In Health: Understanding Dementia and Alzheimer's Disease
“Alzheimer’s usually isn’t caught early.Symptoms start an average of 13 to 15 years before diagnosis, and patients generally live between 18 months and three years before dying.”
“We need to focus on early detection. We have a good idea of how the
Understanding Dementia and Alzheimer's Disease
Detecting, treating and even one day possibly preventing or curing the disorder is part of the mission of two local physicians.
By valerie vinyard | Photography by James Patrick
One in three.
That’s the number of senior citizens who die each year in America because of Alzheimer’s disease or another form of dementia.
Although dementia isn’t a happy topic, it’s a condition that many will need to live with, either personally or because of friends and family who have it.
Knowledge has improved markedly since Alzheimer’s was discovered in 1906, but the disease continues to devastate families worldwide.
Mindy Fain, M.D., is co-director of the University of Arizona’s Center on Aging. She notes that many people use the term “dementia” and “Alzheimer’s” interchangeably, which isn’t entirely accurate. Dementia is a syndrome that serves as the umbrella term that includes Alzheimer’s and other less-common forms, such as vascular and frontotemporal dementia. Alzheimer’s is the most common form of dementia.
In 2016, the Alzheimer’s Association reported about 130,000 Arizonans were living with the disease. That number is projected to increase to about 200,000 by 2025. The association reported that 2,383 Arizonans died from Alzheimer’s disease in 2013, a 128 percent increase since 2000.
“The longer we live, the greater the chance we’ll get dementia,” says Dr. Fain, noting that Alzheimer’s is the fifth leading cause of death in Arizona. “We have an aging society that will be burdened by it unless together we solve this issue.”
According to the World Health Organization, the number of people living with dementia worldwide is estimated at 47 million and is projected to increase to 75 million by 2030. The number of cases of dementia is estimated to almost triple by 2050.
In the United States, more than 5 million people currently are living with Alzheimer’s, and as many as 16 million will have the disease in 2050, according to the Alzheimer’s Association. Formed in 1980, the association is the leading voluntary health organization in Alzheimer’s care, support and research.
Experts say there are two main reasons for dementia’s growing prevalence: age and the fact that it’s often missed in its early stages.
“Now we live much longer,” says Steven Rapcsak, M.D., Professor of Neurology, Psychology, and Speech, Language & Hearing Sciences at the University of Arizona. “Age is the Number One risk factor.”
Besides age, experts believe that Alzheimer’s is caused by a combination of genetic, lifestyle and environmental factors.
When people hear the word “Alzheimer’s,” they first tend to think of memory loss. However, that is only one of many signs of dementia.
In addition to memory issues, symptoms of dementia include changes in communication and language, judgment and visual perception, along with a decreased ability to focus and perform everyday activities.
From ages 60 to 65, Dr. Fain says there’s about a 1 percent chance of having Alzheimer’s, with its prevalence doubling every five years. By age 85, there’s a 32 to 35 percent chance of being diagnosed.
Though Alzheimer’s generally manifests later in life, the brain undergoes changes early — starting about age 25. Certain genetic tests can reveal a patient’s propensity for having the disease, but most doctors don’t recommend early genetic testing because in most cases there’s still no way to accurately predict who will or will not develop the disease.
Dr. Fain notes, “Early diagnosis is helpful. Even though there’s no cure, it helps patients and families living with dementia.”
Early diagnosis remains elusive, however. Dr. Fain (who turned 65 in September) notes that Alzheimer’s usually isn’t caught early. She says symptoms start an average of 13 to 15 years before diagnosis, and patients generally live between 18 months and three years before dying.
“It’s missed all the time by clinicians,” says Dr. Fain, “and more women than men are affected by Alzheimer’s because they tend to live longer. Primary physicians miss diagnoses of almost 90 percent of persons living with early dementia.”
