Caring for people with dementia

Note: In the Nichi Bei Weekly’s Dec. 17, 2020 issue, Dr. Christine Nguyen’s article featured June Yasuhara’s experience caring for her parents, both of whom have dementia. Yasuhara said she thinks dementia is poorly understood, adding, “Not a lot of Asians share about it, and that’s what I’m trying to figure out. Is there still a stigma, something you don’t talk about, or is it because Asians don’t like to bother other people?”

While medical experts have made progress regarding their understanding of and the terminology they use to describe cognitive impairment, stigma and misconceptions remain within the Nikkei community. According to a recent Alzheimer’s Association report, 56 percent of Asian Americans “believe that significant loss of memory or cognitive abilities is a ‘normal part of aging’ rather than being an indicator of disease.”

Alzheimer’s Los Angeles made the “Faces of Caregiving” video project in collaboration with the Keiro Grants Program and the JA Community Foundation to help people understand Alzheimer’s disease and other dementias. The five videos are available in both English and Japanese. Seven Nikkei caregivers shared their stories in hopes of helping others overcome some of the cultural barriers to accessing care and support. Excerpts of their stories follow. To view the video series, visit: alzheimersla.org/Japanese.

Jane Taguchi: “In our community, we don’t talk about those things. … It’s almost as if it’s … shame, like, ‘Oh, you don’t want to talk about sickness, you don’t want to talk about being hurt, you don’t want to talk about anything bad.’ But that’s not good. We need to talk to each other and share experiences, so we can learn from each other. … The more you talk about what’s going on with your own parents … the more you find out your friends … have the same experiences …”

Tamo Ikeda describes caregiving for his spouse and the adjustments they have made in their roles as “an extension of our married life.” Ikeda acknowledged the cultural belief that caregiving is “a woman’s job or onna no shigoto.” In 13 years of caring for his wife, he recalls meeting maybe two other Asian male caregivers in public. Ikeda also addresses the cultural stigma of dementia and how people sometimes use Japanese terms like bakatare (dumb).

Sisters Alice Gunderson, Jane Sasaki and Elaine Knipe shared the lessons they have learned from caring for their mother, including living each day to the fullest.

Cory Shiozaki found that the Japanese expression “shikata ga nai” (it can’t be helped) applied to his mother’s dementia diagnosis. It is a disease that “you have no control over, so you just try to make the best of it.” Shiozaki shares his family’s experience, and how they overcame obstacles and sought out culturally-responsive services.

Eru Gibson recalls how her family noticed changes with her grandmother. Gibson shares how she treated her grandmother with honor and dignity while they sought out her medical attention. Gibson lives in Southern California and is a long-distance caregiver for her grandmother in Japan. (To learn the 10 Common Warning Signs, visit alz.org/alzheimers-dementia/10_signs.)

Experts’ understanding of brain health and memory has changed significantly over the years. For many years, many people believed that adults could not generate new brain cells. However, experts now know that new neurons do form. In the past, “senile dementia” was a common term and diagnosis for people with cognitive impairment. Now, people rarely use the term as medical practitioners are better able to assess for specific types of dementia, and attitudes toward patient dignity have evolved. Additionally, over the past year, the medical community has grown increasingly concerned about the long-term effects of COVID-19 and the stress of the pandemic on the brain.

Dementia vs. Alzheimer’s: What’s the difference?
According to the Alzheimer’s Association, “Dementia is a general term for loss of memory, language, problem-solving and other thinking abilities that are severe enough to interfere with daily life. The characteristic symptoms of dementia are difficulties with memory, language, problem-solving and other cognitive skills that affect a person’s ability to perform everyday activities.”

While Alzheimer’s is the most common cause of dementia, it is a specific disease. Dementia is not a normal part of aging. Alzheimer’s is the most common cause of dementia, accounting for 60 to 80 percent of cases. There is Younger-Onset Alzheimer’s (no longer referred to as Early Onset because the disease process begins long before symptoms appear) and Late-Onset Alzheimer’s. The second most common type of dementia is vascular dementia, which can occur if a stroke blocks an artery in the brain, though there are other causes and risk factors. Vascular dementia commonly affects one’s gait and balance. Lewy Body Dementia and Frontotemporal lobar degeneration are also common.

