It’s been more than 100 years since German psychiatrist Aloysius “Alois” Alzheimer described the brain of a patient who was suffering from what we today refer to as Alzheimer’s disease. And yet, this complex brain disorder continues to be shrouded in mystery and uncertainty. However, research scientists are making inroads that may someday lead to a cure for the disease or its prevention. Recent research has also held out promise for more effective treatment options.
Because so many people have Alzheimer’s disease, including, perhaps, some of your family members and friends, we now know more about how it affects those who have the disease as well as those who care for them. Many caregivers have written poignantly about what it is like to care for a loved one with Alzheimer’s disease. In this edition alone, author and poet Frances Kakugawa; broadcast journalist Diane Ako; and Jody Mishan, former coordinator of the State Plan on Alzheimer’s Disease & Related Dementias share their respective experiences as caregivers for a loved one with Alzheimer’s. Although every family’s situation is different, their stories probably have a ring of familiarity among those who have faced or are now facing similar circumstances. However, they speak not only of the challenges of caregiving, but also about their coping strategies, something all caregivers must develop in order to survive the experience, and the wisdom they have gained from caregiving.
The Alzheimer’s Association estimates that 5.3 million Americans of all ages have Alzheimer’s disease in 2015 — about two-thirds of them are women. The disease is the sixth leading cause of death in the United States, and the number of people with Alzheimer’s is expected to grow each year as the number of Americans age 65 years and older continues to expand as the Baby Boom generation transitions into older adulthood. In Hawai‘i, an estimated 64,000 dementia caregivers deliver 73 million hours of unpaid care, according to “Hawaii 2025: State Plan on Alzheimer’s Disease & Related Dementias,” a state report released in December 2013 and updated this past October.
Less understood is what causes some people, and not others, to develop the disease. Researchers know that the brain of a person with Alzheimer’s looks different from that of a person without the disease. The diseased brain has abnormal clusters of protein fragments — called plaques — and twisted microscopic strands of the protein tau, referred to as tangles. Researchers are uncertain about what causes those plaques and tangles to develop in the first place, which has made finding a cure for the disease so elusive. They do know, however, that the highest risk factor is age; in other words, the older you are, the more likely you are to develop Alzheimer’s.
However, not all older people have the disease (indeed, many older adults are cognitively vital and physically active), and there is a smaller group of people in the population who will develop the disease before they reach older adulthood. This is called early-onset Alzheimer’s disease.
There is often a genetic factor involved in those who develop the disease early. The Oscar-winning performance of Julianne Moore in the movie, “Still Alice,” attempted to show the progression of early-onset Alzheimer’s in an otherwise healthy middle-aged college professor. Moore’s character began forgetting familiar words and places, leading her to consult medical experts. Tests confirmed that she had the type of Alzheimer’s that is genetically inherited, but this type of Alzheimer’s is rare and occurs in a very small percentage — less than 5 percent — of total Alzheimer’s cases. The Alzheimer’s Association says that a diagnosis of Alzheimer’s before age 65 may take a while because physicians usually don’t suspect Alzheimer’s in people who are in their 40s or 50s. At any age, a confirmation of Alzheimer’s requires a comprehensive medical examination, and people with signs of the disease should discuss it with their primary care physician as soon as possible.
It is also suspected that Alzheimer’s disease probably starts long before the signs of the disease become apparent. So, a person can be in the earliest stages of the disease without anything seeming to be wrong. If this is the case, it has serious implications for figuring out whether there is anything that can be done while people are younger that can either prevent or slow the progression of Alzheimer’s disease.
Not all cases of dementia are Alzheimer’s disease, so it is important that qualified health care providers do a thorough evaluation if patients show signs of dementia. Other types of dementia include vascular dementia, dementia with Lewy bodies and frontotemporal dementia. But the Alzheimer’s type is the most prevalent by far.
What are the signs of Alzheimer’s disease? The Alzheimer’s Association lists 10 warning signs: 1) Memory loss that disrupts daily life; 2) Challenges in planning or solving problems; 3) Difficulty completing familiar tasks at home, at work or at leisure; 4) Confusion with time or place; 5) Trouble understanding visual images or spatial relationships; 6) New problems with words in speaking or writing; 7) Misplacing things and losing the ability to retrace steps; 8) Decreased or poor judgment; 9) Withdrawal from work or social activities; and 10) Changes in mood and personality.
Individuals may experience one or more of these signs to different degrees. Having these signs does not mean a person has Alzheimer’s, but it does warrant a visit to the doctor’s office for consultation and testing. Memory loss alone does not necessarily mean a person has dementia and, in some instances, may be reversible (e.g., if it is due to a condition that is treatable).
Services and Supports
If you need information or other resources about Alzheimer’s disease, you can call the Alzheimer’s Association’s 24-hour hotline at 1-800-272-3900 or visit its website at www.alz.org. Your primary care physician may also have specific people or places to contact. The Aging & Disability Resource Center can help you locate local resources. The Hawai‘i ADRC phone number is 643-2372 and its web address is
www.hawaiiadrc.org. Senior health fairs are another good place to learn about the array of service providers in Hawai‘i, all conveniently gathered in one place. In addition to the Herald’s “Dear Frances” column (by Frances Kakugawa) and other Herald columns and articles, Generations magazine and KHON2’s Elderhood Project provide regular coverage of topics related to older adults and their caregivers.
Of course, family members and friends can be of considerable support to people with dementia. This informal support can come in many forms, from round-the-clock care at home to regular check-ins on an elder living alone if the symptoms are still mild. However, there are times when at-home care is no longer safe or feasible and other options need to be explored. Another article in this issue explores different residential options for people with dementia.