Dr. Rapcsak offered another reason for the oversight — there’s no easy medical test for it. “Alzheimer’s is a clinical diagnosis. It cannot be conclusively diagnosed with a CAT scan or MRI.” Using the positron emission tomography (PET) imaging technique, doctors can see things more clearly. However, health insurance doesn’t cover the procedure.
Dr. Fain adds that some doctors miss the diagnosis because of a lack of training. She is working to change that. For the past two years, she has led the U.S. Health Resources and Service Administration-funded statewide Arizona Geriatric Workforce Enhancement Program. The program trains health professionals in the assessment and management of people with dementia.
Medical professionals also might think it’s futile to point out the condition because there’s no cure it. That might be changing in the coming years, however, thanks to breakthroughs in research.
Dr. Rapcsak is most excited about the possibility of prevention, noting that the most important advances have been in preclinical detection. He says that doctors today can use biomarkers to tell if someone has Alzheimer’s before there are any obvious symptoms.
According to the Alzheimer’s Association, scientists suspect plaques and tangles are what cause cell death in the brains of people with Alzheimer’s. Plaques are defined best as abnormal clusters of “sticky” proteins called beta-amyloid that build up between nerve cells; tangles are twisted protein fibers that form inside dying cells and disrupt essential cell activity. Although most people eventually develop plaques and tangles, those with Alzheimer’s usually have more.
“We need to focus on early detection,” he says. “We have a good idea of how the brain changes. We just have to find a drug that works to remove these abnormal proteins.”
Currently, there are ongoing clinical trials with new experimental drugs to remove those proteins. Dr. Rapcsak cautions that it’s still too early to draw any conclusions but, “There’s hope that we’re getting there.”
For now, people can reduce their risk factors by exercising, being cognitively and socially engaged and managing health issues such as high cholesterol and diabetes.
Some people partake in “brain-training” games, such as crossword puzzles or Sudoku, or they’ll eat certain foods and take certain supplements in the hopes of keeping dementia at bay.
Although those activities can’t hurt, none of them will thwart the disease. Even if people learn to master a game such as Sudoku, Dr. Fain says they simply are teaching themselves to excel at that one type of game. It won’t strengthen overall learning or retention. Dr. Rapcsak notes that diet modifications can be helpful, but they ultimately cannot stop the disease.
That’s not to say nothing can be done to improve patients’ quality of life. Memory care centers help patients and their families deal with the overwhelming task of living with dementia.
“Caregivers suffer physical and emotional stress,” says Dr. Fain. “The family becomes our patient.”
The cost of caring for those with Alzheimer’s and other dementias is estimated to total $236 billion in 2016, increasing to $1.1 trillion in today’s dollars by mid-century. If current prevalence rates remain unchanged in Arizona, the number of people with Alzheimer’s and the services they require will increase by about 60 percent statewide.
Families can help relatives living with dementia by decreasing risks, such as removing guns, shielding them from hazards such as burns, and taking away the car keys.
As the disease progresses, some families choose to relocate their relative to a memory care center that often employs a multidisciplinary approach, which Dr. Rapcsak says is best for addressing psychiatric as well as medical problems along the way.
Dr. Fain agrees that these centers can ease the overall burden, but explains that there’s no magic age for someone to transition to a memory care center.
“These centers are structured for people with dementia and provide a supportive environment,” she says.
When inspecting a memory care facility for a family member, it’s important to see it through the patient’s eyes.
“Don’t get drawn into an environment that’s attractive to you.” Pretty bowls filled with plastic fruit might be suitable décor in some environments, but people living with dementia may mistake the “fruit” as real.
Sometimes the transition to a care center or hospital becomes necessary. As cognitive impairment gets worse, patients become bedridden. The death of brain cells causes patients to become mentally and physically disabled.
Other health issues can develop, such as pneumonia. Ultimately, the cause of death is related to chronic immobility.
In some cases, Dr. Fain says families have the support structure and desire to be able to keep their loved ones at home.
“With the availability of medical house calls and hospice services, sometimes patients living with dementia can die peacefully at home,” says Dr. Fain, who still makes house calls to patients. TL