On Sept. 30, KET aired a forum examining Alzheimer’s disease and other forms of dementia. Host Dr. Wayne Tuckson and guests discussed new research into the causes of Alzheimer’s and progress on treating the disease. They also offered advice on how to help loved ones diagnosed with Alzheimer’s and dementia.
Here are four takeaways from the program:
1. Alzheimer’s disease is the leading cause of dementia in the United States. It affects all demographics, but not equally, and diagnoses are on the rise.
Alzheimer’s disease is a progressive neurological condition for which there currently is no cure. It occurs when abnormal levels of a protein called beta-amyloid clump together and form plaques that attach to neurons in the brain, which halts their ability to transmit information. This causes memory loss and changes in behavior, cognition, and social skills. The Alzheimer’s Association estimates that approximately 6.9 million Americans will be diagnosed with Alzheimer’s disease this year.
“We think about dementia as a broad, overarching term. It simply means there’s a change in cognition, memory, language, attention, and other areas to the degree that we need help with our day-to-day activities,” says Dr. Greg Cooper, chief of neurology and director of the Memory Center at the Norton Neuroscience Institute. “Alzheimer’s disease is a particular cause or type of dementia. It’s really the most common type and accounts for 60 to 80 percent of all cases of dementia.”
“Alzheimer’s is an equal opportunity destroyer,” says Dr. Gregory Jicha, a professor in the department of neurology at the University of Kentucky College of Medicine and the Sanders-Brown Center on Aging. While diagnoses are primarily made among people over the age of 65, the disease can affect people as young as their 40s.
Alzheimer’s cuts across all categories of race, gender, educational level, and income, but certain groups are more susceptible to developing the disease. Cooper explains that Hispanics and African Americans have risk factors for Alzheimer’s that are roughly twice as high as Caucasians. He says new research indicates this higher risk is caused more by socioeconomic factors such as lack of access to health care, poor nutrition, and the prevalence of air pollution within minority communities than by genetics.
Part of the rise in Alzheimer’s diagnoses is due to breakthroughs in detecting risk factors and early warning signs, says Cooper. Diagnoses have also risen as the average lifespan of Americans has increased in recent decades and as the population subset of those age 65 and older grows. The cause of death for most Alzheimer’s patients is due to complications from the disease during its final stages when complete infirmity sets in, Cooper explains, most commonly an infection such as pneumonia.
While Alzheimer’s is the main cause of dementia, Jicha says another form called vascular dementia is also prevalent in Kentucky. Vascular dementia occurs when blood flow to the brain becomes constrained, resulting in problems with memory, speech, and motor skills along with behavioral changes.
Other types of dementia include Lewy Body dementia, which is caused by excess deposits of a specific type of protein (called Lewy bodies) in the brain, and frontotemporal dementia, or nerve cell loss in the brain’s frontal lobes.
“When we approach a patient with memory complaints that may be impacting their daily function, it really is the job of whatever medical professional you’re reaching out to, to try to really identify the underlying disease,” Jicha says.
2. Many risk factors for Alzheimer’s disease and other forms of dementia can be controlled. It’s important to be aware of warning signs that dementia may be developing, but the final diagnosis will be made by a medical professional.
According to Cooper, there are two primary risk factors for Alzheimer’s that we all share and can’t avoid – age and family history. According to the Alzheimer’s Association, an individual who has a first-degree relative (a parent or sibling) with Alzheimer’s is at a higher risk for developing the disease, and having an additional first-degree relative with Alzheimer’s elevates the risk even higher.
Still, both Cooper and Jicha say that other risk factors for Alzheimer’s are modifiable – things we can change either through adopting a healthy lifestyle or through medicine. Several of these pertain to cardiovascular health.
“Many of our chronic health conditions – hypertension, diabetes, high cholesterol – we know are risk factors for vascular disease, but they’re also risk factors for Alzheimer’s disease, and that interplay is very, very important.” Jicha says. “Often, we’re struggling with, how can I avoid Alzheimer’s, how can I keep my brain healthy? One of the best ways, perhaps one of the strongest influences we can have, is by making sure if your blood pressure is too high, if your cholesterol is too high, if your sugar is starting to edge up there, let’s get those under control. We not only treat those chronic conditions but help our brains to age healthier and delay or avoid diseases like Alzheimer’s.”
