Family Members Likely To Contract Prion Disease
Although Alzheimer’s disease affects both men and women, the condition is gaining attention as a women’s health issue. There is no known physiological link between gender and development of the disease, but statistics show that more women than men are affected. According to the Alzheimer’s Association, almost two-thirds of Americans diagnosed with Alzheimer’s disease are women, as are more than 60 percent of caregivers for people with Alzheimer’s.
“Alzheimer’s disease is certainly a women’s issue,” says Ruth Drew, MS, LPC (licensed professional counselor), director of Family and Information Services for the Alzheimer’s Association. “Women are at the epicenter of the Alzheimer’s crisis.” Because the disease has a potentially devastating impact on both those diagnosed and their caregivers, Alzheimer’s awareness is essential for anyone, man or woman. But with greater impact among women, it is most certainly a key women’s health concern.
Alzheimer’s fits into a category of cognitive, or mental and reasoning, disorders known as dementia. The Alzheimer’s Association (alz.org) defines dementia as a “decline in mental ability severe enough to interfere with daily life.” There are several forms of dementia, but Alzheimer’s is the most common: it comprises 60 to 80 percent of dementia cases. The Alzheimer’s Association reports that there are more than 5 million Americans living with the disease and that it is the sixth leading cause of death in the United States.
Alzheimer’s is generally a disease of aging; the majority of patients are age 65 or older. It is not, however, a normal part of aging. Younger individuals can also be affected: about 200,000 people under age 65 are living with the disease.
Though both women and men can develop Alzheimer’s, the disease affects more women than men. Women’s estimated lifetime risk of developing Alzheimer’s at age 65 is 1 in 6 compared with nearly 1 in 11 for men.1 To put Alzheimer’s in perspective in the spectrum of women’s health, it is a greater health risk among older women than breast cancer: the Alzheimer’s Association states that women in their sixties are about twice as likely to develop Alzheimer’s during the rest of their lives as they are breast cancer.
According to Drew, three known risk factors for Alzheimer’s include advancing age, family history, and being a woman. While we have identified these risks, we do not entirely understand how they work.
Advancing age, Drew says, is the greatest known risk factor. “The likelihood of developing Alzheimer’s doubles about every five years after age 65. After age 85 the risk reaches nearly 50 percent,” she explains.
“Those who have a parent, brother, sister, or child with Alzheimer’s are more likely to develop the disease,” Drew explains. “The risk increases if more than one family member has the illness.”
As for the higher risk among women, Drew says that this is in part because women tend to live longer; but,she adds, “recent research suggests that there may be additional explanations.”
“Alzheimer’s is a disease that attacks the brain and causes problems with memory, thinking, and behavior,” Drew explains. This “attack” on the brain involves physical changes— brain plaques (abnormal clusters of protein fragments that build up between nerve cells) and tangles (twisted strands of protein) in dead and dying nerve cells. The plaques and the tangles interfere with connections between brain cells and ultimately cause cell death; this process is responsible for the symptoms and the progression of Alzheimer’s.
All forms of dementia involve brain cells and changes to the brain, but doctors can identify Alzheimer’s by the type of brain damage and where in the brain it occurs. Alzheimer’s is associated with distinguishing proteins in the plaques and the tangles, and damage generally begins in a region of the brain called the hippocampus, which is responsible for memory and learning.
Though the disease is widely known for advanced symptoms, such as not recognizing family members and a tendency to become lost or disoriented, Alzheimer’s is a progressive condition. This means that it starts with less severe signs—sometimes subtle enough to blame on stress, fatigue, or a passing illness—and progresses to more-severe stages. There are trademark symptoms of Alzheimer’s, but the disease tends to differ from patient to patient.
As the brain plaques and tangles increasingly interfere with brain cell connections, symptoms of Alzheimer’s become more pronounced, progressing from no impairment and mild decline, to moderate and moderately severe decline, to severe and very severe decline. The National Institute on Aging (nia.nih.gov) describes “memory problems” as one of the initial symptoms. You may also start to see patients having trouble finding the right words and accomplishing complex tasks, showing poor judgment and mood changes, as well as withdrawing from activities.
