There are emotional, physical, and financial challenges to caring for a loved one with Alzheimer’s. And that burden disproportionately falls on women.
Alzheimer’s disease is the most common cause of dementia. It progressively affects a person’s memory, judgment, language, and independence.
There are currently 6.9 million Americans and 55 million people worldwide living with Alzheimer’s. That’s expected to increase by 116% in high-income countries between 2015 and 2050 and as much as 264% in lower-middle and low-income countries during that time period.
Alzheimer’s is the most expensive 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 over
One in every nine Americans ages 65 or older is living with Alzheimer’s disease. Two-thirds of those affected are women.
The average life expectancy after diagnosis is 8 to 10 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.
Healthline set out to better understand caregivers — how Alzheimer’s has impacted their lives and the promising developments on the horizon that could change the Alzheimer’s landscape.
We surveyed nearly 400 active caregivers, representing millennials, Gen X, and baby boomers. We also interviewed a dynamic group of medical and care experts to best understand the constraints, needs, and unspoken truths of living with and caring for someone with Alzheimer’s disease.
Here are some of the main findings and themes discovered about Alzheimer’s disease:
All statistics presented without a source are taken from Healthline’s original survey data.
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 Alzheimer’s caregivers are female.
More than one-third of these women are 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.
“It’s as if women are expected by society to be the caregivers,” says Diane Ty, project director of the Global Social Enterprise Initiative and AgingWell Hub at Georgetown University’s McDonough School of Business.
She says that since many women have previously taken on the role of primary caregiver to children, their siblings or other family members often assume they’ll take the lead in Alzheimer’s care.
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 dynamics 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 the care of their loved one.
Gen X caregivers experience the greatest negative health effects. Overall, though, caregivers are a stressed-out group, with 60% 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.
If there’s a silver lining, the intimate view of a loved one aging with Alzheimer’s is prompting more caregivers (34%) to be tested earlier for the disease’s biomarkers, something millennials are more proactive about than older generations.
Having seen the impact of the disease, they’re more willing to take steps to prevent or delay the disease. Experts encourage this behavior as it can have a major impact on the onset and progression of Alzheimer’s.
New research proposes a switch from the established general diagnostic criteria to instead focus on identifying and treating the disease preimpact, which allows for better understanding and treatment.
In other words, rather than diagnosing Alzheimer’s at the stage when dementia is noticeable, future work may focus on asymptomatic Alzheimer’s changes in the brain.
While these advancements are promising, the approach is only intended for research right now. But it could have a massive impact if adapted in general treatment for preventive measures.
This could allow researchers and clinicians to see Alzheimer’s-related changes in the brain 15 to 20 years before we currently diagnose Alzheimer’s. This is significant because detecting changes sooner could potentially help identify and guide early stage intervention points.
For every health-related impact caregivers feel, there’s a financial repercussion to match.
One in two caregivers report that their responsibilities have negatively affected their finances or careers, reducing current funds and limiting retirement contributions.
“I’ve talked to family members who were making choices that were severely damaging their future financial independence in order to do what their family was asking of them today with regard to caregiving,” remarks Ruth Drew, director of information and support services for the Alzheimer’s Association.
The vast 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 had nothing else going on.
On 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 providing the bulk of at-home care, these individuals lead the charge in initiating medical evaluations and making key decisions about the financial, medical, legal, and overall well-being of those they provide care for.
This includes making the call to keep 75% of those with dementia at home — either in the patient’s own home or the caregiver’s home.
Alzheimer’s is one of the top 10 leading causes of death. There’s currently no known way to prevent, slow, or cure this disease.
The Food and Drug Administration (FDA) recently removed the dual-endpoint requirement for clinical trials, opening the door for more research into Alzheimer’s and its treatment. In addition to a shift in regulation, scientists are looking to research Alzheimer’s and its identification with biomarkers rather than waiting for symptoms to appear.
This strategy is promising for treatment and early detection. It also stands to teach scientists more about how Alzheimer’s develops and exists within the brain.
Scientists are currently using spinal taps and brain scans in the research setting to explore these early indicators.
“We don’t know anything that can prevent Alzheimer’s, but we’re looking at the things that might reduce your risk for cognitive decline,” says Mike Lynch, director of media engagement at the Alzheimer’s Association.
While many of these new discoveries, treatments, and preventions won’t be at play for treating those who currently have Alzheimer’s, they can make a drastic difference in what the disease looks like 10 to 20 years from now by taking proactive measures that delay the disease and its progression.
If you’d like to make a difference, consider supporting organizations that directly impact caregivers and those they serve at Alz.org and Caregiver.org.