Other modifiable risk factors include avoiding social isolation and, on a social policy level, decreasing the amount of air pollution in communities, Cooper says. While there isn’t a cure for Alzheimer’s, Cooper notes that a recent report from the Lancet Commission on Dementia declared that 45 percent of dementia cases are preventable.
How can we prevent it? Jicha says that we can do it by adopting healthy habits – from diet and exercise to building and keeping strong personal relationships. All are essential to maintaining overall health and cognitive function. “The number of ways we can lower our risk is likely to expand in the future as we learn more and more about this disease,” he notes. “But there’s a lot we can do, and we should really be proactive.”
Occasional memory loss is normal, especially in short term memory, but changes in patterns of thinking and/or behavior that grow worse over time should be taken seriously, says Shannon White, executive director of the Alzheimer’s Association of Greater Kentucky and Southern Indiana. Her organization has a 10 Warning Signs of Alzheimer’s list on their website, which include confusion of time and place, new problems in speaking or writing, losing the ability to find misplaced items, and increasing social isolation.
“A lot of people come up to me and say, ‘I keep losing my keys – do I have Alzheimer’s?’” she says. “It isn’t if you’re losing your keys, it’s forgetting what this hunk of metal is in your hand.”
At Norton Neuroscience Institute’s Memory Center, Dr. Cooper and his colleagues diagnose Alzheimer’s disease starting with what he calls “old fashioned medicine,” talking to patients and learning about their personal history and how their life has changed recently. “And with this condition, it’s particularly critical to talk to an informant, a loved one or family member,” he says.
“As silly as it sounds for me to say, if I’m developing Alzheimer’s disease, there’s a good chance I don’t remember that I don’t remember something,” Cooper continues. “What I really want to hear from is family. What sorts of changes are they noticing? In my world, 90 to 95 percent of (diagnosis) comes down to taking that careful history and understanding what’s going on.”
In addition to the consultation, Cooper will conduct a brain scan to rule out other causes for dementia such as a stroke or tumor. And he says he’s excited about new developments in detecting Alzheimer’s through biomarkers. These are different proteins in the blood or spinal fluid that can lead to Alzheimer’s disease or other forms such as Lewy Body dementia.
3. Treating Alzheimer’s and other dementias is done on an individualized basis, and breakthroughs in understanding the disease have led to far more effective strategies for delaying the onset of Alzheimer’s and/or slowing its progression.
Dr. Jicha says that when most people think of an Alzheimer’s patient, they immediately conjure up a mental picture of someone who is uncommunicative and needs constant help with everyday tasks. But he says many people who are diagnosed during the early onset of the disease only need help with minor tasks, although they still should be closely monitored. There have been patients at Sanders-Brown who lived with Alzheimer’s for over 20 years after diagnosis, he notes, although for most people the disease progression extends 10 to 12 years.
Newer treatment protocols for patients with Alzheimer’s are resulting in better outcomes, says Cooper. Until recently, he notes that the primary goal for neurologists was to manage Alzheimer’s symptoms in order to maintain as much functional independence and quality of life for the patient as possible.
“Certainly, that’s still true – we’re trying to manage the symptoms, whether it be issues with memory, anxiety, or depression,” he acknowledges. “Now, over the last year to two years, we’ve had some exciting developments. We now have medications available to us that slow the progress of this disease.”
Cooper notes that these new medications are the first ones deemed effective in slowing Alzheimer’s, but they do not work on all patients. He adds that continuing research will lead to far more effective treatment protocols in the near future. Cooper and Jicha say they’re excited by the prospect of using genetic biomarkers (mentioned above) as the basis of an early detection model for Alzheimer’s. Once developed, such a model could identify Alzheimer’s predisposition in individuals and allow physicians to, one day, provide medications that block the formation of amyloid plaques in the brain well before symptoms begin.
Jicha says thousands of doctors and scientists around the globe are focused finding a cure for Alzheimer’s disease. The scope of treatment continues to expand with each new research discovery, and he foresees a time when various medications and therapies might work in combination to make Alzheimer’s a manageable disease.
