Medically reviewed by William T. Hu, MD, PhD on May 29, 2018 — Written by Brandi Koskie and Whitney Akers
There are currently 5.7 million Americans and 47 million people worldwide living with Alzheimer’s. That’s expected to increase by 116 percent in high-income countries between 2015 and 2050, and as much as 264 percent in lower-middle and low-income countries during that time period.
Alzheimer’s is the costliest disease in the United States. Its annual raw expense is more than $270 billion but the toll it takes on patients and caregivers alike is incalculable. A substantial reason that Alzheimer’s doesn’t cost more is thanks to the 16.1 million unpaid caregivers who’ve taken on the management of their loved ones’ disease. This selfless task saves the nation more than $232 billion annually.
One in every 10 Americans aged 65 or older is living with Alzheimer’s disease or related dementia. Two-thirds of those affected are women. The average life span after diagnosis for someone with Alzheimer’s is 4 to 8 years. However, depending on several factors, this could be as long as 20 years. As the disease progresses, each day presents more challenges, expenses, and strain on caregivers. These primary or secondary caregivers often take on the role for reasons that range from duty to cost.
Overwhelming and inconvenient truths of Alzheimer’s disease
The overwhelming truth about Alzheimer’s is that a majority of caregiving falls to women. Whether they see it as a privilege, a burden, or a necessity, two-thirds of the primary unpaid caregivers of those with Alzheimer’s are female. More than one-third of these women are the daughters of those they care for. Among millennials, female grandchildren are more likely to assume the role of caregiver. In general, caregivers are spouses and the adult children of those they care for more than any other relation.
That’s not to say that men aren’t involved. Professional caregivers are quick to point out that they see plenty of sons and husbands taking on this work, too.
Overall, the majority of caregivers are sacrificing their own health, finances, and family dynamic for the sake of their loved ones. Nearly three-quarters of caregivers reported that their own health has declined since taking on care responsibilities, and one-third have to miss their own doctor’s appointments to manage care of their loved one. Gen X caregivers experience the greatest negative health effects. Overall, though, caregivers are a stressed-out group, with 60 percent experiencing anxiety or depression. Imagine the difficulty in caring for another person so fully when your own mind and body are in desperate need of care.
For every impact caregivers feel in their own health, there’s a financial repercussion to match. One of every two caregivers report that their finances or career have been negatively affected by their responsibilities, reducing current funds and limiting retirement contributions.
The gross majority of caregivers are married with children living in their homes and hold full- or part-time jobs. It shouldn’t be assumed that caregivers were naturally available because they didn’t have anything else going on. To the contrary, these are individuals with full lives who take on one of the greatest feats. They often do so with grace, fortitude, and not a lot of support.
In addition to the bulk of at-home care, these individuals lead the charge on initiating medical evaluations and making key decisions about the financial, medical, legal, and overall well-being of those for whom they provide care. This includes making the call to keep 75 percent of those with dementia at home — either in the patient’s own home or the caregiver’s home.
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