached about reporting to us. We decided to focus on getting non-reporting hospitals on board”, reported Birth Defects Program Supervisor Barbara Frohnert. “We serve children and families; every child with a birth defect that’s not reported to MDH represents a missed opportunity for connecting a family to important services.” The Birth Defects Program staff took a data-driven approach. They:

• examined the reporting data on hospitals and births, 
• decided to track the percentage of Minnesota births that the program received  for monitoring, and
• identified and set priorities by region and population. 

First, birth defects epidemiologists reviewed the most recent annual birth file from OVR to identify birth hospitals that the program hadn’t yet contacted about reporting children who likely have a birth defect. Birth defects epidemiologists then looked for birth records which had one of the congenital anomalies reported and entered into the Minnesota Registration & Certification system (MR&C) by the birth registrars at these facilities. A team of staff split the list of outstanding birth hospitals and contacted each one by phone and email. Understanding each hospital’s unique barriers enabled staff to help identify and implement solutions. Staff also reviewed death certificates for children to find those where the cause of death is related to a birth defect. By using both birth and death records, the program can make sure that all possible cases are identified and that their families are connected to the services they need.

As of January 2016, the percentage of births monitored for birth defects  increased from 87 percent (July 2014) to 96 percent. With more than 69,000 births in Minnesota every year, this represents a significant number!

“The Birth Defects Program continues to work with the remaining hospitals and monitor birth coverage data,” Frohnert said. “Looking at the data helped us focus on the most meaningful measure.” See the MDH’s Birth Defects Monitoring and Analysis Unit website for more information or email Barbara Frohnert, supervisor, at barbara.frohnert@state.mn.us.