Of all the incessant requests, it's the ceaseless pleas for sugar-free cough drops that are especially unnerving.
"She'll eat a whole package of 50 in two days," said Sally Miller. The 's.he" Miller is referring to is her 77-year-old mother, Joyce. Formerly outgoing and vivacious - a veritable social butterfly flitting from one activity to the next with an alacrity that would put most people half her age to shame - Joyce is but a shadow of her pre-dementia self.
"It's really frustrating and sad seeing my mother become this way because she's not the woman she used to be," said Miller, who - save for the staff at the Fort Worth-based assisted living facility where Joyce now resides - serves as her mom's sole caregiver. Among her newly acquired compulsions since first showing signs of the disease (i.e., problems with memory loss that progressed over time) about eight years ago, Joyce calls her daughter on the phone "all the time," Miller said. "It's mostly small talk that lasts five minutes. But then she calls back. It's nonstop."
The continual pressure is taking its toll, Miller confides. "It's so hard," she said, the pain in her voice nearly palpable. "I'm not as patient as I should be. I know it's not her fault. … Dealing with her is like taking care of a child. She can't reason anymore."
Already up to her eyeballs in stress, Miller suffered a brutal one-two emotional punch last June with the death of her beloved father from a particularly painful and drawn-out bout of kidney cancer. Her parents had been married nearly 59 years when Joyce's dad passed away.
"Dad took care of Mom before he died, even when he was sick," Miller recalled. Joyce's memory slowly began fading while her husband was still alive. While dad and daughter both noticed her forgetfulness, Joyce initially shrugged it off. "He told me he was so upset because he was going to die first and not be able to take care of Mom. And I said to him, "Don't worry, Dad. I'm going to take care of Mom.""
A Universal Crisis
Although she often feels like the weight of the world rests squarely on her shoulders, Miller certainly isn't alone in her caregiving role. More than 15 million Americans provide unpaid care for a person with Alzheimer's disease or other dementias, according to the Alzheimer's Association. An estimated 5.4 million Americans - one in eight age 65 and older; nearly half of all people age 85 and older - have Alzheimer's disease. And a recent study in the medical journal Neurology noted that as more and more greying baby boomers reach the elderly ranks, that number is expected to nearly triple to 13.8 million by 2050.
Even for those whose métier isn't math, the impact is as apparent as it is alarming.
"Alzheimer's is, in my opinion, the single-largest healthcare crisis in the United States and globally due to the financial burden and the societal/family burden," said Sid O"Bryant, Ph.D., associate professor of medicine at Fort Worth's UNT Health Science Center. "The impact on individuals, families and the healthcare system makes it one of America's greatest medical, social and economic challenges."
The cost of the disease - in terms of caregiver outlays and the overall financial load - is more than our healthcare system can manage, O"Bryant says. Last year's data from the Alzheimer's Association puts aggregate payments for healthcare, long-term care and hospice for individuals with Alzheimer's and other dementias at $200 billion. But that's mere pocket change for what's to come, O"Bryant stresses.
"It will exceed $1 trillion a year within the next few decades," he said. "It can basically bankrupt the healthcare system if we don't do something about it."
O"Bryant, who also lends his expertise to UNT's Institute for Aging and Alzheimer's Disease Research - one of the most federally funded Alzheimer's basic science research groups in Texas - is one of the only people on the planet to develop a blood test to detect the disease.
"From a clinical approach, my work focuses on an Alzheimer's disease blood test and if it can be used as a frontline screen by primary care practitioners," he said. "That [screen] would then be used to get a patient to a specialist, similar to what's being done for cancer and cardiovascular disease."
Early detection, O"Bryant notes, is especially significant since Alzheimer's sneaks in so silently, slowly yet systematically destroying different regions of the brain (usually) over several years. During the early stages, patients retain their faculties and, thus, are still able to make sound decisions about their future. It's during the later phases that Alzheimer's zaps their cognitive abilities, making them more like a child in an adult's body.
