The number of Americans with Alzheimer's disease and dementia is estimated to soar to 7.1 million by 2025, a 40 percent increase from the 5.1 million affected this year. The picture doesn't look much better for 2050, when the number of people with Alzheimer's disease is projected to increase to 13.8 million.
The number of deaths from Alzheimer's disease has also increased significantly. From 2000 to 2013, there was a 71 percent increase in deaths attributed to Alzheimer's disease and Alzheimer's is the only disease among the top 10 causes of death in Americans that can't be prevented, cured or slowed.
Many people don't realize how progressive the disease is, says Beth Kallmyer, vice president of constituent services with the Alzheimer's Association. Those with it live an average of eight years after their symptoms are noticed by others, while some can go on for 20 years, depending on their age and other health conditions, according to the Alzheimer's Association.
"Many people still just think it's a disease of memory. You lose some memory, forget where you put your keys," Kallmyer says. "[But] we know it's so much more than that. It goes beyond memory, executive functioning and judgment. These progresses impact your ability to do things every day, like getting dressed, bathing yourself and eating. Simple activities of daily living become a significant challenge."
Brood is among the millions who are assisting someone with Alzheimer's with these tasks each day. The association's report indicates that in 2014, friends and family members of those with the disease provided an estimated 17.9 billion hours of unpaid care; two-thirds of caregivers are estimated to be women, and 34 percent are over 65. The report also shows that 250,000 children and young adults between ages 8 and 18 provide help to someone with Alzheimer's disease or dementia.
"No one tells you they forget how to sleep, how to feed themselves, how to go to the bathroom. My mom, a year ago, stopped taking herself to the bathroom and doesn't go on her own anymore. Every few hours, we have to take her," Brood says.
Although her father is more aware, Brood says her mother – who was diagnosed at only 59 – functions at the level of her 19-month-old nephew. New research suggests that women with mild cognitive impairment experience a decline in cognition that's twice a fast compared with men with the condition.
The disease has taken a toll on Brood as well. "I like to think of myself as 29, and that all those years are being stored somewhere for me," she says of the time since her parents' diagnosis. "Sometimes, I hope I can go back and reclaim all of that. That's a more challenging aspect."
These feelings aren't unusual among Alzheimer's caregivers, says a psychologist and author.
"The caregiver, being at home with that person for a long time, specifically having to take care of them, they're in a situation that can go on for 10 to 15 years. It's no wonder their caregivers are at risk for social isolation, physical illness and financial problems," Vincent says.
The Alzheimer's Association report states that nearly 60 percent of Alzheimer's and dementia caregivers rate the emotional stress of caregiving as high or very high; meanwhile, 40 percent have been diagnosed with depression.
It is important for caregivers to seek help to ease their burden. They can't do it all by themselves. The person you're caring for is no longer the same parent, spouse or adult you once knew. You're dealing with someone whose brain damage is such that he or she is really only a child now. Perhaps an older child or teenager at first. They will age backwards, and will eventually become a toddler and finally a baby," she explains. That's why caregivers have to set aside expectations about what their parent could once do. "That was the past. That person is in a different reality now, and the caregiver has to adjust to them where they are because they cannot get back to the caregiver's reality.
For more information on Alzheimer's care for your parent, contact Spring Arbor.