These early changes, however, are not terribly significant. “In the early stage, people with Alzheimer’s disease can still do much of what they did before, with some assistance from family and friends,” Drew says.
As Alzheimer’s begins to progress, patients have increasingly more trouble, with issues such as getting lost, misplacing objects, using poor judgment, failing to complete daily tasks, having difficulty with money and finances, repeating questions, exhibiting personality and mood changes, and experiencing hallucinations, delusions, and paranoia.
“In the middle stage, people have more-profound challenges with memory, thinking, and behavior, and they need much more help,” Drew explains. She adds that ongoing changes can affect depth perception, orientation to time and place, and the ability to drive. Middle-stage patients may have difficulty with reading, math, telling time, and language as well. “They may become anxious and agitated when others don’t see the world as they do,” she explains, “and they may become disoriented in familiar places.”
As Alzheimer’s progresses, patients are increasingly dependent on care. “Their care is eventually around the clock,” Drew says, explaining that late-stage patients will eventually need help with all activities of daily living, such as eating, dressing, bathing, and walking. They also have difficulty remembering familiar people and being able to express themselves in words and may experience physical health issues such as weight loss, seizures, skin infections, difficulty swallowing, and lack of bowel and bladder control.
Early diagnosis of Alzheimer’s provides the best chance of effective management. Although there is no cure and the disease cannot be reversed, there are ways to help patients and their families cope. With early diagnosis, patients and families can start learning about the disease and preparing for the future—making plans for care and important financial and legal matters.
Diagnosis of Alzheimer’s often involves a series of steps because there is no single test for it. Drew says that the process can include the following:
- Mental status evaluation to assess sense of time and place; ability to remember, understand, and communicate; and ability to do simple math problems
- A series of evaluations that test memory, reasoning, visual-motor coordination, and language skills
- A physical examination that includes nutritional status, blood pressure, and pulse
- An examination that tests sensation, balance, and other functions of the nervous system
- A brain scan to detect other causes of dementia, such as stroke
- Laboratory tests to screen for physical problems other than Alzheimer’s disease
- A psychiatric evaluation, which provides an assessment of mood and other emotional factors that could cause dementia-like symptoms or may accompany Alzheimer’s disease
“Currently there are no treatments to slow down, stop, or cure Alzheimer’s,” Drew explains. As a result, “treatment” is more a matter of management, meaning using drug and nondrug methods to improve quality of life and help patients cope with symptoms. Caregiver education is often an essential part of nondrug approaches.
“There are medications that can help alleviate symptoms to a degree, for a period of time,” she explains. Specifically, medications can help improve communication among brain cells in some patients, which may help with memory loss and other cognitive issues. Examples include drugs known as cholinesterase inhibitors, such as Aricept® (donepezil hydrochloride [HCl]) and the drug Namenda® (memantine HCl). These therapies do not stop the disease from progressing, but they can help improve quality of life for patients.
Drew says that certain healthy lifestyle measures may also improve the well-being of people with Alzheimer’s: “Eating a low-fat diet rich in fruits and vegetables, exercising regularly, and staying mentally and socially active may all help protect the brain.”
Drew also says that there is strong evidence linking brain health to heart health. “This connection makes sense,” she explains, “because the brain is nourished by one of the body’s richest networks of blood vessels, and the heart is responsible for pumping blood through these blood vessels to the brain.” As such, people with Alzheimer’s may benefit from heart health measures like controlling weight, blood pressure, cholesterol, and blood sugar.
Because approved medications for Alzheimer’s symptoms are limited, many approaches to treatment involve nondrug therapies that focus on caregiver understanding of the patient’s challenges, needs, and triggers for cognitive and behavioral issues, sleep disturbances, anxiety, and other concerns. The Alzheimer’s Association suggests the following “coping tips.”
- Make sure the patient is comfortable and that basic physical needs are met.
- Avoiding confrontation.
- Respond to requests.
- Consider possible causes for issues, such as stimulating events and other disruptions.
- Maintain a regular schedule for meals and sleep.
- Help the patient get adequate exercise.
