Special to The Hawai‘i Herald
It’s been just over a year since the Herald published its special issue on Alzheimer’s disease, and although a cure for the disease has yet to be found, we wanted to update readers on the current state of Alzheimer’s.
Few among us in today’s society remain untouched in some way by Alzheimer’s disease. You may have a family member or a friend living with the disease, or perhaps you knew someone who had it previously, but has since passed away.
Alzheimer’s is a form of dementia, which is a decline in mental ability, such as memory loss and changes in thinking. It is severe enough to interfere with everyday life. The disease can also affect an individual’s personality. There are different types of dementia — Alzheimer’s is the most common of them, accounting for 60 to 80 percent of dementia cases, according to the Alzheimer’s Association.
Not all cases of dementia are caused by Alzheimer’s disease, so it is important that a person be evaluated by a qualified health care provider to determine whether the signs of dementia are due to Alzheimer’s or some other disease or condition. Other types of dementia include vascular dementia, dementia with Lewy bodies and frontotemporal dementia.
The highest risk factor for Alzheimer’s disease is age. The older you are, the more at risk you are for developing Alzheimer’s. In fact, the likelihood of developing Alzheimer’s doubles every five years after age 65. However, not all older adults develop Alzheimer’s. You may know of people in their 70s, 80s and even 90s and beyond who do not have the disease and are living healthy, active lives. Some are still working part-time — some, even full-time. U.S. Sen. Dan Inouye, for example, was still working hard as a United States senator and was one of the most powerful figures in national politics when he died at age 88. So, advanced age does not mean that a person has Alzheimer’s, or even that he or she should no longer work due to age.
One reason communities are so concerned about the disease, however, is because we are likely to see more cases of Alzheimer’s as people live longer and as growing numbers of people transition to older adulthood (65 and older). The first of the so-called “Baby Boomers” (the generation born between 1946 and 1964) began turning 65 in 2011, and their numbers will continue to fill the ranks of older adulthood until about 2030. This “age boom” will affect families and communities across the United States in many different ways.
Japan is currently in the midst of an “age boom.” According to the U.S. Census Bureau, about 14 percent of the U.S. population is now 65 and older. That percentage is higher in Hawai‘i —15.6 percent — compared to the national average. But, in Japan, 25 percent of the population is currently 65 and older! Countries that are aging rapidly now need only look at Japan to see their own possible futures. Longevity is actually a global phenomenon, but some countries are further along than others.
Approximately 5.2 million people in the U.S. have Alzheimer’s disease, the vast majority of them 65 years and older. (About 200,000 people under 65 have a younger-onset version of this disease.) In a 2014 publication, the Alzheimer’s Association reports that 1) more women than men have Alzheimer’s, primarily because they tend to live longer than men; 2) older Hispanics and African Americans are more likely to develop Alzheimer’s than older non-Hispanic Whites; and 3) high blood pressure and diabetes may put one at higher risk for Alzheimer’s.
In Hawai‘i, an estimated 27,000 people age 65 and older have dementia. That number is expected to grow to 34,000 by 2025, according to a report titled, “Hawai‘i 2025: State Plan on Alzheimer’s Disease & Related Dementias,” which was released by the Executive Office on Aging earlier this year. Numbers reflecting the prevalence of Alzheimer’s are likely to be underestimates because there are those who have the disease, but have not been formally diagnosed.
Supports and Services
Because the number of people who have Alzheimer’s is so large nationally and locally, and is expected to grow, federal and local governments need to plan for a future where supports and services are available to those who need it, such as people with the disease and their caregivers.
Alzheimer’s disease will heavily impact families, who will comprise the majority of unpaid informal caregivers. Today, many families struggle to provide care at home for loved ones with dementia, even as difficulties with care at home continue to mount. Without informal caregivers, the health care and social services system is likely to collapse. The value of dementia care provided by informal caregivers amounts to tens of millions of dollars each year in Hawai‘i alone.
