Data released this week from the U.S. Centers for Disease Control and Prevention show Alzheimer’s death rates have spiked 55 percent from 1999 to 2014.
And, of course, while that news is sad on its surface, it has implications even more far reaching than the obvious.
Caring for a person with Alzheimer’s can obliterate a family. The disease can cause the loved one to go into what essentially is a vegetative state, yet they may live 20 years or even longer that way.
Modern medicine has caused many elderly Americans to live much longer, but many are not necessarily living better.
Because people with Alzheimer’s (and most all types of dementias) require around-the-clock care, families often find themselves bankrupt even before the patient dies.
Not only do the patient’s funds become depleted, but also the caregiver’s in some cases. Families have no choice but to bring the loved one back home or to leave them in a nursing home that accepts Medicaid.
There is no financial assistance for anyone from government programs when someone goes into a long-term care facility for more than about 100 days until they are completely broke.
More People With Alzheimer’s Dying at Home
The CDC data showed that not only did the number of Alzheimer’s deaths skyrocket 55 percent, but also the number of deaths at home leaped from 14 percent to 25 percent.
While caring for a loved one with Alzheimer’s often is the choice most comfortable for families, it really isn’t the most affordable. In cases where there are large families or an extremely large support network, people could take shifts.
Some Alzheimer’s patients, and especially some people with other rare but debilitating forms of dementia, can become extremely violent. Caring for someone in that condition inside the home requires a tremendous amount of help, and it doesn’t come cheap depending on the level a person needs.
“As Alzheimer’s disease progresses, caregiving becomes very important,” said Christopher Taylor, lead authors and epidemiologist in the division of population health at the CDC. “Supportive interventions can lessen the burden for caregivers and improve the quality of care for people with Alzheimer’s disease.”
Alzheimer’s Just One of Many Devastating Dementias
There are dozens of dementias beyond Alzheimer’s, including frontotemporal degeneration, Lewy’s Bodies, Parkinson’s, Vascular Dementia and many others. There’s even an early-onset version of Alzheimer’s.
Some of these dementias, such as aphasia-variant frontotemporal degeneration, or FTD, can begin affecting patients in their 30s or 40s, and the patient can be deceased within a few years. They lose the ability to speak and understand language rather suddenly after leading previously normally lives, and then they begin a rapid decline to vegetation. The impact of this disease on families and the types of assistance they might need is much different from that of Alzheimer’s disease.
The other type of FTD, behavioral variant, also begins to show symptoms in patients as early as their 30s or 40s. These symptoms manifest themselves as behavioral problems. Patients begin to behave inappropriately, say and do outrageous things and can become violent. Still, they are able to maintain at-home independence with minimal assistance sometimes for decades.
They become vegetative at the end, and usually die within a few years of that happening. But they might live into their 70s or beyond, behaving in ways that many people cannot and will not tolerate.
Not only do they end up needing long-term care, but some places won’t even take them due to the patient’s behaviors. While the patient may only need to spend a few years in a nursing home, the impact on the family – while different – is also extremely severe and unusual.
Caregivers Often Die Before the Patients Themselves
According to the CDC, Alzheimer’s is the sixth leading cause of death. Among those 65 and older, it is the fifth leading cause of death.
“Millions of Americans and their family members are profoundly affected by Alzheimer’s disease, said CDC acting director Dr. Anne Schuchat. “Our new study reveals an increase in the incidence of Alzheimer’s disease-related deaths. As the number of older Americans with Alzheimer’s disease rises, more family members are taking on the emotionally and physically challenging role of caregiver than ever before. These families need and deserve our support.”
According to a study by the AARP Public Policy Institute, caregivers provided $450 billion in free care in 2009 alone. That number will only skyrocket with 11,000 baby boomers per day turning 65.
The toll on caregivers can be devastating financially, emotionally and physically. There are dozens of studies showing the negative impact on the health of caregivers, including at least one that said many older people who are caregivers for people with dementia often die before the patient themselves. The study was published by JAMA in 1999 – again, a situation that is only getting worse in an aging America.
According to former geriatric nurse and national caregiving expert Diane Carbo, “At the end of life, when this is all over, most (caregivers) end up financially devastated. They have lost their job, they were negatively impacted financially as a defenseless individual.”
“So many of them become ill or die,” Carbo said. “Those are the issues that I see we are not addressing.”
Younger caregivers often find themselves struggling with drug and alcohol problems while trying to cope with caring for mom and dad.
A professional journalist nearly 30 years, David Heitz started his career at the Quad-City Times in Davenport, Iowa before moving to Los Angeles. He led the Glendale News-Press to best small daily newspaper in the state (CNPA) as managing editor and also worked as executive news editor of the Press-Telegram. He worked briefly as deputy news editor of the Detroit News before returning to the Quad-Cities, where he has worked as a freelance medical writer since 2012 for several national websites. He recently purchased his childhood home and says he truly is “living the dream.”