Dissecting the Disease
A progressive illness that continues to flummox the medical community, Alzheimer's is the fifth-leading cause of death of people age 65 and older in the United States. It has no known cause and no cure. "By the time it shows clinical signs, it has already caused massive brain loss," O"Bryant said. "And you can't rebuild brain cells."
The only certainty? It is always fatal.
Characterized by microscopic plaques and tangles in the brain that lead to the degradation of nerve cells, Alzheimer's is at once fascinating, frightening - and unequivocally complex. The answer, O"Bryant contends, lies in first deconstructing the disease and then in identifying treatments specially tailored to the individual. This personalized medicine approach closely resembles what physicians currently do for cancer and cardiovascular disease patients, he notes.
"Pulling it apart is what we believe will be the key to beating Alzheimer's disease," O"Bryant said. "Alzheimer's is very complicated. There are many causes. And that complexity is actually the key to dealing with it. You have to pull it apart, identify the different pathways and then treat them."
Absent the work of researchers like O"Bryant and teams like UNT's IAADR, though, all the talk about treatments and cures will be just that: talk.
"There will never be a cure without the science and the research," said O"Bryant. A psychologist by training who lost his grandmother to Alzheimer's, he knows all too well the viciousness of the disease.
"I view that we have one thing in life: our sense of self," O"Bryant said. "That's our core and something no one can take from us. But Alzheimer's disease does - slowly. It robs memories and takes the one thing you are never supposed to lose - it takes you. That's why it's so devastating."
Knowledge is Power
Education, as well, is another critical component to address, stresses O"Bryant's colleague Janice Knebl, DO, MBA, professor of internal medicine at UNTHSC and one of the nation's leading medical educators in geriatrics.
"It's such a difficult illness," she said. "The more people know what they're dealing with, the more empowered they are."
Empowering patients, their loved ones and the public at large is an all-day, everyday job at the Alzheimer's Association North Central Texas Chapter.
"Whether you access us on the phone, in person or online, we are the go-to community resource to turn to for basic information, education and support," said executive director Theresa Hocker. The association also has a 24-hour telephone helpline: 800.272.3900. "We want people to call sooner rather than later, even if they're just concerned or have a question."
Program manager Shelly Young concurs. "One of the things we find with Alzheimer's and dementia is that they're like a moving target; they can be different every day," she said. "Don't wait until a crisis. Be proactive. People report a higher satisfaction in their life if they get the information they need."
All of the association's services are free and confidential, and everyone is welcome. "There are no income requirements," Hocker said. "We serve anyone."
A fair portion of the staff's work involves case management, where they work one-on-one with families, assessing their needs and then matching them with relevant resources.
"We go into the home and paint a picture of what their needs are and then connect them to the programs and services they need, working with the caregivers until the very end," noted caseworker Gail Phills.
Much of the association's work, in fact, involves supporting the caregiver, Phills notes. "Caregivers are so overwhelmed, so we make phone calls for them," she said. "We do a lot of hand-holding for our caregivers."
But before it can be supported and educated, the community first has to be cognizant of the disease, its ramifications and its outcomes.
"Building community awareness is key," said Susanna Luk-Jones, director of programs and services. "The drugs we have don't stop the disease, but they can slow down the symptoms so they'll have a better quality of life. So early diagnosis is also key. And it buys time for families to prepare and know their loved one's wishes when they can still communicate them. It's good to have these conversations early."
"They don't lose their abilities overnight," Hocker added, "and still can have a lot of say-so over their life and their future."
Journeying Together
Also central to the process: an all-for-one method, where the patient, family members, doctors, nurses, social workers and everyone else involved all work together to formulate a care plan from Day One, Knebl says.
"I feel strongly about the comprehensive approach because this is a long journey," she said. "It helps families and patients plan and helps us start the 10- to 20-year journey."
As director of the James L. West Alzheimer Center for nearly a decade, Susan Farris is all too familiar with that journey. "It's very satisfying work, but don't get me wrong - there are sad days," she said. "We work with people who have a fatal disease. We see the toll it takes on the families. And that's hard."