But how does caring for a family member with dementia affect the dynamics of the rest of the family? How does it affect the family finances, the ability to pursue personal growth or professional opportunities, and the health and well-being of the primary caregivers? These are practical and realistic questions, not selfish ones. The reality of caregiver burden — brought on by the physical and psychological strains of caring for someone with challenging health problems — is well-documented by years of caregiver research.
At the societal level, what kinds of community supports and services will be available to help families be effective caregivers?
In the State Plan mentioned earlier, Wesley Lum, director of the state of Hawai‘i’s Executive Office on Aging, writes: “This disease touches the lives of so many that it’s really a community responsibility to make our infrastructure, healthcare systems, and neighborhoods dementia capable and dementia friendly.”
The State Plan specifies five major goals, as well as strategies, to achieve those goals. The goals are to: 1) prevent and effectively treat Alzheimer’s disease by 2025; 2) enhance care quality and efficiency; 3) expand supports for people with Alzheimer’s disease and their families; 4) enhance public awareness and engagement; and 5) improve data to track progress.
In Lum’s message, which appears at the beginning of the report, he writes: “We must increase early and accurate diagnosis of dementia, support research efforts, improve treatment after diagnosis, support our family caregivers, improve healthcare delivery systems, expand access to crucial home and community based services, and provide housing, financial and legal services that are affordable and accessible.”
The full report can be found on the Web at www.hawaiiadrc.org/Portals/_AgencySite/ADRD_Low.pdf
If you, a family member or a loved one has been diagnosed with Alzheimer’s disease, ask your doctor for resources that can help you learn as much about the disease as possible and how to prepare for the future. The Alzheimer’s Association offers a toll-free Helpline that is staffed 24 hours a day, seven days a week. The number for the Helpline is 1-800-272-3900. The association also has a website at www.alz.org with considerable information about the disease, as well as contact information for local chapters in your area. The chapter in Hawai‘i is called the Aloha Chapter. In Hawai‘i, you can also call the Aging and Disability Resource Center’s statewide phone number (808) 643-2372, or visit its website at http://www.hawaiiadrc.org.
Talk with others who have experience with the disease to learn about services and supports in the community. They may be able to refer you to reputable day care or day health centers, long-term care facilities or home health services. Also, keep an eye out for senior health fairs that are held during the year, as they host a wide array of service providers and experts on aging. They are a great way to learn about many different services and supports in a single place. Also, organizations such as AARP, the Aloha Chapter of the Alzheimer’s Association and others offer workshops on various topics throughout the year. The Kupuna Education Center at Kapi‘olani Community College offers an array of aging and caregiving-related courses and programs throughout the year. Its website is www.kupunaeducation.org and the phone number is (808) 734-9108.
Learning how to relate to people who have Alzheimer’s disease on an interpersonal level, with patience and compassion, is of critical importance, as is self-care for caregivers, who so often put their own health care needs on the backburner while attending to the needs of others. Writers such as Frances Kakugawa, whose “Dear Frances” column appears in the Herald, have written books that address compassionate caregiving and self-care. A review of her latest book is included in this issue.
It has been more than a century since the European physician, Dr. Alois Alzheimer, first observed the physical manifestations of the brain disease we now refer to by his name. Since that time, and especially in recent decades, scientific research has added much insight into the causes of the disease and the ways it might be treated more effectively. However, it is a complex subject, and more time is needed to find a cure or significantly stop its progression once it takes hold. Age, genetics, the environment, lifestyle and other factors play a role. Recently, the New York Times reported that researchers have been able to create brain cells in a laboratory that look like the brain cells of people with Alzheimer’s disease. This groundbreaking development should help them and other researchers more realistically study the disease and ways of treating it.
Other research studies focusing on Alzheimer’s prevention and treatment are going on around the world and it is hoped that, one day, the vision statement espoused by the Alzheimer’s Association — “A future without Alzheimer’s” — will become a reality.
Kevin Kawamoto holds a master’s degree in social work with a focus on multigenerational social work and a doctorate in communications, both from the University of Washington in Seattle.