“We’re beginning to think and adapt in sort of the cancer (treatment) model,” he says. “A single agent isn’t going to slow (the disease), but maybe a combination of agents in the future will increase that slowing, buying people many more years. And eventually, we may get to the point where we slow the disease so efficiently that it may never take someone down and they may end up dying of natural causes.”
“Alzheimer’s was discovered in 1906, and these treatments that have come out in the last two or three years are the first drugs that treat the disease, not just the symptoms,” Shannon White says. “So it’s just such an exciting time, and I think that as medicine and research continues, it will become even more exciting.”
4. While receiving a diagnosis of Alzheimer’s disease will require significant adjustments for the patient and his or her family, there are strategies and support services that can help maintain a good quality of life for much longer than is commonly thought.
When a loved one develops dementia, the impact within families can alter previous relationships and lead to conflict, according to Vanessa Williams-Harvey, a registered nurse and author of the book “I Remember.” After her mother was diagnosed with Alzheimer’s, Willams-Harvey and her four siblings worked to find consensus and share the responsibilities of caring for their mother. But as her mother’s condition worsened,
the children realized that moving her to a memory care facility was necessary.
“There were a lot of disagreements, there were a lot of tears, there was a lot of guilt, even, in making that decision,” Williams-Harvey says. “Ultimately, we had to do what was best for our mother and her safety, and what was best for our family. We understood that there were some things we just had no control over.”
Shannon White from the Alzheimer’s Association of Greater Kentucky and Southern Indiana says many families struggle with the decision to hand over caregiving responsibilities for a loved one. In addition to the emotional connection, there is the high cost of nursing homes to consider. She advises family caregivers to explore options for outsourcing care and find the environment that will be the most comfortable for their loved one. Her organization partners with AARP on a website, Community Resource Finder that lists comprehensive resources for assistance.
Unfortunately, for both patient and caregivers alike, depression is often associated with Alzheimer’s and dementia. “I’ve always felt that Alzheimer’s disease should not be considered a disease of the individual but a disease of the family,” Cooper says. “To take it a step farther, we know that by supporting the caregiver, we can alleviate some of that stress and maybe some of that depression – and the patient, the loved one, actually does better when we care for the caregivers.”
Providing this support should begin immediately after diagnosis and include mental health assessments of both patient and caregivers, says Ashley Lee, a licensed clinical social worker. She advises that these screenings should occur when the patient is still capable of normal or near-normal cognition.
“That way, you’re able to get a true picture of that individual, and you’re able to get a history of do they have any mental health diagnoses, do they struggle with anxiety or depression, or have they had any history of suicidal ideation,” Lee says. “I would also say that for people caring for the patient (with dementia), it’s important for their primary care providers to look out for anxiety, depression, and isolation in them, because we need to kind of head this off at the pass to know what things need to be in place (for them), some sort of support, care, respite, or other services.”
Building a supportive environment for patient and caregiver is crucial and should start at the beginning of an individual’s and family’s journey, says Jicha. This can be done, he says, “by having acceptance, by not labeling them as end-stage when they’re really just recently diagnosed and quite mild, by reinforcing the quality of life that they can have, and by providing resources so that the caregiver can share in the quality of life.”
“The first message is, you are not alone,” White says. “We have support groups, we have educational programs, we really try to wrap our arms around families after they get the diagnosis.” This assistance includes early-stage programs that provide information to families upon diagnosis and communal events such as potluck meals, all the way to caregiver instructions designed to address specific behavioral changes in the patient as their condition worsens.
“Alzheimer’s is a terrible disease, and this is a really hard journey to go on, but there is a ripple of hope, and we feel it,” White adds. “One of our favorite people came into our office last Friday to start her Louisville Walk to End Alzheimer’s team, and she said, ‘I’m on one of the new treatments, I’ve never felt better, and I feel confident that I’m going to live to 100.’”
“What’s important about that is she is living with this disease,” says White. “She’s driving and living by herself, and we’ve seen her cognitive decline slow down because of these new treatments.”
