Deaths from Alzheimer’s disease rose by 55% between 1999 and 2014, according to a new report published in the Centers for Disease Control and Prevention’s (CDC’s) Morbidity and Mortality Weekly Report.
The number of patients with Alzheimer’s disease dying at home has also increased during this same period, from 14% to 25%.
“We would expect an increase in Alzheimer’s disease with a larger population of older adults because we know that age is the greatest risk factor for Alzheimer’s disease, but with these rates increasing in such magnitude, we thought there might be something else going on,” the report’s lead author, Christopher Taylor, PhD, from the CDC, Atlanta, Georgia, told Medscape Medical News.
More people are being diagnosed with Alzheimer’s now because awareness of its early symptoms grows.
“If a person receives a diagnosis from their physician, and then they ultimately die from Alzheimer’s disease, it is more likely that the physician would assign Alzheimer’s disease as the cause of death on the death certificate,” Dr Taylor said.
Increases in the mortality rate for Alzheimer’s disease could also be a result of decreases in mortality rates for competing causes of death, including cardiovascular disease and stroke, “so life expectancy has increased as a result of fewer people dying earlier from cardiovascular events. People don’t usually get symptoms of Alzheimer’s disease until they’re in their mid-sixties, so if someone dies of a heart attack earlier they wouldn’t live long enough to develop the symptoms,” he said.
The other significant finding from the report — that more Alzheimer’s disease patients are dying at home rather than in hospital — points to an added burden for caregivers.
“We don’t know the reasons for this, but we know that people who are in the late stages of the disease are pretty much entirely dependent on caregiving for all their basic needs. A lot of times, the caregivers are family members and friends. We know that this care is intensive, and it is very possible that caregivers would need some assistance. With this increasing number of caregivers we want to make sure that they have what they need to keep themselves healthy, as well as care for their loved ones with Alzheimer’s disease,” Dr Taylor said.
He would like to see more education for caregivers so they would know what to expect throughout the different stages of Alzheimer’s disease, and respite care for caregivers.
“It’s important for caregivers to know where they can go to request respite care and all of the resources that might be available for them to help them care for their relative or friend. The person with Alzheimer’s disease could also have other chronic conditions — they could be diabetic, they could have high cholesterol that has to be managed by the caregiver — so you have to make sure that caregivers are educated on ways to manage such conditions as well as keep themselves healthy.”
Dr Taylor and his team analyzed death certificate data for 1999–2014 using the CDC WONDER online portal for persons whose underlying cause of death was listed as Alzheimer’s disease.
The analysis showed that 93,541 Alzheimer’s deaths occurred in 2014 at an age-adjusted (to the 2000 Census standard population) rate of 25.4 deaths per 100,000 people, a 54.5% increase compared with the 1999 rate of 16.5 deaths per 100,000.
Rates were higher than in 1999 among all age groups and were higher among women than in men and in non-Hispanic whites compared with other racial/ethnic populations.
Most deaths occurred in a nursing home or long-term care facility in 1999 (67.5%) and in 2014 (54.1%). The percentage of patients who died in a medical facility declined from 14.7% in 1999 to 6.6% in 2014.
Deaths at home increased, from 13.9% in 1999 to 24.9% in 2014. An additional 6.1% of patients with Alzheimer’s disease died in a hospice facility in 2014.
“Alarming” Numbers
“The numbers are not surprising but they are alarming,” Keith N. Fargo, PhD, director of Scientific Programs and Outreach, Alzheimer’s Association, Chicago, Illinois, told Medscape Medical News.
“We have actually been following this trend for the last decade and a half, as has the CDC, and there has been a steady increase over that time, to the 55% we see now. I actually think, and the authors of this report might agree with me, that this may even be a little bit of an undercount,” Dr Fargo said.
The age-unadjusted numbers would give a more accurate account of Alzheimer’s mortality, Dr Fargo said.
“The unadjusted numbers reveal the impact of the fact that we are an aging population. The unadjusted number is an 83% increase in death rate, because people are living so much longer, and you have this bolus of people, these waves of people coming through the baby boomers, who are getting older and dying from Alzheimer’s disease. It’s a huge problem and really is unsustainable,” he said.
Dr Fargo agreed that improved treatments for cardiovascular disease and cancer is one explanation for this increase.
“There are probably multiple different explanations that account for some of the increase, but the fact that you are now less likely to die from heart disease or cancer than you were before is a big part of it. People are now living long enough that they are getting other diseases, and one of those is Alzheimer’s disease,” he said.
Physicians are also getting better at recognizing and diagnosing Alzheimer’s disease and recording it as a cause of death on death certificates, Dr Fargo agreed.
However, the fact that more patients with Alzheimer’s are dying at home than in the past is a surprise, he said.
“That’s news to us. At the Alzheimer’s Association, we have not seen the data point to support that. Certainly we do talk to literally hundreds of thousands of people every year on our 24/7 help line, so we hear a lot of crisis calls from people who are dealing with major issues with their loved ones, but this is the first time we’ve seen a data point that is showing that more people are dying at home,” he said.
Caring for patients in the late stage of Alzheimer’s is extremely labor intensive.
“By the time people get to the period when they are going to die, they are really in the late stages of disease, and they are bed bound and they can’t communicate any longer and they can’t feed themselves and they can’t toilet themselves. People have to turn them over so they don’t get bed sores. It’s a really intensive level of care, and for most people in that situation, they really need nursing home care,” Dr Fargo said.
“But nursing homes are not cheap,” he added. “The general public doesn’t know that Medicare does not pay for nursing homes. A lot of people think that Medicare is going to kick in and pay for their nursing home care when they need it, but it doesn’t. Maybe if they spend down their assets they might be able to get Medicaid help for nursing home care, but the fact is, nursing home care is a huge expense that most people are not insured for, even through Medicare.”
Increased deaths at home may be due to the fact that nursing home care is so expensive.
“That is speculation on my part, but it may be part of what we are seeing here. The Association’s reaction is that this really cries out for more study to figure out what’s going on so that we know how to fix it,” Dr Fargo said.
Dr Taylor and Dr Fargo have disclosed no relevant financial relationships.
MMWR Morb Mortal Wkly Rep. Published online May 26, 2017. Full text
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