Facing Alzheimer’s: The Perspective of Three Experts

The Alzheimer’s Association of Hawaii estimates that by 2025, there will be 35,000 Alzheimer’s disease patients over the age of 65 in the state. Almost as many elderly patients will suffer from other related dementias associated with hardening of the arteries or Parkinson’s disease. As our population ages, planning and delivering care to dementia patients is sure to touch your life.

It is time to lift the veil and reveal the face of this disorder that lurks in the shadows. Let’s shine a bright light on the habits that can help us protect our brains, accurate resource information, clinics that specialize in early diagnosis and treatment, and new therapies on the horizon. If you learned about Alzheimer’s five years ago, you might be surprised at what our experts have to say.

“Alzheimer’s disease is most challenging because it is the only ‘top’ 10 disease in our country without a cure.”

Dr. Liow, why is early diagnosis of Alzheimer’s disease so important?

Every 69 seconds, another person in the U.S. is diagnosed with Alzheimer’s-type dementia, progressively decreasing brain function that is not necessarily associated with aging. On the mainland, most dementia patients have Alzheimer’s disease. However, in Japan vascular dementia with decreased circulation in the brain is more common. Our blended ethnic community has increased incidence of vascular-related dementia compared to the mainland. Because we treat vascular dementia differently from Alzheimer’s, early treatment and prevention with supported lifestyle changes can reduce the risk of stroke. Sometimes blood flow to the brain can be improved, restoring normal brain function. Particularly in Hawai‘i, it is crucial that persons with early memory loss be evaluated and diagnosed quickly to rule out treatable vascular disease, and other reversible and treatable disorders that mimic dementia.

While we do not yet have a cure for Alzheimer’s disease, current medications can temporarily slow the progression of the disease and keep the patient functioning normally longer. More can be done to preserve the remaining brain cells when treatment begins early. We would like the patient to help plan their treatment and plan ahead for the time when they will need full-time care. Early on, when they are still functioning, they can make their wishes known, participate in clinical trials and research, and help prepare advanced care directives.

What other conditions mimic Alzheimer’s?

We had a patient who was erroneously diagnosed with Alzheimer’s seven years ago and told there was nothing that could be done. She was left to deteriorate and was in a wheelchair be
cause she could no longer navigate. Her brain MRI showed a treatable condition of normal pressure hydrocephalus, meaning excessive fluid in brain. When we treated her by draining the fluid surrounding her brain, she could walk normally again. Other conditions like vitamin B-12 deficiency, hypothyroidism, and clinical depression affect cognitive function so that people may think they have dementia. But these disorders are treatable. Therefore, it is important that all memory loss be evaluated early for reversible causes.

How do you diagnose Alzheimer’s or other dementia at Hawaii Pacific Neuroscience clinic?

Well, it is not an easy diagnosis. First, we obtain an accurate patient history, comparing past and present behaviors, moods and cognitive function. We need to test brain function with electrical activities using EEG (electroencephalogram) and look for structural abnormalities with brain MRI. Because of the complexity of the brain, many of the tests and interpretation of results requires consultation with a specialist skilled in this field. At Hawaii Pacific Neurosciences, we bring the specialists to the patient in our “one-stop shop” neuroscience center where patients consult with a multidisciplinary team of neurologists, geriatricians, neuropsychologists, psychologists, wellness coaches and nutrition specialists all in one location, so caretakers do not have to travel to different locations for these specialized tests and treatments. All the testing is performed in one facility, and interpreted by our specialists trained in the field of memory and dementia. This way, we can provide an accurate diagnosis quickly and recommend an individualized treatment plan or if appropriate, a research or clinical trial.

How do you treat Alzheimer’s disease?

Currently, we have some medications that alter transmission of signals between cells in the brain to temporarily slow the progression of Alzheimer’s. Our goal is to see patients before they become forgetful, because treatments are most effective early on. Our goal is to begin nutritional regimens and brain exercises to stimulate different parts of the brain and increase blood flow to the brain before the patient loses the capability to retain or re-train memory using brain mapping and brain stimulation exercise. Reminiscent and music therapy help keep patients functioning at normal levels longer. We want patients working on-site with our psychologist, neuropsychologist and cognitive specialists, and wellness nutrition coach.