Recent large autopsy studies show that many individuals may have a combination of Alzheimer’s and other causes of dementia. Dementia can also occur in Parkinson’s disease, before movement symptoms or later in the disease process. These are just some of the more common causes of dementia and they often overlap.

Alzheimer’s Begins Before Dementia
Because Alzheimer’s disease is thought to begin 20 years or more before the onset of symptoms, an estimated 47 million people in the U.S. may have preclinical Alzheimer’s and not know it. Symptoms occur when nerve cells in the “brain involved in thinking, learning and memory (cognitive function) have been damaged or destroyed,” the Alzheimer’s Association states. As the disease progresses, other parts of the brain are damaged and destroyed — eventually affecting basic functions such as walking and swallowing. However, not all individuals with evidence of Alzheimer’s-related brain changes develop symptoms of mild cognitive impairment or dementia.

How is Alzheimer’s Diagnosed?
Although there have been significant advances in diagnostic testing methods for Alzheimer’s — which include brain scans and spinal taps that may detect certain biomarkers of the disease even in its pre-clinical stage — there is no single test that diagnoses Alzheimer’s disease with 100 percent accuracy. Physicians and specialists like neurologists, geriatricians or geriatric psychiatrists, use a variety of tools and approaches to make a diagnosis, including considering: medical and family history, cognitive tests, input from family members, blood work, other tests and brain imaging.

While there is no cure for Alzheimer’s disease, in the U.S. there are five Food and Drug Administration-approved prescription drugs to treat its symptoms. Understanding the available treatment options can help both individuals living with the disease and their caregivers to cope with the symptoms and improve one’s quality of life.

What About Risk Reduction?
A 2020 Lancet Commission report suggests that addressing modifiable risk factors might prevent or delay up to 40 percent of dementia cases. While some risk factors, such as age and genes, can’t be changed, others may be. These include: physical activity, blood pressure, diet, education, smoking, and remaining socially and mentally active.

It is important to note that risk reduction is not synonymous with prevention. However, the Lancet Commission, World Health Organization, Alzheimer’s Association and National Academy of Medicine are all part of many efforts focusing on addressing risk factors to reduce the risk of dementia and cognitive decline.

Although individuals who take measures to reduce their risk may still develop dementia, they may be less likely to develop it or they may develop it later in life than if they had not taken risk reduction steps.

When Dementia-like Symptoms Are Not Dementia
Some individuals may exhibit dementia-like symptoms without the progressive brain changes of Alzheimer’s or other degenerative brain diseases. Some causes of dementia-like symptoms include “depression, untreated sleep apnea, delirium, side effects of medications, thyroid problems, certain vitamin deficiencies and excessive alcohol consumption,” so it is critical to consult a medical professional to determine the cause of symptoms, as these conditions may be reversed with treatment, the Alzheimer’s Association explains.

People with concerns about possible dementia may contact a physician or one of the following resources. An early diagnosis allows people more time to plan for the future, access support services and explore possible treatment options.

Community Resources
National: Call the Alzheimer’s Association 24/7 Helpline at 800-272-3900 or visit alz.org for comprehensive resources and information, and to locate the nearest Alzheimer’s Association chapter. Look for the newly released 2021 report on “Race, Ethnicity and Alzheimer’s” for detailed information and data.

Southern California:
Alzheimer’s Los Angeles: Call 844-435-7259 or visit alzheimersla.org for information about programs and services.

Little Tokyo Service Center: Call (213) 473-3035 (Little Tokyo Office) or (310) 819-8659 (South Bay Office) for information about the Caregiver Support Group.

Rancho Los Amigos/USC California Alzheimer’s Disease Center: 1-562-385-8130 or visit ranchomemoryclinic.org.

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