Compassion, says Drew, may be one of the best strategies. “Throughout the disease people with Alzheimer’s retain a sense of self,” she explains. “They respond to warmth and human connection.” Many patients are also soothed during difficult times with a security object—something soft andcomforting, such as a pillow, quilt, or stuffed animal.
With clinical trials and research into greater understanding of Alzheimer’s disease under way, the medical community is hopeful that it can find more-effective treatment and even a cure or prevention strategies.
“Many new approaches to treatment are under investigation worldwide,” Drew says. “We don’t yet know which of these strategies may work, but scientists say that, with the necessary funding, the outlook is good for developing treatments that slow or stop Alzheimer’s.”
To this end there is now government policy to support progress in Alzheimer’s disease research. President Barack Obama signed the National Alzheimer’s Project Act (NAPA) in 2011, which calls for, according to the National Institutes of Health, “an aggressive and coordinated national plan to attack Alzheimer’s disease and improve care and services.” The NAPA initiative was backed up in 2012 with the Department of Health and Human Services National Plan to Address Alzheimer’s Disease, a framework that identifies challenges and outlines actions to promote research and improve patient care.
Along with this encouraging initiative, current research is providing leads toward greater understanding of the disease as well as its prevention and treatment. Here are some examples of recent findings.
- Results released in February 2014 indicate that low doses of the antidepressant drug Celexa® or Cipramil® (citalopram) might help relieve agitation among Alzheimer’s patients.
- Cognitive training may help Alzheimer’s patients with mental functioning, including memory, according to a study published in January 2014. Participants who received cognitive training reported less difficulty with daily tasks than those who did not receive training.
- Researchers are also making progress in understanding risk factors. Late in 2013 the journal Nature reported on a study that had linked several rare genetic variants to Alzheimer’s.
- Findings in another fall 2013 report may help researchers develop new treatment strategies by shedding light on how Alzheimer’s develops: a study identified 11 new genes linked with certain biological pathways involved in the development of the disease. Together the findings point to possible therapeutic targets to prevent or delay the progression of the disease.
While experts in the Alzheimer’s community, like Drew, are hopeful that the promise of research and increasing support for awareness and improving care will deliver, for now our best strategy is education and continued advocacy.
“Everyone with a brain needs to know that Alzheimer’s can affect them,” Drew says, as it is likely that— as patient, caregiver, friend, or family member—the disease will affect each of us. As for advocacy to bring about essential research progress and improvement to care, she says, “that includes pushing for more research, more education of the medical community and healthcare workers, more education and support for caregivers, more options for families, and more options for people living with the disease.” And with the heavier burden of Alzheimer’s on women, we need to keep the disease in the women’s health conversation.
Alzheimer’s Disease Caregiving
Mary Margaret Lehmann describes herself as “a wife, a mother, a grandmother.” In 2009 when her husband, Ken, was diagnosed with Alzheimer’s, she added “caregiver” to that list. Her experience has been filled with challenges but also incredible joy.
By taking on the role of caregiver for Ken, Mary Margaret has accepted a massive responsibility that can bring real challenges. The Alzheimer’s Association explains that with the physical and emotional burden of caregiving, caregivers run the risk of significant healthcare costs of their own, often experience high stress levels, and have an elevated risk of depression. Many caregivers have to leave their jobs to meet the demands of caregiving, as well. Because more women than men are caregivers, women are more vulnerable to these complications.
When Mary Margaret began her journey as a caregiver, she quickly learned that she would have to redefine herself and—to some extent—her relationship with Ken. “I think of myself as 100 percent wife/care-partner/caregiver,” she says. She is always on duty: “I am compelled to monitor, oversee—to be watchful and aware of everything he does.”
The most difficult part of caregiving, Mary Margaret says, is personal. “The biggest challenges I find are the role reversals, having to make decisions myself,” she explains. “I am still learning to balance the fine lines that define wife, care-partner, and caregiver.”
Mary Margaret is meeting the challenges of caregiving with a great support system—friends, family, and medical and professional resources. Ken also continues to be a source of strength, as she keeps in mind lessons learned during their life together. “I am grateful for my husband, who has taught me to live one day at a time, one minute at a time—to be present.”