We have also been successful in bringing clinical trials of new research medications and therapies for dementia to Hawai‘i, joining the worldwide community in advancing the science and understanding of Alzheimer’s and the quest for better treatments and a cure. Much research has been directed toward blocking the aggregation of amyloid protein precursors. These proteins lock together to form “plaques” between brain cells and can block the normal connections we make when thinking. Researchers are also looking at ways to dissolve tau proteins that form in the brain and pinpointing how brain cells die.

Hawaii Pacific Neuroscience is one of 46 sites in U.S. selected to conduct clinical trials with drugs that work on novel drug receptors. In addition to slowing memory loss, we also hope these drugs will help modify the behaviors that are so troubling to patients, families and caregivers.

Why does dementia patients’ behavior change?Is it a personality change?

We normally have “filters” we use to hold back inappropriate words and behavior and choose responses that match the situation we face. Choosing, deciding and planning our actions and words are cognitive functions of the brain. As dementia progresses, the patient loses the cognitive ability to exercise their natural filters — they cannot control their thoughts and actions — so their behavior and conversation become inappropriate. Patients may become agitated without cause, react in unexpected ways or believe their delusions. As a result of agitation, they may ask questions over and over. It is helpful for families to remember that inappropriate behaviors are the result of the cellular breakdown of the brain — not the intentions of the patient.

We believe that the demanding physical and psychological needs of dementia patients require a team approach to diagnosis and therapy. Our care delivery model is to have a geriatrician (board-certified physician who specializes in elderly patients) examine the patient physically and also assess for any advance-care planning that may be needed. This exam is followed by an evaluation by a neurologist specializing in neurodegenerative disease who develops an accurate diagnosis and looks for reversible causes of dementia. Patients then undergo memory tests administered by a neuropsychologist. Based on the results of the testing, our psychologist or cognitive specialist designs “brain games,” brain stimulation and mapping exercises that maintain brain the patient’s brain health. The family is is involved in treatment, nutrition and wellness coaching, as they often cook for the patients and can support lifestyle modifications.

At Hawaii Pacific Neuroscience, we now follow over 2,000 memory loss and dementia patients from all the Hawaiian Islands and Pacific Rim. Families know that they can come to one place for all their specialists’ appointments, specialized tests, latest treatments and compassionate memory care. Our groundbreaking research and clinical trials bring hope to those who have failed all other therapies and allow Hawai‘i to join the worldwide scientific community in the search for new treatments for these disorders.

“ It takes a team to provide care to each Alzheimer’s patient, whether at home, in a care home, foster home or nursing home. I call the members ‘care partners.’ They can’t make the patients happy, but they can make them comfortable and support their wishes, no matter how tough it gets.”

As a social worker, how soon do you become involved with Alzheimer’s patients?

This is a disease that impacts everyone. I consult with patients, and their families and friends at every stage of their path — from diagnosis to end-of-life. In fact, even before diagnosis, I teach public seminars all over Hawai‘i, encouraging friends and families to help forgetful people get diagnosed and seek treatment.

Early on, patients can participate in their care plan, envision how they want to live out their days and communicate that to their care partners. Some forgetfulness is caused by chemical imbalances or other disorders that can only be tested and treated by a physician. Maybe your fuzzy thinking is due to deficiencies of vitamin B12 or vitamin D. Perhaps a tumor or a slow thyroid is causing your confusion. Memory loss is also a symptom of depression. All these problems can be treated and possibly reversed, so it is very important for persons with memory loss or behavior changes see their primary care physician and get a full check up. I recommend that they go with a care partner — someone who will go the distance and help them look at all the possibilities.

Some patients believe that because there is no treatment for Alzheimer’s disease, there is no point to going to the doctor. At the moment, there is no cure, but there are treatments and medications that help patients perform normal functions longer. I say, “Don’t wait; don’t worry.” Take a proactive stance. All treatments work better when patients get started at the very first signs of memory loss. Creating new diet and exercise habits can improve blood circulation to the brain. Creating more opportunities for social engagement and mental/emotional/spiritual stimulation will exercise every part of the brain and improve overall thinking. Learning new things stimulates new pathways in the brain. Some foods protect brain cells from damage.