Opened in 1993, the West Center was the third in the nation built to help people with Alzheimer's and other dementias, along with their families. Roughly 100 patients reside full-time at West in one of five "households," with another 25 enrolled in the adult day program. The center also offers free caregiver education classes for people who tend to their loved ones at home. Led by education director Jaime Cobb, they're offered twice weekly for two hours each. "We trained 1,600 families in one year," Farris noted.
The West Center's mission involves correct diagnosis, top-tier care and a high level of understanding of the disease, Farris says. "We find out precisely what's wrong and work to find the exact care. Then we tailor the treatment for the individual person's level of functioning because Alzheimer's is progressive and each person is at a different stage in their journey," she explained.
The youngest person they've served at the center was a member of the adult day program, Farris said. He passed away at age 39 from Alzheimer's. The oldest lived at the center for 12 years; she died at 109.
"Early-onset Alzheimer's tends to progress rapidly, and the people who have it lose the ability to function physically very quickly. They need 24-hour total care early on," Farris said. "For others, their disease may progress over a 10- to 12-year period, and they may never need residential care or might need it for the last year or two."
Either way, the number of people afflicted with Alzheimer's and the countless more who eventually will be stricken is 's.hocking," Farris said. "The research field is booming; there is a push for a cure. But in the meantime, there are millions of families who need help now."
Forgotten … But Not Gone
No matter how it strikes, though - whether it hits with unbelievable swiftness or takes its own sweet time - memory loss and dementia are not - repeat, not - a routine part of the aging process, our experts emphasize.
"Memory loss is not normal," Knebl said. "And there is so much fear [of it] out there. But there is help." Again, time is of the essence. Because it tends to advance over a relatively lengthy stretch of years, slowly pilfering memories and capacities, patients don't lose everything at once. It's so important, our experts agree, to seize that window of opportunity as soon as something seems amiss. Because once it closes, it's shut for good.
Further complicating matters, not everyone who has dementia has Alzheimer's, Knebl adds, and many types of dementia exist - all of which require a different treatment. As such, an accurate diagnosis is absolutely crucial.
What's also imperative, our sources all say, is that - no matter how thorny things get - caregivers and others must keep this in mind: While loved ones with Alzheimer's are undeniably different from the people they used to be, they still have emotions. They feel happiness. They feel pain. They feel frustration. Even embarrassment. But the point is, dementia patients may suffer the loss of their memories, but somewhere deep inside, at least a portion of their essence still remains.
"I've been an administrator for 25 years and worked with people with dementia in one capacity or another the entire time," Farris said. "What fascinates me is unlocking the key to that person's being because they're still in there."
On any given day at James L. West, Farris can be found spending time with residents - she knows them all by name, as well as their likes, dislikes and backgrounds - and tailoring their talks in ways that sometimes help spark deep-seated memories. During one particular afternoon, she visited with a lady in the late stages of the disease, gently engaging her in a companionable chat about fabric. (During her pre-dementia days, the 80-something-year-old had a keen interest in textiles.) Although she may not be able to respond verbally in an intelligible manner, it's clear the woman relishes the company. Her eyes sparkle. Her smile lights up the room.
"Finding them within the disease and bringing them joy and reasons to live is what keeps me coming back every day," Farris said. "All of our staff members love it as much as I do. It's very satisfying work."
Alzheimer's Association staffers feel the same.
"Yes, the disease chips away at them, but that shouldn't change how we treat them," Young said. "We want them to have dignity and respect."
"That person is still there," Hocker added, "and we can't discount that they have emotions and feelings."
Just because they have Alzheimer's or some other brain-sapping malady doesn't mean life stops when treatment starts, Phills reminds. "Let's do as much as we can, as long as we can. That's the motto of our early-stage support group," she said. "They need to continue to live life."
And Sally Miller? She couldn't agree more. "You need to give them hugs, hold their hand, tell them you love them. Don't push them away. Even though they're mentally declining, they still have emotions," she said. "Maybe the way Mom used to be isn't there anymore. But her soul is."