The Latest Research
As mentioned earlier, the older one is, the higher the risk for developing Alzheimer’s disease. According to the Alzheimer’s Association, “After age 65, the risk of Alzheimer’s doubles every five years. After age 85, the risk reaches nearly 50 percent.”
Family history is another risk factor. Those with a parent or sibling with Alzheimer’s are at higher risk for the disease. The risk also increases if more than one family member has the disease. In cases where Alzheimer’s seems to run in families, genetic or environmental factors (or both) may play a role.
Researchers know that the brain cells of a person with Alzheimer’s disease do not connect or communicate the same way as a person without the disease. This results in problems with memory, learning and communication. The brain becomes inflamed and, eventually, brain cells die and the brain itself shrinks.
In a video that was part of “The Alzheimer’s Project” — a presentation of HBO Documentary Films and the National Institute on Aging at the National Institutes of Health, in association with the Alzheimer’s Association — researchers talked about advances made in Alzheimer’s research over the past two decades or so. By studying the brains of patients with early-onset Alzheimer’s, they better understood the role that genetics played in the overproduction of beta-amyloid, a toxic brain protein, which causes plaques found in the diseased brain of both early-onset and late-onset patients. By identifying beta-amyloid as a common problem in these brains, researchers were able to develop drugs that targeted beta-amyloid as part of their treatment.
In the cases of early-onset Alzheimer’s, in which the early-onset type of the disease was prevalent in families, researchers were able to identify a genetic mutation that led to Alzheimer’s. However, in the late-onset type (in which people typically get the disease in their mid-60s and older), the role of genetics is less clear. It is believed that a combination of certain genes increases the risk for Alzheimer’s.
“We think that there are a lot of different genes that make very small contributions to whether you’re going to get the disease or not,” said Dr. Gerard Schellenberg of the University of Pennsylvania in the HBO documentary. “We call these susceptibility factors. No one single susceptibility gene makes that big of a difference whether you’re going to get it or not, but if you have five or 10 susceptibility genes and you’ve got the bad form of all 10, that’s going to increase your risk.”
Researchers are not clear how many susceptibility genes it takes to cause Alzheimer’s — it could be 20 or 40 — and that is what they are now studying. They want to identify all the susceptibility genes for Alzheimer’s disease.
Genetic research is only one area, albeit an important one, of Alzheimer’s research. In 2005, a scientific journal called Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association was launched to provide a global publication for the worldwide scientific community to share their research findings about Alzheimer’s science. In September 2015, for example, a team of researchers published an article about the benefits of the MIND diet, which they found to be associated with the reduced incidence of Alzheimer’s disease. MIND stands for Mediterranean-DASH Intervention for Neurodegenerative Delay. The MIND diet emphasizes foods, such as green, leafy vegetables (six servings a week); other vegetables (once a day); nuts (five servings a week); berries (two or more servings per week); beans (at least three servings a week); whole grains (three or more servings a day); fish (once a week), poultry (twice a week), olive oil (use as your main cooking oil) and wine (one glass per day). There are also foods to avoid or reduce, such as red meat and cheese. Changes in diet should be discussed with one’s physician, especially if you already have existing health conditions.
There are five medications approved by the Food and Drug Administration to help people with Alzheimer’s disease. They are donepezil (Aricept), which the FDA approved in 1996; rivastigmine (Exelon), approved by the FDA in 2000; galantamine (Razadyne), which received FDA approved in 2001; memantine (Namenda), which the FDA approved in 2003; and donepezil and memantine (Namzaric), which the FDA approved in 2014. It is important to remember that these drugs do not cure Alzheimer’s, and they don’t always work for everyone, but they help to “mask the symptoms of Alzheimer’s,” according to the Alzheimer’s Association. An actual medical breakthrough in drug therapy would treat the disease and stop or delay the cell damage caused by it. Several promising drugs are currently being developed and tested. Future drug therapy may involve a “cocktail of drugs,” similar to treatment for AIDS and cancer. Research advocates continue to seek volunteers for clinical trials of medications and push the federal government for more research funding.
The Alzheimer’s Association also hopes that earlier diagnoses of the disease — before irreversible brain damage and mental decline occurs — could be a significant step in fighting Alzheimer’s. As such, researchers are trying to identify biological markers that indicate Alzheimer’s disease, such as the presence of beta-amyloid and tau levels in cerebrospinal fluid and brain changes that can be seen through brain imaging technology. On a related front, The Alzheimer’s Disease Neuroimaging Initiative seeks to understand the progression of Alzheimer’s disease through brain imaging.
Can Alzheimer’s disease be prevented? Researchers are investing a lot of time and effort into answering this question, but it is not definitively known yet how Alzheimer’s can be prevented. The Alzheimer’s Association says that in the vast majority of cases, the disease probably develops as a result of multiple factors: age, genetics, environment, lifestyle and the existence of other medical conditions. Some of these can be changed, others cannot. While we cannot change our age or genes, we can focus on lifestyle behaviors such as maintaining a healthy weight, getting exercise, eating certain foods and avoiding others, seeking medical care for other health problems and so forth.
Increasingly, family members and caregivers are sharing their stories about how best to help individuals with Alzheimer’s disease live the best quality of life possible under the circumstances. As we await a cure or more effective treatments for the disease, the person-centered approach to helping those with Alzheimer’s disease must remain a top priority. Love, patience, compassion, friendliness and constant reassurance, if needed, will go a long way in helping those who must struggle with this difficult disease on a daily basis as it progresses along a continuum from mild to severe.
Kevin Kawamoto is a longtime contributor to The Hawai‘i Herald.