The FDA has approved some medications to treat the early and moderate stages of Alzheimer’s disease and age-related dementia. These medications may help maintain cognitive function temporarily. Again, treatment needs to start early.

If diet, exercise and social engagement improve memory loss, do they prevent dementia?

It looks that way. I give a talk called “Healthier Habits for a Healthier You” that shows the great benefits of the Mediterranean and Dash diets for heart and brain health.

It’s very easy to fall into the habit of eating a high-fat diet. Seniors sometimes lose their sense of smell and taste and wind up eating salty and sugary foods that play havoc with high blood pressure and diabetes. Changing your eating habits can improve your current health, increase longevity and keep your brain healthy. These same diets are good for your bones, too.

Are most dementia patients living at home?

Yes. The Alzheimer’s Association and Life Care Center believe that people with memory loss do best when mainstreamed in the community. Patients thrive in familiar surroundings, among their loved ones. Whether patients are at home or in a facility, it it still takes a large team of care partners to help them. Patients in good physical health may need care for many years, driving the cost of custodial care beyond the family’s financial capabilities. For these reasons, we support home care and adult day care for dementia patients.

Part of my work is meeting with the family of every newly diagnosed memory loss patient and helping them plan to keep their loved one functioning at the highest level. It is critical to get the patient to make decisions about how they want to live out their life. I ask the family to get as much information from the patient as possible, and make sure all care partners know that their role is to honor the path their loved one selects. You would be surprised what patients say is most important to them. Some families need to share their feelings face to face — to clear the air and find comfort. I always tell families that their only job is to keep the patient comfortable. The road will be difficult, and they can’t be feeling guilty because the patient is not happy. When the job gets too much for them, it’s OK to get help. Care partners cannot protect the patient from the disease, but they can support the loved one’s wishes.

What advice do you give to care partners dealing with strange and upsetting behaviors?

Care partners have feelings, too. We want our loved ones to have good days, remember us and respond appropriately. Sometimes we get caught off guard by harsh or cunning words or behaviors — and it hurts. We get frustrated listening to the same comments or questions over and over. We teach care partners to “interpret” the need that might be generating the behavior and to analyze why the behavior makes us angry. For example, one family member was exasperated because her dad would shower so long that he used up all the hot water every day. When she analyzed his behavior, she found dad soaping himself again and again, forgetting that he had already washed. When all the shower gel was all gone, he would get out of the shower. She solved the problem by putting the soap in a very small container. Dad could only soap up once, rinse and get out of the shower.

Another care partner came to dread the late afternoon when his brother would continually ask, “When are we going to eat?” until dark. The support group suggested that the question stemmed from a need for comfort. Dinnertime is often associated with relaxation, family interaction, a full belly and the end of work. So instead of trying to answer the question, he found little ways to comfort his brother in the late afternoon: additional small snacks, a walk or looking at photos. With added comfort, the questions stopped. Like a mother interprets the cries of her baby, care partners must look behind the words and behaviors to find out what “need” their loved one is trying to express. Respond to the need, not the behavior.

Everyone caring for an Alzheimer’s patient should be in a support group. On Hawai‘i Island, going to a meeting 20 miles away is a hardship. The Alz.org website has virtual support groups online. You don’t even have to leave your home to get new information and solutions to your problems. You may call the Alzheimer’s Association hotline at 800-272-3900, or check out the ALZConnected and Message Boards on Alz.org. You can always call the Program Specialist for the Alzheimer’s Association on your island.

Remember, one person cannot do all it takes to care for a dementia patient. A care team of family, friends, neighbors and church members may still not be sufficient to meet all the needs. County, state and nonprofit agencies may have services in your area. At some point, you may need paid home care or home nursing services. Plan ahead and don’t wear yourself out before you ask for more help. Don’t skip meals and go without sleep because your loved one is active all night. Be sure you have all the resources you need to keep yourself healthy. Learn how to receive help and practice being a receiver as well as a giver.

Tell us about your organization.

“ We must redefine caregiving and create a community that is aware.”