Mary Margaret has found that, as a caregiver, she needs to care for herself as well. “I have learned the importance of first taking care of myself,” she explains. While some caregivers might struggle with making time for themselves—feeling that it is secondary to caring for their loved one—Mary Margaret says that the opposite is true: by caring for herself (even with simple treats like a pedicure), she is a better caregiver. “When I feel good, everyone around me feels good.”
Despite the extensive difficulty of caregiving, Mary Margaret is finding rewards in the role. She says that she and Ken have a new appreciation for their lives: “We no longer take life for granted or are complacent. We have identified what is really important in life and embraced that.”
Mary Margaret participates in several caregiving support groups, where she has found that 90 percent of participants are women. She says that this community is “nurturing, compassionate, sensitive, and empathetic”—qualities that she explains, while not exclusive to women, are essential to mothering and carry over well to caregiving.
Mary Margaret reminds her community of Alzheimer’s caregivers that “there is life after a diagnosis.” She acknowledges that there are hard days and grief and that it is okay to take time to process the challenges and the setbacks. But she encourages others to remain focused on the positive: “Seek joy in each day.”
Though diagnosed with a form of dementia other than Alzheimer’s disease, Terry Berry has become deeply involved in Alzheimer’s issues. She is an adviser for the Alzheimer’s Association’s National Early-Stage Advisory Group and, due to early-stage dementia, knows firsthand the challenges of living with a cognitive disorder.
Terry was diagnosed with younger-onset dementia in 2011 at the age of 56. She says that prior to diagnosis she was known as “passionate” and “high energy,” and she maintained a full and fast-paced life in Richmond, Virginia. In addition, she was on the other side of the dementia experience—as a caregiver for a grandmother living with the disease—and she worked for a senior care organization.
Terry first noticed signs of dementia about a year before diagnosis. “I just didn’t feel connected [to my family],” she explains, “like there was some invisible wall between us.” She says that she was also having trouble reading and would catch herself becoming forgetful. And she began having trouble at work—her handwriting declined, and she had to take more notes to follow meetings and phone calls.
“I knew something was terribly wrong,” Terry says. And when she received final notice on an electricity bill, she realized it was time to get a medical opinion.
After a journey from her family doctor to a neurologist and neuropsychologist and eventually to a few university neurology departments, Terry was diagnosed with cognitive decline and, later, early-onset dementia.
“Dementia. There it was,” Terry says. “That word that scared me so much!” Major changes followed: Terry lost her job, her home went into foreclosure, and she left Richmond to live with her daughter’s family.
But Terry says she has “pushed through.” She explains: “I do what I still can, and I try to feel like I am still helpful. I try to find things I can still do that bring me pleasure.” But she struggles every day to stay on task, to focus, and to accept that she cannot do everything she used to do. Terry has handed over her finances to her daughter and no longer drives, and her family keeps an eye on her in the kitchen or anywhere else that forgetfulness could cause a problem.
Terry sought a support resource for the unique challenges of younger-onset dementia and found the Alzheimer’s Association. “With the support of the Alzheimer’s Association, I started a support group for those affected with early-stage and early-onset dementias and their caregivers.
“As an advocate,” she continues, “I have chosen to use my voice while I still can. It gives me a sense of purpose and a reason not to give up.” Some of the issues she has encountered include a need for more education about dementia and Alzheimer’s for healthcare providers and for comprehensive care plans that coordinate health, education, and support resources.
Terry encourages other newly diagnosed patients to get involved with dementia and Alzheimer’s disease issues. “I encourage others to consider advocacy as a way to feel empowered and engaged in their own lives. There are ways to learn to live well with dementia.”
Preview and order the eBook now to defend yourself and your family. There is no prevention and no cure for Alzheimer’s disease, but smart nutrition can save your life. If you have brain disease, nutrition is your best hope for treatment.
Gary Chandler is a prion expert. He is the CEO of Crossbow Communications, author of several books and producer of documentaries about health and environmental issues around the world. Chandler is connecting the dots to the global surge in neurodegenerative disease, including Alzheimer’s disease, Parkinson’s disease, Creutzfeldt-Jakob disease, chronic wasting disease and other forms of prion disease.