In Hawai‘i, the Alzheimer’s Association delivers most of the education on Alzheimer’s disease and related dementia. Our education and support groups are for patients and care teams who are helping dementia patients: families, neighbors, friends and care providers. In addition to support groups, educational seminars and a robust website with many resources, we provide a 24-hour, seven-day-a-week helpline for all questions and concerns about dementia and dementia care.

Awareness begins with the need for early diagnosis. We are struggling with several barriers to getting patients to visit doctors who can help them with memory loss. What we hear people saying is that because there is no cure for dementia, why should they bother going to the doctor.

Some people are probably afraid, too — so how does early diagnosis help?

There are at least two very good reasons to get a diagnosis and to do it right away. The first; there are other medical problems that mimic Alzheimer’s, and some of them are reversible if caught in time. The second; there are a lot of big decisions you need to make so that your family will not have to make them for you. Making your wishes known now will prevent a lot of family turmoil later on, and family members will feel good if they know what you want. It is important to understand that if you wait, you may not be legally competent to make these decisions.

Let’s talk about how your organization helps family caregivers.

The family is usually intimately involved with caring for dementia patients. Our organization aims to help the family, too. Awareness is really needed for all who wish to help care for loved ones with Alzheimer’s disease.

We run into a lot of “guilty” caregivers who think that they should be able to care for mom all by themselves. More than any other disease or disability, Alzheimer’s seems to cause this extreme guilt in caregivers. However, it is not only inappropriate, but unhealthy. It is absolutely necessary for caregivers to take time for themselves. I cannot stress this enough. The level of care required for dementia patients is beyond what one person can provide. Caregivers are not superhuman and everyone has to change their concept of what caregiving is supposed to be.

We recommend that families work as a team with neighbors, friends, church, civic clubs, county and state support services, and paid service providers. Care for an Alzheimer’s patient takes twists and turns. Every patient is different and nobody can predict what symptoms each patient will encounter. With a team approach, the responsible daughter, son or spouse can stay healthy themselves, and have the time to manage care schedules and plan for the next phase of care.

When I was caregiving, I found it hard to ask for help. Is this a common problem?

Yes, this is a very common problem in Hawai‘i, where we have a cultural bias against asking for things. Our way of life centers on giving, but we don’t take; we offer, but we don’t ask. The cultural ideal is to not burden others. It may be very difficult for the caregiver to ask for help. That is why we have the helpline (800-272-3900). Families may start here with us by making one phone call. We will refer them to other services and get the ball rolling. Alzheimer’s Association can make it easier to ask for help and put you in touch with other care partners who have answers.

Today there are 26,000 Alzheimer’s patients in Hawai‘i. We estimate that there are 69,000 people who identify themselves as caregivers. You probably know someone who is helping care for a person with dementia.

The last thing I want to tell readers is that care comes in small packages. I have people tell me, “I’m not a caregiver; I just buy the groceries every week,” or “I only sit with Dad on Sunday so Mom can go to church.” These little gifts of running an errand or giving the main caregiver a few hours of respite are very important ways to give care. And they are very culturally acceptable in all our island communities.

So don’t be shy about the good you are doing. You are helping more than you know.

What should our readers do to connect with Alzheimer’s Association?

Visit our website — it’s a library of helpful information. If you know a family who is struggling to get dad or mom diagnosed, or needs help developing a care team, give them our helpline number or send them to our website. If you want to help the family of a friend with Alzheimer’s, we can suggest how best to offer your assistance.

Facing Alzheimer’s disease or related dementia takes courage and the energy of a large care team — family, friends, neighbors, pastors, coworkers, volunteer care partners, paid care professionals and public service employees. It all begins with awareness. Share this article with everyone who needs to know what our Hawai’i experts have to say.

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Information & Services at www.alz.org

• 24/7 Helpline: 1-800-272-3900
• Care Partner Support Groups (O‘ahu and Neighbor Islands)
• Practical Classes for Caregivers, e.g., “How to address challenging behaviors”
• Wandering Solutions: MedicAlert™, Safe Return™ and Comfort Zone™ Program
• Community Resource Finder
• How to Plan for the Future
• Online Forums and Message Boards

These are just a small example of what you’d find online